Katie's CDH Story

A new blog....

2010-07-15T20:26:00.001-04:00

We have decided to do another blog. We will still update "Katie's Story" whenever things pertinent to her healthcare/CDH occur, but we want to be able to share things about Michael and the rest of our family. We want Katie's blog to remain true to our experience with CDH. Please feel free to come on over and follow our family happenings on:
http://colefamilymoments.blogspot.com/

Katie's Story----"Birth to Birthday"

2010-05-01T16:37:00.002-04:00

This is a video/slide show we made to show at Katie's Birthday party. Enjoy this year in review.

Katie's Official 1 yr old Stats

2010-04-14T21:00:00.003-04:00

Katie's Official 1 yr stats:
19 pounds, 10 ounces (25th percentile)
29 inches long (50th percentile)
46.25 head circumference (75th percentile)

She is walking...make that running...everywhere she goes. She can climb stairs, and t r i e s to climb onto anything she can reach including chairs, end tables, our ottoman, and Michael's toys. She loves to dance (no music required)

Words she can use:
Daddy (her favorite word!)
Momma (only heard when she is hurt)
Bruh (brother)
Nanna
PaPa
Gat (cat)
Hi!
Hey da (hey there)
Bye
umm (yum)

Other communication:
Waves bye
Gives kisses
Makes "funny face"
Raises hands for "Praise the Lord!"
Hands over ears for Peek-a-Boo (??)
Plays "where's Katie?" (all the time!!!)
Signs for more, and no more

She is eating most all pureed table foods now, and is transitioning to whole milk in a bottle. She hates a sippy cup and will fling them across the room! She may end up going straight to a regular cup because she loves to try to drink out of them (messy!) and walk around holding an empty one and pretending to drink. Also, she definitely has a sweet tooth!

Speaking of teeth, she has 6; 4 on top and 2 on the bottom.

Random facts:
favorite toy--anything Michael is playing with or anything that has previously been taken away :)
dislikes--having socks on, baby gates, grass

WE ARE SO PROUD OF HER!!!

Katie is ONE year old!

2010-04-10T13:03:00.005-04:00

What a year it has been! We thank the Almighty for His immeasurable blessings over the past 365 days. It seems strange that something can seem so painfully recent, yet eons ago. One year ago today we stood by the bedside of our second child, but first daughter, and held hands as we prayed for her survival. To see to her small and frail body invaded by so many machines, tubes, and hoses and face the terrible uncertainty of ANY future for her was terribly trying on our hearts and souls.

In the time since her birth, we have watched our darling endure ventilators, surgery, narcotics withdrawal, feeding aversions, reflux, physical therapy, and a lengthy recovery. Not only did Katie survive but she is thriving!

No longer is she plagued with medications or regular treatments of any kind. Rather, she has learned to walk and nearly run! She has learned to eat almost anything we place in front of her! She has replaced those unmistakable facial expressions of pain and discomfort with an almost constant smile! Likewise her cries and whimpers have been replaced with angelic laughter and girly giggles.

Presently little Katie is fighting an Upper Respiratory infection, but is doing quite well! We have her official Birthday Party planned for a later date due to scheduling conflicts, however we could not let this special day pass without some type of celebration, so Beth picked up a small cake and we had the grandparents over.

Enjoy the pictures of our precious Katie as she learns what to do with her own piece of cake!

Katie Walking 4/1/10 at OneTrueMedia.com

2010-04-02T06:46:00.001-04:00

Katie is on the move! She has decided that crawling is old news and she wants to walk everywhere. Now nothing is safe for Michael, he cannot get away! Speaking of Michael, he did not even start walking until he was 14 months old, so she started 3.5 months ahead of him. Maybe it is because of all of the "physical therapy" that Michael provides her :) We are so proud!!

Photo and video editing at www.OneTrueMedia.com

CDH Awareness Day 2010

2010-03-31T21:50:00.006-04:00

Thank you to so many of our family and friends that participated to raise awareness for CDH! We had such amazing support from everyone. We personally made and distributed over 200 ribbons in the last few days and everywhere I looked today was a sea of turquoise! Enjoy the pictures:

This is one of the flyers that we made and placed around various places to remind people to wear turquoise for National CDH Awareness Day.

This is Taylor, Katie's cousin who is showing her support by wearing turquoise. Check out her awesome turquoise shoes!!!

This is some of the faculty and staff of LaFayette Elementary School. This is one of the schools that Beth works at. Our family has certainly felt their love and support!

Some of the Faculty and staff of Triton High School. These are Andy's coworkers who have joined us in worry, care, prayer, and thankgiving for Katie.

Katie got to meet Kendall, a 16 year old L-CDH survivor that was born June 27, 1993 at our local hospital. She was undiagnosed prior to birth (like Katie) and was air-lifted a few hours after birth to UNC. She is now a healthy honor roll student at Andy's high school where she is also the catcher for the softball team!
Aunt Nora and her coworkers at Coats medical Clinic

These are Michael's classmates and teachers at Judy's learning center.

Uncle J.P. Aunt Denise, and Mrs Nancy. We thank all of our family, friends, and coworkers who wore Turquoise today. Today has been designated Congenital Diaphragmatic Hernia Awareness Day, however, we are painfully aware of what CDH is and how it devastates children and their families. We are proud to promote CDH awareness not just today but every day!

Our tribute to the Parker Reese Foundation

2010-03-04T06:36:00.001-05:00

Make video montages at www.OneTrueMedia.com

10 months and growing!

2010-02-20T17:53:00.003-05:00

Katie had her 10 month check-up on Tuesday and everything went very well. First, she met with Dr. Gustafson to thoroughly evaluate her development to this point. CDH babies, or really any babies who spend a long time in the NICU, are more likely to suffer delays to their physical, mental, or social development. This testing lasted over an hour and consisted of playing lots of games with Katie and introducing new ideas/problems to her to see how she reacted or problem-solved. We were pleased to find out that she scored at or above her age group for all areas. Yay Katie!! Next we went to our regular clinic visit with Dr. Benjamin. She was so glad to see how well Katie was growing and developing. Katie now weighs 18 lbs. 11 ounces (just under 50th percentile) and she is 27 inches long(25th percentile). She is taking liquids and stage 2 solids well. We seemed to have escaped the big worries of the winter: severe colds, flu, and RSV. In fact, her breathing was so much improved that we will no longer have to do her steroid nebulizer treatments that we were doing twice a day. Here is Katie with Dr. Benjamin. We LOVE her and are soooooo sad that this was our last visit with her. But we wish her well and appreciate all that she has done for us!!!
Finally, we made our way over to the familiar ICN where we visited with some of the great staff and we got to meet Jennifer Holmes, mom to new CDH baby Charlie. We took her out for a gourmet ;-) lunch down in the cafeteria and shared our experiences. The Holmes family is the 12th family to call Parker's house home and we wish them the best. So far, so good! Charlie had his repair surgery yesterday and it sounds like he is doing quite well. Go see their CaringBridge site and support them in this journey: http://www.caringbridge.org/visit/charlieholmes

Happy Valentine's Day!

2010-02-14T20:29:00.002-05:00

I had to be sneaky, but I managed to color this entire thing without mommy catching me! Phewww. Daddy had to cover for me a bit, but we were able to sneak this on the fridge after momma went to bed. I only colored outside the line just once, so momma was very pleased!

Happy Valentines day everyone!

Snow!!

2010-01-31T19:23:00.006-05:00

We have had two fun days of playing in the snow, a rare treat around here. Sorry, no pics of Katie today. She has had several days of runny/stuffy nose and has been having to work really hard to breathe. We decided not to push our luck by taking her out just for a photo-op (although no doubt she would have been a very cute snow bunny!) The rest of us, however, had a great time!!

Sporting the new duds!

2010-01-26T22:03:00.002-05:00

Beth ordered these shirts from "Embroidery by Cindy" on Etsy Store. She gives half of the CDH shirt proceeds to the Parker Reese Foundation. It was a no-brainer that we should order up a couple.

I HATE CDH!!!! YUCK!!!

2010-01-26T21:53:00.003-05:00

This picture just cracks me up! We got a new camera and it has one of this little really bright L.E.D. lights that helps the auto focus and "red eye". Katie can't stand it if you are close to her. She makes some awful faces and Beth caught this one. We did not feed her a pickle or a lemon, I promise! That would be mean,.......funny, but mean.

Sooooooo, We say that his is her "I hate CDH!" face.

Some Christmas Pictures

2010-01-26T21:29:00.005-05:00

We had a wonderful Christmas with our Children. We never fail to appreciate each and every day with them. Once a person has experienced the uncertainty of watching your infant stuggle to survive, you realize just how special every day is. Not just holidays; everyday is special.

Enjoy the pictures, of our Holidays!

I love you Gran Gran

2010-01-26T21:04:00.003-05:00

We are saddened by the loss of Beth's grandmother Madeline Stanley on December 11th. She was called "Gran Gran" by Michael, and Katie would have followed suit. She was a Godly woman who was referred to as a powerful "Prayer Warrior". She loved us and our children dearly, as we did her. After a long and proserous life of 90 years she was finally able to meet her Jesus whom she loved whole heartedly. After a short but courgous fight with sickness, her last words after a lengthy prayer were "Praise the Lord Hallelujah."

I can only hope that when my time comes that I can go with as much peace and anticipation. We know that she is shouting on the streets of gold, and we would not ask her to come back if we could!

CHRISTmas almost here!

2009-12-19T15:51:00.002-05:00

After breakfast this morning I let Katie crawl around the Christmas tree, which is nomally off limits. As a matter of fact we placed the tree in the corner of the dining room beyond the baby gate in order to prevent Katie from toppling it over.

I allowed her to explore a bit just hopeing to get these shots. We as a family are happily awaiting our first Christmas as a family of four. Beth and I know that that the best presents we have ever gotten are our children. Enjoy these candid shots!

Christmas/Winter pics

2009-11-28T22:09:00.003-05:00

We had pictures made today and they were just too cute not to share!!

Giving Thanks on Thanksgiving!

2009-11-26T08:40:00.002-05:00

Dear Lord, I am thankful to you for all things in my life, the many blessings, trials, and triumphs. As I reflect on these things, I want to give you all the credit. Thank you so much for my family. You have allowed me to know and feel the love of my wonderful grandparents Mac & Margie McDuffie, Madeline Stanley, and Elizabeth Harmon. They are invaluable resources for the wealth of knowledge and experience they have and share with me. Thank you Lord for their lives, so that my children can know them as well. Thank you for my parents, Joan & Bennie Harmon, and Andy’s Parents, John & Irene Cole. They have always been supportive of their children, but never before has so much been asked of them. They have been willing to drop everything at a moment’s notice to help when we call (and boy, have we had to call!) Thank you especially for my mother, who put her life on hold for us this year. First by moving in with us at Parker’s house to care for our son while we were going back and forth to the hospital, then by using her time and energy to care for our daughter who could not go to daycare. We could not have made it through the last eight months without her! Lord, thank you for our brothers and sisters, and their spouses. Nora, Bobby, JP, Denise, LeMai, Frankie, Brian, Christy, Keith, Kelly, and Steve: you have done so much for us; your visits, prayers, babysitting, money, and food help to sustain us during the most difficult time in our lives. We have truly felt your love and support. I thank you most of all Lord for my husband and two children. Andy is my whole world, and has been for the last 13 years. Thank you for the love in our marriage. Thank you for putting us together, and leading our household, and allowing us to care for Michael and Katie. Lord thank you for all of our great friends who have been with us in good times and bad, sharing our laughter and our tears. While I am not glad there is a condition called CDH or that you chose our daughter to have it, I am appreciative to you Lord for the experience and outcome that we have had with it. Katie’s CDH has changed our lives. We will never be the same carefree, oblivious people we once were. But Lord, I thank you for that. I don’t want to be that person anymore, because now I recognize our blessings and value our lives more deeply. Through Katie’s condition, you have allowed us to meet some of the most wonderful people. I thank you for Parker Singletary. Her life inspired her parents Jessica and Ashley to create a wonderful foundation in her memory that helps families like ours every day. We could never repay them for their support while we were in the hospital. I thank you for the Myers family, the Vierigs, and the Ashworths, who we have met through this shared experience. I thank you for giving all of the doctors and nurses at Duke the knowledge and skill to treat Katie and save her life. I know that you were there guiding their hands. Thank you Lord for our church. Not only have you provided us a place of worship, but an extended family whose prayers and support have been unceasing. I thank you Lord for the understanding and the support of our co-workers. Both Andy and I have had to rely on others to complete our tasks and do our jobs in our absence. We both work with wonderfully supportive schools that have provided us with so much encouragement. Lord, this day and every day I want to continue to thank you. I appreciate my life and every aspect of it, whether it be a high point or low, you have been with me, guiding me every step of the way. This is definitely not a comprhensive thank you note Lord, but just some things that were on my heart this morning. THANK YOU!

Catching up...

2009-11-21T21:49:00.005-05:00

This past month has been one of the busiest that I can remember since we have had children. Between constant work and family obligations, it doesn't seem like we have had more than a few minutes of real family time together. Finally today we have been able to sit around and enjoy the day without interference. It was great! Here are a few of the things that we have missed posting about: Halloween cuties, first teeth, sitting, and standing.

This is a video we captured today of Katie pulling up and standing. It is so hard to believe that just 7 months ago she was tied down in a NICU isolette bound by tubes and wires that were sustaining her life. Hear her laugh? She does that all the time, she is the happiest baby I have ever been around!

Katies story day 183---6 months already?!

2009-10-13T19:38:00.001-04:00

Wow! As I have heard said before, “have you seen any time laying around here,…I seem to have lost some! Where did it go?” Can you believe it? Friday marked six months since Katie was born!! Where does time go?
Beth and I felt obligated to provide each of you with a Katie update on such a monumental occasion. For those of you who are new to the story see me and I’ll catch you up.

It is hard to imagine that just a short time ago our little girl had far more working against her than for her. There were SO many ways for her to depart this life, and so few to stay. Had she given up, who could or would have blamed her? Fortunately she has gone from seemingly barely holding her own, to being the vibrant and VERY happy little girl that she is. Katie nearly always smiles, quite frequently “sings”, and rolls all over the house. She has been weaned from all of her medications except the breathing treatments and one for reflux, which have been instructed to begin weaning in two weeks.

She still has physical therapy once a week, but her therapists can definitely see progress. I predict that within a short while she will have carpet burn on those tender little knees from crawling, as she is often on “all fours” and rocking! She takes an interesting stance with her right knee up and the sole of her foot on the floor, appearing quite like she is preparing to stand. In this fashion she scoots in more of what we call a “Cralk”.

This is the same little girl who spent nearly two weeks on a high frequency ventilator which made her breathe 420 breaths per minute. The very same little angel who had PICC lines, arterial lines, IV’s, replogle tubes, lines in her umbilical cord, and breathing nitrous oxide, blinders and ear phones. Katie had corrective surgery at six days, and then days upon days of morphine withdrawal. Let’s not forget the three weeks that it took to get her to take just one and a half ounces of milk from a bottle, naso-gastric tubes and all the fun of reflux associated with Congenital Diaphragmatic Hernias (CDH).

Beth and I often wonder where our baby went. We missed those wonderful days of snuggling with a new born. We had lost those quiet, dim lit evenings rocking, and all the little things that people take for granted like caring for a new little belly button. By the time we “got” her, the “new born” had been stolen away from us by CDH. Now we face her accomplishments such as holding her head up, then rolling over, crawling, learning to sit up, and eating stage one baby foods with mixed emotions. On the one hand we are very proud of our little girl and encourage her 100%, however it is tempered somewhat by the knowledge that her beginnings, being atypical, were spent in the Duke Intensive Care Nursery. As parents who really lood forward to the parenting experience, we seem to have skipped that very first part of her life.

We could hardly wait for Michael to do all of these milestones. With Katie, the smiles come moistened with tears.

During our family’s journey over the last six months we have come to know and love some very remarkable people. People who were strangers once are now family. From the home away from home given to us by the Parker Reese Foundation, to Katie’s CDH/Intensive care cousins who lived,….and died, while at Parker’s house and Duke. Our families have a bond tethered not by blood, but by pain, paralyzing fear, uncertainty, loss, victory, setbacks, and fret. It is hard to imagine that such a relatively short period of time can define a person. Experiencing such things can test the mettle of even the strongest of people.

I know that Beth and I have changed because of this. We are better spouses; we are better parents; but most importantly we are better people. Our love for God and family has only gown. We have tested the power of prayer and faith, and God has shown once again that He is in control. We can only give Him honor and praise and glory, undying gratitude,… and our hearts and souls.

We would like to thank all of the fine Medical Personnel at Duke for facilitating God’s healing touch in our little Katie. We would like to thank our family, friends, and coworkers who have stood beside us during the most difficult and trying times in our lives. Always and forever more we will thank the Almighty for giving us our children.

2009-09-22T22:12:00.003-04:00

This is the Cole family circa 1862 minus daddy who is behind the camera. I (Andy) have been a Civil War reenactor for nearly 15 years. Beth joined me in this hobby shortly after I began. We have enjoyed traveling and participating in living histories and battle reenactments. Our involvement has taken us to many states and battle sites, including Canada.

Michael has been an active part since he was born, portraying the typical child of the time period. We were very pleased this past weekend to be able to introduce Katie to the hobby that has meant so much to our family. We have had to be very careful in regards to exposing her to contagions, so we strategically placed her well beyond reach of spectators and would-be fondlers. She is very much a "look but don't touch" part of our historical impressions.

She was very much a hit with spectators and reenactors alike. We are members of the 1st North Carolina Volunteers/11th North Carolina State Troops. This past weekend we participated in a living history at Fort Macon State Park, in Atlantic Beach.

This will probably be her last significant outing before the mandatory winter "hibernation" during the Flu and RSV season. This "hibernation" is recommended for all CDH babies.

Happy Grandparents Day!

2009-09-13T20:05:00.002-04:00

Katie and Michael are not old enough to appreciate the fact that they have four living grandparents and four living great grandparents. These are the same people who gave up their time and money to move to Parker's house and keep Michael, run supplies up and down the interstate, feed our farm animals, mow our grass, and generally help us through the most trying time in our lives.

Each of these people are selfless and wonderful providers for our children. We can't thank them enough.

In order to celebrate grandparents day, Beth and I invited all of them to lunch today. We were very glad to see everyone. Mr Bennie's mother Elizabeth Harmon could not make it, and we missed her.

We also love to entertain guests and really enjoy seeing our dining room table full of family, friends, and loved ones. This picture was taken after we had all eaten our fill of a wonderful Sunday lunch.

5 Months Old...Seriously??

2009-09-08T15:52:00.002-04:00

Tomorrow Katie will be five months old. I cannot believe it! The time has gone by so fast. My maternity leave is over and I have been back to work for 3 weeks already. It has been such an adjustment for me since I had gotten so spoiled by being at home with her 24/7 since we brought her home. A big thanks to everyone I work with for allowing me to be a bumbling idiot while I cried through the first few days back at work!!

Today I took Katie back to Clinic at Duke for her check-up with Dr. Benjamin and Dr. Malcolm. While we were waiting to be called back, we got to visit with CDH superstar and fellow Parker's House alum, Carter Myers. As you can see from the picture above, Katie was mesmerized by his smile and charm! You can read up on Carter's journey by visiting their link on the left side of this page.

Katie has made great strides in the last couple of months and her doctors were really impressed with her progress today. She now weighs 13 pounds, 5 ounces. Yeah! She has moved up to the 25% for weight and length, and is still in 75% for head circumference (of course...have you seen her daddy's head!). She is rolling all over the floor, propping on her knees and elbows, and even trying to sit up unasisted for a few seconds at the time. She is now meeting or exceeding all of her physical developmental milestones so her physical therapist is working toward discharge. Over the last few weeks, her reflux has been soooo much better and Dr. Benjamin feels like we can start the weaning process on some of those meds. Woohoo!!

Five months ago today I had no idea what was about to happen to my family. CDH was just some random diagnosis that I had heard of once during nursing school, and it meant nothing to me. Wow, what a difference a day makes!! Thanks again to everyone who has prayed for us and have followed our journey. We have certainly felt your support!

Beth

Happy Baby, Good Big Brother!

2009-09-04T22:03:00.003-04:00

Katie has begun to chuckle some on rare occassions. Tonight Michael was jumping off of a playschool slide in our living room. For some reason this was of great interest to Katie and extremely funny. She would watch and then chuckle when he landed. This game went on for quite a while. To us this was just so adorable that we videoed aboout a minute or so.

We are glad to be able to share these precious moments with you!

Moving up the "food chain"

2009-08-25T21:45:00.005-04:00

Katie is flourishing! She has begun eating 7 fluid ounces per meal! She weighs a bit over 12 pounds, and we have been given the green light by her pediatrician to start feeding her some baby food. Soooooooooooooo , we have begun attempting to feed her some rice cereal and small amounts of baby food with a spoon.

Initially Katie was a bit apprehensive, but tonight decided this might be alright after all and quite readily opened her mouth in anticipation. On occasion she even took Beth's hand and pulled it toward her mouth.

We feel mixed emotions about her progress. With Michael we could not wait to feed him with a spoon, or for him to crawl or sit up. With Katie all of these changes come with some reluctance.

We feel that we never had the chance to have the "infant baby" time with Katie that we had with Michael. It may also be that we are still in the sheltering and/or protective mode for our special little package. Time stands for no one, and in our case it seems to be sprinting.

Enjoy the pictures of our little angel enjoying her "Spoon Time!"

2009-08-14T20:41:00.003-04:00

Michael holding his little sister on the dune.

As the grace of God is ever sufficient, he has seen fit to shine his good graces upon my wife's grandparents. They have recently celebrated their 65th wedding anniversary. In celebration of that wonderful occasion the entire family went to Cherry Grove, North Myrtle Beach South Carolina and spent some time together. Yesterday was the culminating event with all 15 of us being picked up in a stretch Hummer Limo and driven around Myrtle Beach while the guests of honor took a ride (in style) down memory lane with their children, grandchildren, and of course two great grandchildren (Michael and Katie).

After a nice meal at a prominent local restaurant the entire group donned white shirts and khaki pants and headed off to the sand dunes and sea oats for a large group family photo. The photographer did a wonderful job at keeping 14 sweating and impatient adults and two squirming children focused through dozens and dozens of snap shots. Also during the session each family pod got to have some individual poses snapped. We'll share the professional shots when they come in. While some of the others were taking their photos we snapped a couple impromptu shots with our little digital camera. We wanted to share a few with you.

Walking on the Beach as a family.

Our family with Beth's Parents, Bennie and Joan Harmon.

Two Marathon Days at Duke

2009-08-06T18:17:00.006-04:00

Snuggling with daddy during the test.

Katie all "wired" up again!

As with all CDH babies, our calendar is speckled with trips to Duke for some Katie's 2oish doctors to see her one at a time. On Tuesday we trekked to Durham for the Audiologists and Speech language pathologists to check her out. As is the norm, most CDH children are at risk for hearing loss due to a combination of some of the medications that are routinely administered and the noise of some of the machinery that is required to both sustain and stabilize them.

While Katie was still a patient at Duke she had her first newborn hearing screening, which she passed provisionally. Tuesdays trip was all about her ears. It took three attempts at the test to secure a passing score for her right ear, but her left passed on the first attempt. We are exceptionally thankful for God's continued blessings. We will have to have them checked again at 8 months.

Katie on the examination table

Day two at Duke was spent with the surgeons who actually performed the life saving procedure to correct the hernia by removing her liver, stomach, and intestines from her chest cavity and suturing the diaphragm. The same super steady hands that so meticulously made our little girl whole, again gently inspected the fruits of his labors, and smiled as he confirmed the complete success of her healing. Her scar is slowly fading, and is becoming less and less noticeable. One cardiology intern has even asked at one point if a plastic surgeon made the closure of the incision. Beth and I can only remark that the Greatest Physician had a hand in this surgery and recovery.

I was given the green light by Dr. Hoehner to rough house with her, bounce her on the bed, roll her around, and wrestle with her just like I did, and still do, with Michael. He reinforced the fact that Katie is not a Porcelain doll, and not fragile. He thought that it would be a while before she would be able to take me, but to let her try!

As tough as she is, I may be in for a fight when she gets older! Michael better look out! We will probably both get some lumps at her hand. I will really be worried when they figure out that they can gang up on me!

Katie is doing exceptionally well all things considered. She weighs a few ounces less than 12 pounds, and has grown to 23 and 3/4 inches. Her reflux seems to be progressively getting worse, and we have found that is easier to change bibs than suits of clothes. Therefore Beth keeps a stack of bibs handy in order to perform NASCAR pit stop fast changes of bibs.

To her credit, Katie has also started sleeping 12 hour stretches very consistently at night.

The Lord has blessed us with two great kids!

Making room for Katie

2009-08-03T21:27:00.007-04:00

As our family expanded it has become painfully clear that my old faithful chevy truck just did not have enough room to haul mom, dad, Michael, Katie, and all associated paraphernalia. One of the first things I did when I graduated from NCSU was to purchase my first new truck. A blue 1998 Chevrolet Silverado extended cab. This truck has provided wonderful and nearly uninterrupted service for nearly 193,000 miles.

Katie's only time sitting in daddy's old truck

"Ol' blue" Just before being traded in during the short lived "cash for clunker" program.

At a local Chevrolet Dealership Beth discovered that the "cash for clunker" program officially began on last Monday. This also overlapped the last week of employee pricing and an additional $4,000 rebate from Chevrolet. Since my truck also qualified for the government $4,500 cash for clunker program, and with a few other lesser discounts we ended up buying a 2009 Chevrolet Silverado 4X4 with a Crew cab for nearly $11,000 off of the original sticker price.

This new truck has ample room for two car seats and even another passenger. So the Cole family welcomes our new truck, which was honestly a purchase of necessity coupled with the benefit of the stars lining up just right. We signed the papers about 6 hours before the government "cash for clunkers" program was suspended! Talk about luck or blessings!

A new point of view

2009-07-28T19:25:00.003-04:00

Katie has some physical developmental delays due to her hypotonia (low muscle tone) and has not hit some milestones on time. This is due to her stay in the ICN for 6 weeks and not getting the normal stimulation and play that most babies start getting as soon as they come home from the hospital. However, since coming home she has begun to catch up and has recently mastered holding her head up. This has given her much more to look at and she has decided that she wants to be where she can see all the time. We are so proud of her hard work!

Someone told us that Michael would provide some of the best physical therapy, and they were right! She follows him all around the floor and watches him play.

I just came around the corner from the kitchen and this is what I saw. Michael is so sweet with her! She was whining a little and he said, "Don't cry, I love you sister!"

Cardiology checkup at Duke

2009-07-27T21:53:00.004-04:00

Katie had yet another one of what has become a regular appointment at Duke. Today was for her to be checked out by her cardiologist. All went well! There is some concern, albeit small, about some conditions dealing with her heart. Like many CDH babies, Katie has some associated defects, but her prognosis is VERY good! She has a few abnormalities that will need following for a while, but no other interventions have been planned.

At present she weighs a whopping 11 pounds and 12 ounces! She is still just a bit under the 50 percentile margin, but this is a huge jump from the 10-25 percentile range that we have become accustomed to. Beth is very excited that she has finally outgrown newborn clothes and diapers! She cried every size change with Michael, but this growth spurt has brought tears of joy to us both!

She has gained enough strength now to hold her head up quite well! She has also begun rolling over and over! She will be on the other side of the room in mere minutes!

Katie has fallen right into the footsteps of her big brother Michael, and has turned into a wonderful sleeper! It is not uncommon for her to sleep from 10:30 or 11:00 at night until after 10:00 the following morning.

While life with a CDH survivor and all of the associated medications, doctors visits, reflux, and tons of precautions is not your everyday "normal" it has quickly become our normal, and our lives have fallen into a well oiled rhythm.

Michael adores his little sister and has become quite possessive and protective of his Katie. He is such a good helper and big brother!

Dedicated to the Lord!

2009-07-27T21:27:00.002-04:00

We have been a bit slow in providing updates, but the life of an agriculture teacher is quite hectic during the summers. I spend a lot of time at camps, workshops, conventions, and conferences. So forgive the delay!

Beth and I had Katie dedicated to the Lord on July 12th. If you have read any of "Katie's Story" you will undoubtedly know that we had given her to the Lord from conception, especially during the trying times while awaiting the repair and recovery periods at Duke. However we decided to make it official and do the paper work.

Since Katie's story was so widely distributed, we have gotten several requests to share her "story" as a testimony at several churches. We feel obliged to accept the invitations in order to share not just her story and the miracle of her life, but also those of other CDH babies everywhere. This has provided a great outlet for us to recount the many blessings that the Almighty has showered upon our family, as well as parallel Katie's experiences with some of the trials of being Christians.

We made a 38 slide power point and used a data projector to share images of our journey. Pictures are worth a thousand words. As an experienced classroom teacher, I can pick up on when people are bored or when they begin to lose focus. There were few dry eyes and absolutely no clock watchers or nappers! Katie's story is truly a remarkable and powerful testimony of God's healing and mercy.

After the service and dedication we retired to the church fellowship hall for a wonderful covered dish meal and time spent with family and friends. All in all a great day!

A day at Duke

2009-07-06T09:54:00.008-04:00

Katie had another visit to Duke on Thursday the 2nd of July. This visit coincided with a milestone for us. Katie was exactly twelve weeks old on that day. The significance of that is that we were at duke for exactly six weeks. This means that we had now been at home as long as we were at Duke. We feel like we are now on the plus side a bit as I write this.

Our day at Duke began about 5:30 or so that morning. We both had to get up and not only get us ready, but also get up two children and get them ready. Some of this was greatly reduced by Super Nana who volunteered to come and take Michael to day care for us. Our appointment was scheduled for 9:30, so we had to leave home about 7:30.

Before I go too far let me acknowledge that of all of the "Parker House" families, we live the closest to Duke. We can be there in about and hour and a half. Our sympathy goes out to those who have to travel multiple hours to go to their check ups.

We arrived in the parking deck just after 9 a.m. We then made the familiar trek through the long rapid transit tunnel, after looking for our friend through the window. Katie's check up ran as smooth as silk. Dr Benjamin and Dr. Ashley both gave her a thorough looking over, and said things looked quite well. She was weighed and had gained to 10 pounds 10 and 1/2 ounces.

Katie and Dr. Benjamin

We were sent to have a pulmonary function test (PFT) and had to wait about 45 minutes. On the way to this test we got a brief glimpse of the Myers family who had an appointment for Carter during the same time. Katie performed quite well on her PFT and upon crunching of the numbers it was decided that she could be removed from one of her nebulizer medications unless she exhibits a need. This cuts her nebulizer time in half for us.

After all of Katie's Dr.'s were finished it was Mom and Dad's turn. We had volunteered to be a part of a research study to help find the cause of CDH. So for the next hour or so Beth and I answered a series of questions about our jobs, families, and lots of other topics. We also both had several vials of blood drawn for research purposes.

We left Duke about 3:00 pm, feeling quite well, and once again thanking God for our little girl. We feel so blessed to have her and also to live in such close proximity to such a wonderful medical facility as Duke!

Camping, Beaching, Reuniting...

2009-06-29T14:04:00.004-04:00

It has been a while since our last update on Katie and family. For Beth and I it seemed that when Katie was in the hospital that time seemed to stop, while the rest of the world just kept marching on. We have not yet gotten caught up. Things have been so hectic that we have gotten way behind on our updates, for that we apologize.

We have had a very busy time since we brought Katie home. I had to try to cram as much information as possible into my students to help prepare them for the final exams in my class. They did not have the benefit of a full time teacher for nearly six weeks of school, so we had to make up as much ground as possible. Then, the Monday after school ended, I left with 23 students and FFA members to attend camp at the NC FFA Center at White Lake for a week. The interesting part of this is that I decided to take one particular 2 year old with me!
Michael came down briefly last summer but he was a true camper this year. The first night there a rather ominous rain set in. Then came the storms and high winds. The cabins at FFA camp have walls that are about four feet high and then have window screens from there to the roof to allow ventilation. The high winds blew rain in one side of the cabin and out of the other. Michael seemed to enjoy shouting over the wind and thunder to inform me repeatedly, "It's raining Daddy! It's raining!" The older boys and I did what we could to block the wind and rain from completely everything by standing the vinyl mattresses up against the windows. Only two beds were spared from the thorough soaking. We wrung as much water as we could from our linens and used the cabin dustpan as a makeshift squeegee to push all the water out the front door. In certain parts of the camp the water level rose to fill the cabins with 2-3 inches of water. We had about 9 inches of standing water around our cabin. You can imagine that this was too much of a temptation for Michael, he just had to walk through every puddle!

The rest of the week went off without a hitch and Michael loved it! Beth got brave and did venture out to bring Katie to visit for two days (there is a guest lodge with all of the normal hotel amenities). We are still very cautious about hand sanitizing and exposure to certain things but Katie sure seemed to love napping in her stroller under the shade of one of the many trees at camp. Being the children of an Agriculture teacher and FFA advisor, Michael and Katie will be a part of this camp each summer for many years.

After returning home on Friday, I hurriedly unpacked my camp stuff and repacked my beach stuff. Of course my very efficient wife already had her things and all of the accessories for both babies packed up and waiting for me. Beth's family owns a house at Cherry Grove in North Myrtle Beach, SC, and I had been persuaded to go and spend Father's Day weekend there with Beth and her parents. So the Cole crowd loaded up and took off. We had a good time together at the house and were able to spend time on the beach as well. We even took Katie out for a little while to see the ocean. We set up a rather large tent that could shade us from the sun and Katie, slathered in maximum baby sunblock, sat and enjoyed the salty ocean breezes. There were plenty of family members present to watch over her while Beth and I played in the sand and surf with Michael. Nana Joan also made it her mission to get him comfortable being in the water, and that she did. I think the boy would grow scales and gills if he could!

Now for a specific Katie update. We took her to be weighed last Friday and drum roll please...Katie now weighs an incredible 10 pounds, 7.5 ounces!!! She is doing so well that it is scary! She had grown to 23 and 1/4 inches. She has also learned to roll over, so no more just putting her down anywhere! She has also really learned what that bottle is for: she is routinely taking 4.5 to 5 ounces per feeding. That is 150 ccs! It almost seems difficult to remember when we were begging her to eat 10 and 15 ccs. Most nights she will sleep from 11pm until 7am the next morning. She is such a great baby!!

The Lord has blessed us so much! We were so excited to be able to attend the first annual reunion of "Parker's House" this past Saturday. There have been eight CDH families to live in that haven since it opened a little over a year ago. We were the fifth family. There have been four survivors so far and the eighth family is waiting for the birth of their son Daniel any day now. Beth and I were finally able to meet the other miracle children that we had heard and read so much about. All of the survivor's families showed up for the wonderful day of fellowship. While each one of the children's CDH followed a different course, it was filled with similarities. All of our lives have forever been affected by CDH, and in many ways Katie was born into a dual family; related not by blood, but by suffering and experience. Carter, Bodee, and Davis will always be her CDH cousins!!

Ashley & Jessica with Davis, Bodee, Katie, and Carter

We were all very proud to share our experiences with the newest couple to be affected, as they await the birth of their little fighter, Daniel. We were able to answer many of their questions and at least give them some insight into what they are about to face. This would have been invaluable to Beth and I had Katie been diagnosed before birth. Now our prayer is not only to ask God to continue to bless the four that made it through, but to also provide comfort and healing for the families that lost their little ones. We also pray for baby Daniel's family as they take their first steps in what will undoubtedly be a difficult journey.

Bodee, we definitely believe!

Jessica, Katie, and sleepy Carter

Bodee, Davis, and his DaddyMichael

Jes and Katie

Happy 2nd Month Birthday, Katie!!

2009-06-09T22:53:00.006-04:00

It is hard to believe, but Katie is 2 months old today. To me, it seems like much longer. When I look back on our time in Duke, it is almost like a lifetime has passed since her diagnosis and those first unstable, uncertain weeks. My days at home with her now are both surreal and “normal.” I am so happy she is here and that I can touch her anytime I want to, pick her up and move her anywhere without lines to maneuver or monitors to trigger. Some days, aside from the rounds of medication, I even forget that there was ever anything wrong with her.

I am still very emotional about her CDH. Early on, I would not let myself read any of the statistics or information. I just felt like, “Okay, she is here and this is what we are dealing with, so tell me how we are going to fix it.” Now that she is recovering, I have been able to research CDH and have also read so many blogs of other families dealing with this horrible diagnosis. I cannot get through any of them, those with good outcomes or bad, without crying. In each situation I either see Katie, or I see what could have happened to her. That first night we were so close to losing her and I didn’t even know it. I wouldn’t even have been there with her! I am so thankful for her life and I appreciate every moment of these last two months that I have been able to spend with her!!!

Katie had quite an eventful weekend. We suspended our strict visitation policy briefly, to allow her some special outings. We took her to church for the first time, which meant so much to Andy and I. She could have cared less though, since she slept the entire time in her car seat. Everyone at church really seemed to enjoy seeing her (from a polite distance). Most remarked how healthy she looks and how hard it is to believe she was so sick. Our other outing was to celebrate the great occasion of Katie’s great-grandma Harmon’s 85th birthday. We didn’t stay too long but it was wonderful for most of our family to get to meet Katie for the first time. Here is a picture of Katie and the birthday girl!!

Katie and Michael are so blessed to still have 4 living great-grandparents. That is something that most children do not have the benefit of. I hope that they will always value the wisdom and life experiences of their elders!

Tonight I pray a prayer of thanksgiving for the lives of both of my children, and I also pray for all those parents who may not have had the chance to celebrate a Happy 2nd Month Birthday with their child.

Beth

Some cutie pictures!

2009-06-08T08:29:00.005-04:00

Doctors and "New" Old Friends

2009-06-05T22:38:00.005-04:00

Katie and Michael both had visits with their pediatricians yesterday. For a family just barely accustomed to being together, it was a logistical feat to get two babies in, weighed, examined, measured, “shot,” and bandaided. I know that there are those moms and dads out there, who have your very own troop of “younguns,” who are at this very moment chuckling about how easy this should have been. I am sure that it will get easier as we get a bit more experienced. All in all I think we did quite well, even though Michael helped me with the elevator buttons and we hit every floor,…..up and down.

Michael was predictably off the charts. He has always been a big boy. Not like his dad, though. I mean tall, wide, and solid. He was a very good boy during the whole ordeal. He only fell apart when the band aid was applied.

Likewise, Katie did really well. She had gained a phenomenal 10 ounces in 7 days! She now weighs in at a hefty 9 pounds 3.5 ounces. This may seem like nothing, but remember she weighed 8 pound exactly at birth and then lost all the way down to 7 pounds 2 ounces during her time in intensive care. She is still only in the 10 percentile in weight for her age, but she is making great strides.

She has never fully gotten rid of the thrush, and it appears to be coming back with a vengeance. She had been prescribed another round of the same medications that she has already been through. We are just starting over.

We have to take moment and apologize for not mentioning earlier that one of Katie’s roommates has also gone home. His name is Lawson, and he went home last weekend. His crib was just at the feet of Katie’s while we were in the Transitional Care Nursery and they were also neighbors briefly while in one room of the ICN. Beth and I enjoyed the company and conversations that we had with Lawson’s parents. As a matter of fact Lawson got Katie’s “penthouse suite” when she moved out. It was a highly prized little alcove type corner and provided a bit of coziness rather than just along a wall in the TCN. Lawson was actually in the ICN much longer than Katie, and with a much different condition. However their recoveries and post operative treatments were very similar. ( For more info on Lawson, you can read his amazing story here: http://leveringlife.blogspot.com/ )

Anyway….Welcome home Lawson!

Since we are talking about old friends, Michael has had one of his former roommates come to live with us. While we were staying at Parker’s house there were tons of toys there. One of which was a rather large stuffed dog which Michael fell in love with and named him Casey, after Nana Joan’s dog. This stuffed critter was very soft and cuddly and Michael carried him everywhere, even to bed. It broke his heart to leave Casey behind for the next little boy or girl to enjoy. When we got home Beth spent quite a bit of time surfing the internet to find another “Casey.” We had written the manufacturer’s name and the official name of the dog down in order to help facilitate finding another one. After several days of exhaustive searching she finally found two of them on e-Bay. She managed to win the bid for one and got it shipped here from Michigan. It was also delivered yesterday. When Michael saw Casey he flung his arms around this curly haired dog doll and screamed his name over and over. You would have thought that he had found his long lost brother. The two have been nearly inseparable ever since. While this is not the same Casey that we left at Parker’s house, it is identical in every capacity. To Michael this is his long lost buddy come home to stay!

We have new pictures but are having difficulties getting them to load. I will add them as soon as I can!

Andy and Beth

First follow up at Duke!

2009-06-01T21:48:00.005-04:00

Well, Beth carried Katie for what will undoubtedly be one of the many follow up appointments that she will have to have at Duke. Therefore, this is the first of what may be many future updates. We are pleased to relate that after 3 hours of continuous examinations and observations Katie was deemed to be in very good shape. Katie was observed by the speech therapist as she quite handily sucked the bottom out of a bottle containing three ounces of milk! The therapist reportedly just put her hands on her hips and said “I have no suggestions.”Not only did Katie demonstrate her ability to eat, she also proved it on the scales. Katie had gained an ounce a day since she had come home! Wooooooooo-hooooooooo! She may turn out to be a Cole after all! Dr. Mommy and Dr. Daddy have been working hard to keep her at the best clinic possible….home.Everything is not all peaches and cream. Since Katie spent so long in bassinets with tubes and wiring, she is several weeks behind in her muscle development and requires a bit of home physical therapy. She never got to lay on her stomach, so those back and neck muscles that she would have been using are very week. Her hamstrings are also very tight which requires us to stretch them out a bit in order for her to fully extend her legs. We have to help her hold her head up when we hold her, but she is beginning to build up her neck muscles.We are so proud of our little Katie. We are proud of our Michael as well. He has adjusted quite well to her presence, and seems to care about her. He got a bit upset when Papa Bennie pretended to take her home with him. He always kisses her on top of the head before we leave and at bedtime. He has been a bit clingy and somewhat hardheaded lately, but we are unsure if it is because of having another baby in the house or just because he is two years old. Either way, Beth and I are very glad to have them both at home.We have agreed to be apart of a research study at Duke to help determine the cause of CDH. This is simply the collection of a little blood from me and Beth. We are excited to be able to participate in something that will hopefully prevent other cases of CDH. Future updates and pictures as they become available.Andy

Day 47--May 26, 2009

2009-05-26T23:48:00.001-04:00

In some ways the past seven weeks have seemed to slowly drag by. In other ways, at least in retrospect, it has seemed to fly by. I can honestly say that his has been one of the most emotional periods of my life. Never before have I felt such heartache, grief, despair, loneliness, or helplessness coupled with hope, faith, encouragement, and love. Emotional Rollercoaster does not come close to adequately express the ups and downs and/or the speed at which they came. However, through it all Beth and I have known that we were blessed beyond compare.

We were, and are blessed daily with the presence of our Lord. We were and are blessed with the love of our families. We were and are blessed each and every day through your kind words of encouragement, hope, offers of assistance, and generous gifts.

We are pleased to once again report that Katie has had another wonderful day. She is eating well, far exceeding the minimum requirement prescribed by her doctors. She sleeps well. As a matter of fact she slept from 11:00pm last night until 6:00 am this morning. What else could we ask for?

We are getting a handle on the medications and have developed a pretty effective schedule for their administration. While things are not “back to normal,” this is quickly becoming the new “normal.” Beth and I will continually be learning how to juggle work, home, church, children, and of course time for each other. These are conditions faced by any new parent. Therefore we have come to consider ourselves and our family now as “normal.”

Since today is actually one week from our arrival at home, this will be the last daily update on Katie. “Katie’s Story” has not ended. It has really only just begun. This only concludes the first chapter. I will continue to update her website with new information when noteworthy events happen, or as we are led by God’s sometimes subtle messaged to us. If you want an e-mail sent directly to you whenever and update is posted send me a direct e-mail and I will add you to any future mailings.

As far as “Katie’s Story” goes, Beth and I are considering taking it one step further. It has been suggested by numerous people on numerous occasions to compile “Katie’s Story” and have it bound as a book. Perhaps with some help from some of my more literate friends we will be able to do just such a thing. Currently the plan is to pretty much leave the e-mail journal as it was originally written and add lead up information, supporting information, and photos that were omitted. If this publication comes to fruition, we would like to see it placed in hospitals where future families of CDH babies can have at least one family’s perspective and experience with their CDH child. We would also like to share the news of our faith in the Almighty which has supported us through this ordeal.

This is a bittersweet e-mail for me. This labor of love that has driven me daily has come to a well deserved end. However I will miss the daily connection with each of you. To those of you who forward this on to others, I thank you. To all of you whom we have never met, thank you for taking time each day to follow “Katie’s Story.” Thank you all for everything!

God Bless you all!

Andy and Beth

Day 46--May 25, 2009

2009-05-25T21:48:00.002-04:00

What a wonderful weekend. It has been great being at home as a family for our first weekend together! We even got to so some grilling! Michael likes to help me with the outside cooking. Mostly he reminds me how hot that grill is and to not touch it, then he rides his “motorcycle” (tricycle) up and down the porch. Either way he is still with me and that is what seems to matter to him. He is my buddy and I love him!

With that said, those big brown eyes of his have begun to turn a bit green……with jealousy. Granted he is perfectly fine most of the time, but we had the three day weekend and he was with us all day every day, except for Cousin Drew’s birthday party, Happy Birthday buddy!! I am sorry that Katie, Aunt Beth, and Uncle Andy couldn’t make it! We’ll be there next year!

Anyway, since Michael has been able to spend so much time around us and Katie, he has picked up on the fact that she is now using some of his old things, and that is WAY NOT COOL! He keeps reminding us that these are his blankets, and his old toys NOT Katie’s. He has also decided that some of the things that have been given to Katie are his. He even tries to lie on that “boppy pillow” thing with her because it is “his.” We have also noticed especially today that when he cries for whatever reason he wants us to hold him. Once tonight he wanted Beth to hold the both of them at the same time while they were crying.

He did spend quite a bit of time in my lap today. He was on the right side and Katie was on the left. I know that this will pass, but we are making great strides to spend as much time with him as possible. Of course I was as happy as can be to have them both on my lap at the same time! I think that we will mow the grass tomorrow if it is not raining. He loves to ride the lawnmower and tractor with daddy.

Katie is doing remarkably well. She is taking her medications fairly easily. Most of them we can mix with her milk, and as long as we mix it with a small enough amount of milk to ensure she gets it all, things go smoothly. We then just let her finish the remainder of the milk when the medicated milk is empty. We have to use two containers but just switch the nipple. For us this is easier and more effective that trying to convince her to swallow all of those different medications directly from syringes.

She sleeps very well at night and I have been exceptionally pleased. Last night she slept from 11:00 pm last night until 5:00 am this morning! Then she started the day off right by downing 90ccs (three ounces) of milk!

Today with Michael has reminded me just how basic sin is. Let me explain. Before you all get riled up, I don’t think that Michael was sinning today. He is not old enough to know better. My point is that nobody had to teach him to be jealous or covetous. For grown folk this would be breaking one of the great Ten Commandments. As one of my dear church friends told me once, “no one teaches a child to steal and cookie, and then lie about it. It is ingrained in humans from birth to be imperfect.” That is what makes God so great! He forgives us of our many faults and shortcomings, just as any parent forgives their child who spills the milk or breaks a glass after you’ve told them to stop what ever it was that they were doing. After all, accidents happen. We do not have to be perfect, just forgiven.

The fundamental difference, and yet a striking similarity, between Christians and children is that we become held accountable when we know the difference between right and wrong. As adults and followers of Christ’s teachings we must always strive to do what we know or feel is right, not just right but Godly. Unlike children, which upon a certain age or developmental level begin to associate right and wrong based on the proximity of their parents, our Heavenly Father sees everything we do, say, and even feel or think. There is no “around the corner,” “behind the barn,” or at a “friends house.”

Sin is just as basic for adults as it is for children. Christians also mature with age. Many new converts spend the earliest part of their walk with God learning the path. Sin and temptation are just as real to them as that cookie jar is for Michael. The difference for Christians is the cognition to know the difference between right and wrong, and the commitment to our “Father” to listen to his direction and willingly follow his teachings.

Before I close today’s update I would be amiss if I did not take this opportunity to remind people that very few people have ever offered to die for you. One was Jesus Christ, and the others are the American Service Men and Women who are right now putting their lives on the line to preserve our freedoms and to grant those same freedoms to other less fortunate nations. I am sure that each one of them has at some point prayed “that this cup be passed from their lips,” but yet they continue, each one a volunteer. We may not all agree about WHY, but we must all agree to support our men and women in Uniform.

I also give a sincere and heart felt thank you to all of the men and women past and present who have given of themselves to make our country great. Thank you for your patriotism, pride, bravery, and dedication to keep America free. I salute all of the fallen for their ultimate sacrifice. I pray that the Almighty will provide peace to their loved ones.

Happy Memorial Day!

Andy and Beth

Day 45--May 24, 2009

2009-05-25T00:05:00.001-04:00

Beth and I are exceptionally pleased to relay to you that Katie is increasing her milk intake daily. Most of her feeds today consisted of 70ccs or more. This morning at 5:00 am she took 90ccs! That is 3 ounces! Keep in mind that exactly one week ago today we were begging her to eat 30-45ccs over a thirty to forty-five minute period. It has also been exactly one week today that her naso-gastric tube was removed, and we had to prove that we could get her to eat before the doctors would entertain the idea of us bringing her home. It only took Katie about 20 minutes this morning to devour that 90ccs! Boy would those doctors and nurses be proud!

We thank the Lord everyday for the ever increasing speed at which she improves. She is also a relatively good sleeper. Each night since she has been home, she has only gotten up once to be fed. Last night she slept for a five hour stretch. That may be the longest uninterrupted amount of sleep that Beth has gotten since Katie was born!

Our boy, Michael began at nine weeks sleeping all the way through the night. I wonder how long it will take Katie. We do not mind the middle of the night feedings simply because we are the ones feeding her and we are in our own home! We have learned though that Katie is going to be the messy child. Michael hardly ever spit up or wet out of his diaper. Katie requires several clothes changings a day. We attribute this to her tiny size.

While Katie did not grow in weight over her six weeks at Duke she did gain about one and a half inches in length. This makes her a little bean pole. She has the tiniest little hips with little butter bean butt cheeks. Premi diapers fit her waist just right but are not long enough, and new born size diapers are long enough but swallow her whole. Both sizes fit her so poorly that neither do a good job of containing very much.

This is still a small price to pay, in order to have her home.

Beth and I were able to return to Church this morning, and were very pleased to do so. It felt good to “warm” my old pew again. I normally teach the “20 something” class there. I think the official title is “Young Adults,” but I have been a bit preoccupied and out of place for the past few weeks.

This whole event has given me a completely different outlook on life and faith in general. I believe that knowledge is power (I may have said that before….oh well), and I have been fortunate to gain a much greater appreciation for the little things in life. I have learned so much about God’s love and the power of prayer in this trial. I learned how much Beth and I were loved by all of you. My eyes have seen a lot in the past 6+ weeks, and I will never forget it.

Please keep in mind that all updates for “Katie’s Story” will be put on her blog site after Wednesday. If you sign up to be a follower you will receive an e-mail from her website every time that there is an update. For those of you in the Harnett county School system, I was able to appeal the block by sonic-wall, and “Katie’s Story” is now categorized as Health and therefore kid friendly. In short, “Katie’s Story” is no longer blocked by sonic-wall.

Hopefully our days will continue to be as uneventful, save those events of normal parenthood

God bless you and keep you all!

Andy and Beth

Day 44--May 23,2009

2009-05-23T22:04:00.002-04:00

Yet another wonderfully dull day! Katie has come so far in the past week. Today she has remained alert and active most of the day, albeit a bit clingy. She has really learned what to do with a bottle, and we are very certain that we will never need to insert a naso-gastric tube into her ever again. She has already greatly exceeded the minimum intake that we were told was so important. The smallest amount that Katie has eaten today has been 64ccs. She has finished off three bottles with over 80ccs since this morning!

I told you these updates would get boring. Papa John and I spent most of the day trying to put the last “window dressings” on the WWII jeep that I picked up in December. My intentions were to have it completely finished and up and running for the Coats Museum WWII exhibit grand opening tomorrow (May 24th 2-5pm). Ideally I had planned to be able to give rides on a real WWII veteran, alas; Katie’s story put this project behind by about six weeks. So for the display tomorrow it will just have to look as good as we can get it in the short amount of time we had today. Driving it is WAY out of the question.

My sister-in-law Denise, came to visit today bearing a hearty pot of chicken-pastry (those of you who are so unfortunate to live in an area where such cuisine does not exist, are sorely deprived. Also I am not talking about dumplings either). Denise is also recovering for rather extensive surgery, but has made a remarkable recovery as well.

I often said jokingly while Katie was still at Duke, that if Michael could just get into that ICN and TCN he could really show Katie how to eat. Let me tell you that today he did put away some of Denise’s pastry. At one point, as I was taking a break from partaking of some myself, I noticed that he had spoon and fork in his mouth at the same time. He had one in each hand, and was making quick work of this southern delicacy. Katie must have been watching, because she soon after polished of her largest volume of milk yet; 85ccs!

Beth and I are really excited about being able to attend Sunday services again tomorrow morning! Nanna Joan is going to come and keep Katie for us to be able to go. We are looking forward to seeing our Church Family again. I wish we could take baby girl with us, but the threat of sickness is too great.

Gathering with people of like faith is important. When we call our church family, “family,” that is exactly how we feel. Just like being in a blood bound family, we may not always see eye to eye, but we love one another. Our church families are also bound by “blood,” the blood of Christ. We are the body of Christ. We do no always share the same perspective, but we all share the same purpose, to function as one body serving our God.

In his first letter to the Church at Corinth, the Apostle Paul described the family of God as a “body.” Chapter 12 verses 12-14 read; “12 For as the body is one, and hath many members, and all the members of that one body, being many, are one body: so also is Christ. 13 For by one Spirit are we all baptized into one body, whether we be Jews or Gentiles, whether we be bond or free; and have been all made to drink into one Spirit. 14 For the body is not one member, but many”

In the end of this section of his letter Paul also states in verse 26 “And whether one member suffer, all the members suffer with it; or one member be honored, all the members rejoice with it.”

Just as Beth and I felt whole when we brought Katie home to be with us and Michael, so shall we feel whole when we can rejoin the “body” of Christ tomorrow at church. We could only be happier when we can bring our little angel to meet the rest of her “family.” Just as Paul wrote, I know that our natural family and our church family has suffered and rejoiced right along with Beth and I in the ICN and TCN. If you do not belong to such a “body,” then you are missing out!

There shall be a family reunion at Lee’s Grove tomorrow!

God bless you all!

Andy and Beth

Day 43--May 22, 2009

2009-05-22T23:40:00.002-04:00

Katie’s story today began around 3:00 am, when she woke up for her first feeding of the day. We already had her milk prepared so it was only a minute before I had her scooped up and eating. Since it was the middle of the night, and apparently Katie wanted to go back to sleep as badly as daddy, I could only manage to get her to take about 37ccs. Once she had her fill of the bottle she quickly dropped back off to sleep. Being super dad, I changed her diaper, and re-swaddled her into a tight little roll, and gently placed her back in her warm cozy basinet by Beth’s side of the bed.

This adorable and sleepy little girl did not get up again until around 7:00 am. She has already beaten Michael’s record! We had to get up twice a night with him. At the 6 o’clock feeding Katie quickly consumed 60ccs like it was nothing! Over the course of the day she regularly took over 50ccs per feeding. Once she even took 83ccs! That is nearly 3 ounces! It is amazing how far she has come in just five or six days.

Katie also had an appointment today to see her pediatrician for the first time. This visit yielded some interesting information. For the first time since Katie was born she has met her birth weight. Today she weighed 8 pounds one and a half ounces. Way to go girl!

As far as those percentile things go, Katie is in the 10 percentile for weight and 25 percentile each for length and head circumference. She is little but she is growing. The best part is that she is growing at home.

Feedings have gone well and we have already exceeded the minimum daily intake that we were required to get in her either by mouth or by n-g tube. I don’t think we will need those n-g tube supplies! Thank God!

Sorry this update is so brief, but little Miss Katie has decided it is time to eat again!

Andy and Beth

Day 42--May 21, 2009

2009-05-21T21:41:00.002-04:00

It has been hard to truly settle in at home over the past 30 hours or so. It all seems too much like the dream that I have been wishing would come true for the past 6 weeks. It has been wonderful!

Honestly it has been like bringing a new born home. If you could have edited Katie’s story and removed everything between 3:00 on April the 9th, and 4:00 on May 20th, I think it would have been just like this. She does not look like a child born with a life threatening birth defect and she does not act like a child born with a life threatening defect. Also since she is still below her birth weight she does not have the heft like a normal 6 week old would have acquired. It is almost like she has started over.
We may actually even remember and celebrate her “coming home” day, as it was far more joyous than her birthday.

We have the normal feedings every two and a half to three hours, diaper changing, burping, and of course the occasional eruption from one end or the other. It has been great! Our only problem is juggling all of these prescriptions. Some have to be given every four hours, some every 6, others twice a day, and even others only once per day.

Anyone who has seen my office knows and understands that I have a filing system that no one but me comprehends. I know about what pile a form is in and at about what depth most of the time. Pfffffghhhhh who needs file folders? However in this situation I, yes the organizationally challenged Agriculture Teacher, have made a spreadsheet. GASP! I’ll give you a minute to catch your breath.

This wonderful piece of managerial documentation will now enable us to keep up with when feedings were, how much she ate, what medications she was given and in what amounts. There is even a column for diapers, M=messy and W=wet! Whooda thunkit?

We are supposed to keep up with the feedings and the diapers for the doctor any way. This will help us remember the medications as well.

We would like to say thanks for all of you courteous followers of Katie’s Story. We have had a very quiet and peaceful day which we have used to acclimate Katie to home as well as ourselves.

Katie has been eating well considering that just 5 days ago we were begging her to eat 30-35ccs. Today she has been eating 45-60ccs every feeding. She has begun to look forward to the bottle. We give her all she will take in hopes of facilitating her continued growth.

It is just as important for Christians to desire grow in Christ as well. Just like Katie, we cannot eat just one big meal and expect to flourish. We must desire to learn God’s word, and be in His will so that we may grow in our faith and spiritualism.

1st Peter 2:2 reminds us the we should “As newborn babes, desire the sincere milk of the word, that ye may grow thereby.” We cannot expect to feel the fullness of our souls or the continual warmth of God’s presence if we let our “stomachs” get empty. Just as Katie has begun to cry and weep for her fill of milk, we to should have an overwhelming desire to “digest” some of God’s word on a regular basis.

God Bless!
Andy and Beth

Day 41--May 20, 2009

2009-05-21T00:57:00.005-04:00

Katie’s Story went on the Road today! We are now updating you on her condition from the comfort of our own home! It feels so good to have my wife, my son, and now my daughter with me in our home!

As we were leaving I called my mom and dad and told them that we were leaving Duke with Katie and that she was now wireless and tubeless, but covered in cuteness! Today is six weeks to the day that Katie was born. And interestingly enough it was nearly six weeks to the hour that the decision was made to send her to Duke! We left the parking lot at 4:00 pm on the dot! Katie slept the whole way home!

Let me back up a bit. This morning as I opened the garage door to back our trailblazer out, I heard a familiar and booming voice shout from a distance, “Hello Mr. Andy!” When I looked for the origin of this early morning greeting, I was pleased to discover that it was Frank Harmon, Bennie’s brother. He had come down from Broadway to help Mr. Bennie work on the little rental house across the horse pasture. All the while knowing the answer, he asked “where are you going?” I quipped right up that “I have heard that they are giving away little girls at Duke today from the scratch and dent section, and that I think I’ll go get me one. Do you want me to pick you one up while I’m there?” Of course having grown children of his own, he gracefully declined with a chuckle.

This small interaction between family and friend set the jovial tone for the remainder of my day. As Beth and I drove the 6+/- miles to take Michael to daycare there was an almost tangible feel of excitement and anticipation in our car. Michael was even taking part in our little “joy” ride. Once we had deposited him into the capable and caring hands of Mrs. Judy West, we headed for Durham. Along the way we made a brief stop at Target to get some much needed supplies that we had not been able to pick up lately. Items like diapers, wipes, those special little bottle nipples that we did not have, and of course that cute little onesie that Beth could not pass up for the price! Within half an hour we were back on the road.

When we got to the TCN the place was buzzing in anticipation of our departure. There were people there to see us off, and give us our updated appointment cards, provide yet more documents to sign, etc. One of the first things we were able to do was to feed little Katie. In three days time she has gone from reluctantly eating 30-35ccs to eagerly suckling down as many as 65ccs! Her thrush is nearly gone, and she is not afraid to work over a bottle of “Mother’s Finest.”

Once our morning feeding was over we were sent to the hospital pharmacy to pick up Katie’s considerable prescription. No kidding it took a paper grocery bag to carry it all in! I will try to take a picture of the small pharmacy that we brought home and send it out tomorrow for you all to see. We are not complaining though, if this is what it takes to bring her home, we’ll take it.

We were met at home by our parents, Michael, and plenty of pink balloons and several yellow ribbons. It was a wonderful homecoming! Michael was pretty excited to meet his little sister and spent several brief minutes to look her over before attempting to rock her. Then it was off to play. Pretty much he was content just to play near her this evening unless she cried then he was ready for us to pick her up and do something.

This was just what Beth and I have waited for. Hopefully Katie’s Story will now begin to become somewhat boring, So here is what I propose. Rather than clutter your inboxes with reports of “she’s doing fine” I will continue to give daily updates for the next week by e-mail, then all updates will be posted to her blog site unless you specifically request an e-mailed version.

We thank each and every one of you for your support through this adventure. Thank you for reading the volumes of my ramblings. Thank you for your prayers, your tears, and the compassion that you have shown to my family. There will be no way that Beth and I can ever repay each of you for efforts. Please continue to pray as we now embark on the next series of adventures with the very frequent follow up visits with her regular pediatrician and Duke. We will be traveling as much as twice a week for visits in the near future.

God Bless! And we Love you all!

Day 40--May 19, 2009

2009-05-20T00:12:00.000-04:00

Praise the Lord! With His blessings, hopefully this will be the last update that I have to send while our Katie is a patient at Duke University Medical Center! After exactly 6 weeks she will be coming home! Michael will finally get to meet the little sister that he has only heard about. Now she will become more than a name or a photograph to him. His excitement was shown tonight when we told him that she was coming to live with us on tomorrow! In true two year old fashion he promptly began to say “Wow!” and “yay” while jumping up and down. Does he really understand the significance of this statement? I don’t think so, but I do know that he reflects what he sees and feels from momma and daddy. He has proven this over and over the past six weeks. As mentioned before, he is a very good barometer of our feelings. They (our feelings) seem to manifest themselves into displays of exuberance or melancholy through our son. Beth and I then had to learn to manage our display of emotions around him. Michael is still smarter than we give him credit for and he soon picks up on them anyway. Therefore I think that his little dance of joy tonight was genuine, not only for him, but for Beth and I.

Our day with Katie was spent signing papers and talking to waves of people that we have never seen. We acquired dozens of medical items that we will need to continue Katie’s care at home. Some of these items ranged from simple stuff like tape and long wooded Q-tips to replacement naso-gastric tubes and even a stethoscope. Katie has been prescribed a nebulizer that she must use twice a day. It is the cutest thing. It looks like a hard plastic Panda bear bank or something. When it is sitting on a dresser or table you would think it was a toy. It even comes with a cool little pacifier that while Katie suckles it the nebulizer mist is flowing through a hole just below her nose so that she can inhale it properly.

While Beth and I were at Duke for several hours today, it seemed to fly by very quickly, all except one part. We both had to not only learn how to theoretically insert and remove a naso-gastric tube, we had to practice……..on Katie. While Beth is a registered nurse and has done this procedure countless times on adults this was her first time with and infant, and it was hers. She had a really hard time to begin with, and Katie fought like a banshee, but on another attempt Beth got it placed well and relatively quickly. This did not stop Beth’s tears from flowing as Katie voiced her displeasure. I could only watch and dread my turn. Luckily though I am quick study, and was able to place the tube correctly the first time. It goes against all human nature as a parent to intentionally do anything that causes discomfort to your child, except perhaps discipline. This naso-gastric insertion went against every parental instinct I had; those instincts that are hardwired into our subconscious about protecting and sheltering your little one. Katie was still in a relative fit, but I kept telling myself that this was one more step closer to going home. I also told myself that this was for her own good and mine, and this event was a mere shadow of the former discomforts that she has already endured. After Beth, the nurse and I had checked for correct placement each by pushing air through the tube with a syringe and listening for the bubbles or “whoosh” sound in Katie’s stomach by using the stethoscope, we were allowed to remove the awful thing.

With all of that said, we are praying that this was the last time that Katie will ever need a naso-gastric tube. It would seem that once the tube was removed for her to stay in the “care by parent” room with us on Sunday that she has eaten well enough to not have to have one replaced. Who would have ever thought? She even did so well last night in our absence that the decision was made by her doctors to send her home without one! That’s right loyal and faithful prayer warriors, when we bring Katie home it will be as a perfectly healthy seeming child. No one will be able to look at her and tell that she had spent the first six weeks of her life in intensive care.

However, we are not to be misunderstood when Beth and I tell you that she is still a very sick little girl. I know and understand the amount of love, generosity, kindness, and concern that have been shown by many of you, and that you all want desperately to see this little scarred angel. Nevertheless, even though Katie’s story is moving from Durham to Coats, Beth and I need you all to understand and honor our requests about visitation in order to make as easy a transition home as possible. We must also restrict some visitation for a while in order to preserve Katie’s health and wellbeing. A simple cold is a mere hindrance and inconvenience for most people. For Katie a simple cold could mean weeks in intensive care again, or worse. So, below you will find some of the guidelines that we were suggested to follow when we get home. Since these “suggestions” are from the people who saved Katie’s life they must know what they are talking about. Beth and I have agreed set these suggestions up as rules until further notice so please bear with us, as we only have Katie’s best interest at heart, and we know you do as well.

We ask that there are no visitors others than immediate family until at least next week.
We ask that ANY and ALL visitors call before just showing up. Keep in mind that Beth especially will need to sleep when the baby sleeps, unless she is pumping.
ANY and ALL visitors must wash their hand thoroughly in order to reduce the risk of spreading any viruses to Katie, remember she only has one and a third lungs.
Per Doctors instructions, there are to be NO children around Katie, except Michael since he lives here. We cannot attend any gatherings or birthday parties for quite a while.
We cannot leave our house with Katie until further notice, except to take her to the MANY follow up visits with her pediatrician and Duke. We are sorry that we cannot attend your functions or even Church as a family.
We cannot and will not play “pass the baby,” Katie is still below birth weight and excessive and unnecessary movement burns precious calories needed for her to grow. Until further notice most visitors will have to content themselves to admire from afar.
Those who just cannot stand to not touch her or give her just a little smooch are requested to only play with or kiss the back of her head and her feet, as these are the least likely places that she can get viruses transferred into her mouth or nose. ABSOLUTELY no face, check, or hand kisses per doctors orders.
IF you have been sick, IF your spouse has been sick, IF your kid(s) have been sick, please wait until ALL of the symptoms of that sickness have been gone for at least a week before attempting to visit. Again, Katie is very susceptible to infection.
If in doubt, CALL First! Please don’t be offended if we ask you to wait a couple of days.

Those of you who know us remember that we let anyone and everyone hold Michael without so much as a grimace. We are not normally “germaphobes” or “nervous Nellies,” but we have just spent six weeks at Duke and do not want to go back!

Even with all of these conditions, which affect us most of all, we are still excited about bringing our baby home. One of the first things we want to do is get a quick picture of all four of us together at last. We will then post it for your viewing pleasure.

We are keenly aware that this has been a terribly trying time for us, but it has gotten better. In the beginning we put our faith to the test. It is easy for those pangs of doubt to creep in. As humans we have all faced uncertainty, loss, and grief. However I can tell you that April 9th, the day Katie was born, was supposed to be one of the happiest days of my life. Instead April 9th and 10th quickly turned into the worst days of my short 34 years. Even through all the potential despair, God’s words and blessings have pierced the thick cloud of doubt and given us that thread of hope that we have so perilously hung upon. Those threads have multiplied and through continued faith and prayer, and we have braided them into a sturdy rope. In Deuteronomy verses 29-31 we learned that things can get bad,“29 But if from thence thou shalt seek the Lord thy God, thou shalt find him, if thou seek him with all thy heart and with all thy soul. 30 When thou art in tribulation, and all these things are come upon thee, even in the latter days, if thou turn to the Lord thy God, and shalt be obedient unto his voice; 31 (For the Lord thy God is a merciful God;) he will not forsake thee, neither destroy thee, nor forget the covenant of thy fathers which he sware unto them.”

I pray that in times of trials, tribulations, and uncertainty, that we remember where to “seek” to find that thread of hope, with the promise that God will not forsake us. He will give us the strength to power through!

God bless!

Day 39--May 18,2009

2009-05-18T23:11:00.000-04:00

I know that on day 11 of Katie’s Story I said that “Our day started, for all practical purposes, yesterday.” I really thought that was true statement until today. I can honestly say tonight that my day did start yesterday. If you read day 38 you will see that we did not get to bed Friday night until after 1:30 a.m. and then got up yesterday morning about 6:00-6:30. We did not know that once we got to Duke we would not be coming back. As I mentioned yesterday, we were allowed to keep Katie all by ourselves in the Care by Parent Room. This was absolutely wonderful except there was little sleep to be had.

At present, the best that we can figure is that Beth and I got about five hours of sleep between us since Saturday morning. No one can sleep in a hospital! The baby was doing her job, and we had to feed her every two to three hours. Keep in mind that Beth has to pump milk every three hours as well. Also since Katie is not real good at this eating business it sometimes may take an hour to get her to eat one and a half ounces. This child is going to be extremely labor intensive until she learns to eat properly. We are not complaining and it was a joy to have her all to ourselves! We are thankful for every drop of milk we got her to drink, and for every minute of sleep that we exchanged for precious moments in the dark holding our baby.

Katie responds real well to Beth and I, relative to the nurses, when it comes to feeding. Over the past 36 hours we have managed to get her to take several 40+cc bottles and three that were over 50ccs! Keep in mind that this is work for all of us, and many times Katie is wet with sweat by the time we are done.

Even after 39 days Katie is still below her birth weight. The nutritionist tells us that the energy needed to breath, suck, and swallow is actually exercise for Katie. Basically she burns about as many calories while eating as she takes in. That is why it is so important for her to keep taking larger volumes in a shorter period of time.

As we look back over the past weeks, it was not too long ago that we were jumping for joy when she ate double digits like 10-12ccs, and now we are achieving over 50ccs on occasion. She is making progress, and we are proud of her.

Apparently we proved to the nurses and doctors at Duke that we did indeed possess the ability to provide for her care around the clock, and they have offered us the following option. We, meaning Beth and I, must take a class on inserting as well as maintaining and caring for a naso-gastric tube. Not only will we have to take the class, but we will have to insert an n-g tube into Katie. Katie will come home with this tube, but it is for “back-up” only. That means that if for some reason she does not get in her minimum amount of milk volume required for one day by mouth, then we will have to put the remainder through the n-g tube. If we can prove that she will consistently take in the daily minimum or more then we can remove it, probably within a week or so.

Since Beth is already a Registered Nurse and CPR trained, she was ok, but I also had to take and infant and toddler CPR and Heimlich maneuver class. We will also have to go over a lot of ground rules about visitation and people around Katie when we get home as well (more on that another day), but we are tentatively scheduled to come home on Wednesday! That will be exactly 42 days or 6 weeks after she was born. We are so excited that we can hardly stand it.

We are both physically exhausted, not just from the last 39 days, but from the last 48 or so hours, however our jubilation cannot be subdued. We were told by the nurses though, to not tell Katie, as that always made them do something screwy and mess the whole thing up. We have taken their advice and have not mentioned it to her. For Katie, it should be a surprise.

We are comforted that strength comes in many forms: metal, physical, emotional, spiritual etc. Isaiah 40 verse 31 promises “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Beth and I daily strive to do the Lord’s will. He has promised that he will not put more on us than we can bear. We have spoken at length with other parents in the ICN and TCN at Duke whose precious babies have been hospitalized much longer than Katie, and may continue to stay long after we are gone. It would seem that the burden of this stress would be more than many could bear. Perhaps these parents, we, were chosen to have children in this condition in order to spare another set of parents who may not have the strength in any form to endure this exhaustive experience. I know that the Lord has renewed our strength daily, not just physically, but emotionally, mentally, and most definitely spiritually. How anyone can see these little miracles, and then declare that there is no God is beyond my scope of comprehension.

Thank you oh Lord for the gift of your strength, which enables us all to get through situations that seem hopeless!

Andy and Beth

Day 38--May 17,2009

2009-05-18T16:10:00.002-04:00

What a crazy day we have had!The Lord works in mysterious ways. When Katie’s Story first began here at Duke, we were in the Care by Parent room anxiously awaiting any news at all. Then about four days later when we were asked to leave the Lord blessed us with use of the wonderful Parker Reese Foundation house.As mentioned in previous updates, Parker’s house is a true haven for those bereaved and weary as a result of children with CDH. I would be terribly amiss if I did not give this home away from home and its foundation members all of the accolades possible. With that said however, Beth and I felt compelled to move back home today in order to try to return to our old lives as much as possible. In order to facilitate this decision Beth and I spent much of last evening packing the last of our belongings and cleaning the house. We got to bed about 1:30 this morning. We had planned to get up early and come to see Katie and speak with the Doctor about our plan to expedite her departure, and then after her morning feeding we had intended to go back to Parker’s house and finish getting our things and meet with Ashley and Jessica Singletary who were planning a visit. As the old adage says: “the best laid plans of mice and men…..” Well you know the rest.We were a bit surprised that when the doctor came to do rounds this morning, it was he who approached the subject of us leaving and not us! We were a bit shocked! He said that all she was here for was for feedings, and that we were proving that we were willing to work with Katie. He suggested that Katie’s naso-gastric tube be removed and we stay in the Care by Parent room and have total control over Katie’s feeding and care just like we were at home. If Katie can prove that she will take in enough fluids then we can begin the transition home.Do I need to repeat that last word? HOME!!!!We have got to make sure that she gets in at least an average of 45ccs per feeding. This has proven to be quite difficult tonight though. This is because her thrush has come back with a vengeance. Katie was finally prescribed a drug called Genetian Violet. It was painted on the inside of her mouth. She looks like she has bitten the end off of a navy blue/purple ink pen and sucked the ink out. It stains quite deeply, but is supposed to be the cure-all for Thrush. We are again attributing Katie’s lack of intake today to the recurrence of the thrush. It could not have happened at a worse time. We really need to prove we can do this tonight.If Katie cannot consume all of her feeds and meds orally, then her naso-gastric tube will have to be reinserted. While this is not optimal we will be able to have a couple of in-services on the uses and precautions of the tube, yet still be able to take her home later in the week.We hope that she can prove her mettle tonight though. We did manage to get one 53cc bottle into her! Then we dropped back off to 35ccs, we’ll try again in about two hours. It is still a quite vigorous fight, but we are gaining ground!Needless to say we did not get back to Parker’s house this afternoon, Sorry Jess and Ashley! We also had to send Nanna Joan and Papa Bennie by the house to pick up our things, but it has all worked out.I think it appropriate that Katie’s Story here started in the very same Care by Parent room that it may end in!Either way we can now see the light at the end of the tunnel, at present it is partially obscured by the fog of uncertainty, but we do see light. And we are Praising God!Psalms 47:1 “O clap your hands, all ye people; shout unto God with the voice of triumph.” Friends let me tell you; if we go home this week we can rejoice unto the Lord with a voice of triumph! We must be cautious to not forget to thank the Lord for His work. We must give credit where credit is due. So often people will pray and ask God for something and then be ashamed to mention his name after the prayer is answered. Jesus tells us in Luke chapter 9 verse 26: “ For whosoever shall be ashamed of me and of my words, of him shall the Son of man be ashamed, when he shall come in his own glory, and in his Father's, and of the holy angels.” Lord we will never be ashamed to mention your works or give you thanks!

Day 37--May 16, 2009

2009-05-18T15:58:00.002-04:00

Today was another good day. Katie better watch it, she is spoiling ol’ mom and dad. We are beginning to expect great things. Truth is, we are just barely getting to that magic number of 40-45ccs of milk taken orally. Also unless we feed her, the nurses can only get her to take 15-30ccs, rightfully so though. These nurses are working so hard to tend to all of these hapless children that they do not have the luxury of sitting, begging, and cajoling Katie to eat. Quite frequently another child’s monitors will sound, and the nurse will have to go to that location.Today Beth and I managed to get 37, 42, and 43ccs into Katie. These numbers, while still relatively small, absolutely demolish the 4s, 5s, and 10s we have been accustomed to.Beth and I take great pride in being able to get her to reluctantly take 40+ccs most feedings over the past two days. However, believe you me, it is a down and dirty scrap to get her past the 20 something mark. This parental fortitude and passion has been noticed by the regular nursing staff. Twice tonight, by two different nurses we were asked “Why are you still here?” Our reply is a simple but honest “We don’t know.” We were told that the only reason she was still here that they knew of was for feeding, and that we had shown we were willing to fight to get her to do what few if any of the nurses could. It was suggested that we speak to her attending physician and see if he would consider letting us begin the process of taking her home.Since Beth is a Registered Nurse she is just as qualified as any of Katie’s current care givers. Beth has experience with Naso-gastric tubes as well. We are hoping that Katie’s doctor will consider letting us take some informal instruction on how to care for Katie with the n-g tube, and even perhaps let us keep Katie for a day or two in the “Care by Parent Room.” This is the same room we stayed in for the first four or five days when it wasn’t clear if Katie would make it. We would be much happier staying in this room again for the reason being discussed. While in this room, we could be periodically observed in our care of Katie, as well as being able to report the volume of her milk intake. We are supremely confident that if there are no other underlying issues which would necessitate her remaining at Duke that we could provide the nearly the same level of care at home.We do hope that the good doctor will consider this request, but are also entirely ready for his hearty refusal. While are extremely ready to take her home, but we are still practicing patience and only want to take her IF she is ready. This will also be made clear during our meeting in the morning. Even if this request is honored it could still be at least a week before we would expect to get home, so don’t get too excited.One issue that may prevent our success with this route was the discovery of a peculiar lump about the size of a small egg (picture a boiled egg halved the long way, flat side down) which appears just below the scar from her surgery. This lump is only visible when she it crying or really tense. At first we thought that it was a hernia and some bowel had poked through below the incision site and was just below the skin, but as soon as she settles down it disappears. Once attention of this was brought to the nurse, she called the nurse practitioner who called the doctor. It was concluded that this is probably a weak spot in her abdominal muscles just below the incision site. The regular surgeon is to check it out on Monday, as it was not deemed to be an emergency.Here we go hoping again that this lump is just weakened muscle that will correct itself, rather than being a condition that requires another operation to repair. What does the Bible say about hope? Psalms 71:14 says: “But I will hope continually, and will yet praise thee more and more.” We praise your name oh God for your blessings; We praise your name for these hopes! No matter what Lord, let your will be done, not ours!On another note, we received the attachment to this e-mail from our good friends Ashley and Jessica Singletary of the Parker Reese Foundation. It is a fundraiser to help sponsor Parker’s house where we have been living. Even though this is our last night here, this has truly been a home away from home and I am going to miss it. This fundraiser is simply a t-shirt sale. Each t-shirt represents the cost to run Parker’s house for one day. The goal is to sell 365 shirts, keeping this wonderful and God sent refuge running in the black for one more year! Please don’t feel pressured to order one. We just wanted to make you aware of this opportunity!

Day 36--May 15, 2009

2009-05-18T15:31:00.004-04:00

Wait a minute…………..What was that? Did you hear something?.......................Listen for it…………Could it have been?...................I think that was a “Click” I just heard! If a “Click” did not sound tonight then it was a VERY BIG “Tick!”After meeting with the Boss at work for my end of the year summative report, and then after that, working with a fine group of my colleagues to grade some Senior graduation projects I burned up the road to get to my loving wife and darling Katie. I was a bit later than normal getting here this afternoon but not too bad.In an effort to better manage our time and streamline our nightly visit we chose to eat in the Hospital Cafeteria. They offer a pretty good meal there. As sad as it sounds we have sometimes even gotten take out from there. Who does that? Hospital takeout!? Don’t knock it.Before I get into the “meat” of tonight’s story, I feel it pertinent to tell you that we have decided to move home “piece-meal” (ok I’ll stop). When I went home last night with Michael I took all of this clothes, toys, etc. Joan moved out today and will be keeping Michael tonight and tomorrow. Then mom and dad will have him for Saturday night and Sunday. It will do him good to be back in Church.Beth and I have chosen to stay through the weekend. On Sunday evening we plan to entirely vacate the Parker Reese house, unless something happens and we need to come back, with the Foundation’s approval of course. This decision was made with much deliberation. We feel so fortunate to have been able to live here for the past 5 weeks, and have nothing but praises to sing, however this is not home. Since Katie has become so stable and is receiving such good care we have decided to go home and commute to Duke. It will mean even more miles on the car, but at least we can sleep in our own bed, and eat supper around our own table. Michael will be put back into daycare full time, and for him at least, life will return to normal. We are also hoping that there is more of “Katie’s Story” at Duke behind us than in front of us.This is going to be a bit of a sacrifice because rather than being able to make two or three visits per day, we are now only really going to be able to make one long one. Beth will be going everyday. Joan, Bennie, or mom and dad can go with her on Mondays, Wednesdays, and Fridays while I am at work. I still intend to take Tuesdays and Thursdays off so that I can go, and naturally Saturdays and Sundays. Presently I get to see her every day, as least for a little while. With this new setup I will not get to see her at all on Mondays and Wednesdays, and possibly Fridays. I am not going to like that, but we feel that this is better for our family as a whole.Now for the Katie update. We could not be more proud of our little girl if she had been accepted to Harvard or scored perfect on the SAT. Katie drank her entire prescribed amount of milk from the bottle tonight!Let me explain. Beth called with her update about 1:00 this afternoon and said that the Doctors had once again changed her feeding orders. Katie is to be fed only 45ccs every three hours. Whatever she can get by mouth is great, the remainder is to be pushed through the naso-gastric tube by syringe. This means that there is currently no more milk pump! For example: earlier today she drank 31ccs from the bottle before she quit. The remaining 14ccs were then put into a syringe and allowed to drain down the n-g tube by gravity.When we arrived in the TCN tonight we came with high hopes. The nurse, who like so many times before was entirely new to us and Katie, prepared Katie’s milk. Beth then took the initiative to set up the bottle and select the nipple to try tonight. For some reason Beth felt like she wanted to retry the fast flow nipple that Katie did not do so well on a week or so ago. Since I had been at work all day, I got to give it a try. Kate latched hold like a champ. If had closed my eyes I would have had a flashback to that little piglet Michael when he was her age. Katie pulled 20ccs out of that bottle in less than 10 minutes. Then she began to falter a bit. We stopped for a break and a good daddy two hand in rhythm burping (one hand on the back and the other on her bottom in a drum roll fashion. Works like a charm!) Once we tried again it was back to the old fight again. 15ccs slowly over about 15 minutes were ever so tenderly coaxed into her. We began to feel that old frustration beginning to creep back in. So we decided to give her another break, and have a diaper changing.With new “seat covers” in place we tried again. Very reluctantly, and with much fuss and fret Katie finally latched and emptied the remaining 10ccs in just a few minutes. We really didn’t know what to do. We both cried! Katie looked on, with a rather proud and pleased expression. She doesn’t really know what she has done, but five weeks and one day after being born she took her first full feeding orally!Beth went to share the wonderful news with the nurses. Each one was a floating nurse apparently here for the weekend shift and had never seen us before. They put on a fake smile and offered congratulations, but since they were not familiar with “Katie’s Story” they did not quite fully understand the significance of our exaltation. Their indifference did not dissuade us from celebrating with some empty bottle photos which are attached to this e-mail.This may have been the “Click” or as I said earlier at least a loud “Tick”. Either way we count it as another small victory in the battle to go home. We are hesitant to become too elated as we have seen so many times before, set backs frequently tread in the same tracks as progression. We hope that Katie has a good enough lead that she can not be overtaken again!This event has once again shown the power of faith, patience, and prayer. I am so thankful that God has chosen to give man the wisdom to facilitate His wonderful power of healing. I give thanks to the Health Care professionals who are helpers in this marvelous gift whether they know it or not. I give credit to God for this ability, this knowledge, and this technology.Most of us pray for things daily, however I think that we should not always pray for just random things, like “heal all the sick” or “save the lost.” Hebrews 4:16 says: “Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.” This is exactly what we have done, and what you all have done. We spoke Katie’s name, we spoke of her condition even though the Lord already knew. We came boldly unto the throne of grace with specific problems and asked for specific solutions. Katie is a powerful testimony to what can be done when fervent, honest, and sincere prayers are presented at the feet of our Lord.Perhaps Katie’s story has been a lesson in prayer?

Day 35--May 14, 2009

2009-05-18T15:30:00.000-04:00

Today was a day of almost stimulus overload. Information and events happened so fast that is was hard to process them all. So I’ll try to remember them as we go.This morning was another early rising for Beth and I. We actually snuck out of the house before Michael even got up. We made our way by Bojangles for a "hearty and nutritious" breakfast, which is always more work than it is worth. It would seem that this is the only establishment in Hillsborough that anyone wants to eat breakfast. The drive through line is normally out onto the side street and they have someone taking orders with a remote headset. For the past couple of mornings we have settled for somewhere else or no breakfast at all. This morning however, Beth had her dander up, and we pulled into the parking lot that was loaded to capacity. I just stopped in the middle of the full parking lot, and out she went into the eatery. In short order (pardon the pun) she was back bearing a hot breakfast. This seemed to make her day, as she had been longing for that Bojangles biscuit for days, but not willing to endure the hassle. Once this had been accomplished we hit I-85 running. We had completely devoured our morning sustenance, but had barely finished brushing the crumbs from our chins and shirts when we pulled into the parking deck. For some reason today Beth has been in what can only be described as a slow jog, power walk. I guess that 6th sense of motherly instinct had her in high gear and I was in hot pursuit. Little did we know what events and information that the morning would bring.When we entered the Transitional Care Nursery we were just in time to meet the speech therapist and to give Katie her morning bottle. After our nurse for the day completed her assessment and we changed Katie’s diaper it was bottle time. We tickled around Katie’s mouth a bit and got her to stick her tongue out. It looks much better than yesterday. Her thrush is not gone, and would still rate medical treatment for any other baby, but for us this is good! As soon as that bottle entered her mouth she went to work. In only a couple of minutes she had drained 20ccs from the bottle. Then the fight began. Over the next 15-20 minutes it was back to the old routine. We did manage to get her to eat 32ccs total before being persuaded to stop by the therapist. Beth and I were pleased with this amount. We were also happy that she did not cry at all and grunted very little. We are hoping that this is the beginnings of NO thrush!Before we had even finished feeding Katie, the Doctors made their rounds and saw her trying so hard. It must have made an impact because her orders were changed to now be fed every three hours and to try bottle feeding each time rather than every other time. We were also elated to hear that if she can consistently eat 40ccs by mouth for a day or two that they will remove the pump and see what she does. This will make her realize that all of her feeding must be done by bottle and that there will be none had otherwise. Her total volume per feeding should be 77ccs.This has really made our day, because now it gives us another goal to work toward. This does not give us a projected time for coming home, but it does feel like progress. This feeling is one that we have not genuinely felt in quite some time now.We also asked a day or two about her hearing screening as suggested by one of our friends, Donna. We found today, by Katie’s crib, the results of said test. It was simply a tri-fold with information about the screening and “Pass, Fail” boxes. Apparently Katie passed as the appropriate box was checked, however there was a hand written note that stated she was at risk for hearing loss and should be rechecked in 3 to 6 months. Thanks Donna for that reminder!The speech therapist has also tried several types of nipples as well, thanks to the suggestion of Mrs. Houston at the county office.So many parents have gone through similar situations that we are getting much valuable advice.On a sadder note, today in the nursery two cribs down from Katie, buzzers indicated that an infant had “crashed.” Several of these highly trained pediatric nurses quickly and professionally went to work about their business of saving this tiny little life. While Beth and I looked on, that dreaded “Code Blue” button was pulled, and alarms sounded. Doctors rushed in and “crash carts” were pulled from their convenient locations. The battle to fend off the strangle-hold of death’s cruel grip raged for several minutes. While these valiant heroes in lab coats and scrubs worked feverously, Beth and I prayed. Before curtains were pulled to obscure the efforts being made it was obvious that this child’s heart and lungs had simultaneously stopped. According to the monitors, for all practical purposes this babe had suddenly died without warning. Tiny and accurate little chest compressions and a miniature hand held bag ventilator were used to pull this infant from the brink of eternity. This time the fight was won, and the little one’s vital signs stabilized. However these breathless moments when our adrenaline was rushing, and we were overcome with the pains of empathy for the parents of this precious little one, served as a reminder once again about how precarious of a position many of these children are in. Once more we were reminded that we do not have to look far to find someone in far worse shape than we are. In this case it was about 15 feet.1 Thessalonians 5:18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.Thank you Lord for allowing Katie’s small progression today. Thank you Lord for sparing the innocent babe in the TCN today. Thank you Lord for your blessings both large and small. Thank you Lord for the blessings we do not see. Thank you Lord for the privilege of serving you!

Day 34--May 13, 2009

2009-05-18T15:27:00.001-04:00

I wish I could tell you that there had been some marked improvement in Katie’s mouth today, but that is just not so. Her thrush is identical to yesterday. Granted that means it is better than three days ago. She has continued to hold her own with the bottle feedings however. This morning Katie took 30ccs from a bottle, and 21ccs at the midday feeding. She suckled her largest amount at 5:00 with 40ccs and then 30ccs at 9:00. All of these were eaten under great protest by Katie. She has also begun to “shut down” and simply go to sleep when she becomes frustrated with our efforts. The therapist says it is a coping mechanism. Even though she is obviously not enjoying these suckling sessions, it is almost like she has a “Love-Hate” relationship with the bottle. For very briefly it seems to be comforting her, at least until it begins to hurt. Then she forces it out of her mouth with her little white tongue. In a very short time she will want it back, and eagerly latch for a couple of seconds. After several of these cyclical actions the pain is more than she can tolerate.Even though this routine is very frustrating, I am still in absolute awe at the tenacity of these children. As I visit the Intensive Care Nursery and the Transitional Care Nursery, I see children in all variations of conditions. I have seen several children who weigh less than one and a half pounds. There are scores here that weigh less than two pounds. There are children with tracheostomies, colostomy bags, gastrointestinal tubes, and urinary catheters, physical and mental disabilities. Even with all of these factors obviously against them, none of these children gives less than 150% of themselves to survive. I have seen firsthand in my daughter that pain is not a deterrent for these children from fulfilling their intrinsic desire to simply live. To live in any capacity for these children is instinctual. I may hesitate in the future to call any infant “helpless” ever again. These babes are equipped with something that many adults do not own; MOTIVATION. It goes without saying that these little ones do not posses any sort vocabulary that would enable them to comprehend the words “quit” or “give up”. This in and of itself makes them far less “helpless” than many adults. I don’t understand how I can ever again tolerate people who stop all forward progression, or who complain and quit because “things” are difficult. One only needs to take a quick, heart stirring, and tearful trip through these nurseries, to put our seemingly insurmountable problems back into perspective. Getting though the next cycle of bills, going to a undesirable job, or tolerating traffic jams are incredibly insignificant when compared to seeing infants ,whose age is measured in days, fighting like world champions to overcome obstacles that they can’t even comprehend. This fight is all they know. To them this IS life, and no matter how bad it is, LIFE is more precious than gold. No amount of treasure can persuade these children to surrender as they have no sense of value except for that next breath, that next heartbeat.We could all learn a valuable lesson from these little friends. We should learn to put things in perspective, our God, our families, our friends our nation. We can choose the order that we rank things, but we should not let ourselves be distracted from what is most important just because it glistens or provides esteem. We not only should take stock in the value of this life, but also in the life to come.John chapter 12 verses 25 and 26 redirect us in this regard. “He that loveth his life shall lose it; and he that hateth his life in this world shall keep it unto life eternal. If any man serve me, let him follow me; and where I am, there shall also my servant be: if any man serve me, him will my Father honor.”Our lives here may seem endless, but as we know all too well, this life is only fleeting. Some of these babies’ lives are truly measured in hours. 60, 70, or even 100 years is merely a stitch in the immense fabric of eternity. Lord please help me learn the valuable lessons being demonstrated by far better teachers than I. These tiny professors of endurance possess remarkable talents for helping me rank the priorities of this life in order to save my life eternal.

Day 33--May 12, 2009

2009-05-18T15:26:00.000-04:00

Our day started early today as we wanted to see Katie as soon as possible. We have made it our mission to be present at every feeding possible in order to learn Katie’s preferred eating style. Does she want to lay on her left side, or her right? Does she want to be tight and snug against you, or kind of loose? Does she want to be more elevated or more horizontal? We are determining her pattern or preference. Noting against the fine nursing staff at Duke, they are doing a great job, but Katie has had so many nurses that we feel that we know her best. The nurses try to bottle feed her at appointed times, but have other obligations than just Katie, and cannot put the spirit into that mom and dad can. We have the emotional connection and the parental drive to see her succeed. Beth has so far been able to get her to eat the most with yesterday’s feedings. However today we were back to the old battle again. This morning all we could get her to take was 12ccs; this evening 20ccs. Yet again though Katie proved that there was nothing wrong with her bowels as she once more “soiled” herself, the blanket, and of course Beth . “No worries baby, nanna will wash that out” we said. We were present when the doctors made their rounds and they seemed to think that she was doing well, except for her lack of weight gain. They prescribed more high-calorie formula to be mixed with her milk. Thankfully today her thrush did appear to be much improved but by no means gone. I think for a normal baby this would still be a really bad case, but for Katie it has reduced from absolutely hideous to moderately bad. We are praising God that at least her bad days now are still better than her best day a couple of weeks ago.Oh by the way, when they weighed her tonight she was up three ounces! Now she weighs 7 pounds 11 ounces! Five more ounces to be back to birth weight.Another motivating factor for getting there earlier than normal was the fact that the grandparents and great-grandparents were coming up again today, and rather than just playing pass the baby, we allowed them to stay as long as they wanted when they got there and we ran some errands. Beth and I fortunately took out some disability insurance last year, and it just so happens that it pays a small amount for mothers on maternity leave. So we journeyed over to Rex and had her doctors sign off that her motherhood was indeed a fact, and that we had a critical child. While in Raleigh, Beth decided that she needed to go and get a prescription filled at the “pharmacy”. Being as how I had not known of any medications that she had been prescribed I began inquire about these secretive medicinals. I quickly discovered that she herself had begun to show signs of withdrawal from a well known, yet legal drug, the Krispy-Kreme doughnut. After much complaint from the chauffeur (me), we took the time to “swing by” for a “Hot-Fresh-Now” doughnut. Those of you that know me understand that I am a “meat and taters….er..uh, veggies” king of guy (I like almost every veggie except for okra….yuk!) Doughnuts do not entice me in the least to take a detour. For Beth though they are pure nirvana. I can barely talk to her while she savors every warm sugary bite, by that time I am just a distraction. I may have Krispy-Kreme envy or jealousy I don’t know.Once we returned home (Parker’s House), I was greeted by the unmistakable aroma of home cooked food. Now my nirvana comes into play. As I entered the kitchen door, much to my delight was momma and MaMa McDuffie, whipping up a wonderful lunch. Of course these fine culinary artists cannot come to visit without bringing a taste of home. We had chicken pastry, black eyed peas, sweet potato casserole, corn, mac-n-cheese (no box here), BBQ, slaw, corn bread, and strawberry shortcake. I think I had to tell Beth to hush a time or two while I was enjoying this treat THAT I DIDN’T HAVE TO DRIVE 20 MILES OUT OF THE WAY FOR!After lunch, Beth and I discovered a mythical and almost unheard of creature whose name can only be whispered softly or it will flea in a panicked run. For the sake of not offending this marvelous and extremely rare being, I will only spell its name slowly.N…..A……P! Yes! They do exist!!! If we could have captured this fabled and legendary event on film we could have sold it to the tabloids!Once my time had run out for the day Michael and I packed up to return to Coats for the evening. As fate would have it there was a large wreck on I-40 that required me to take yet another detour today in order to get home in a somewhat timely manner. I had to take Highway 55 through Apex. This route is enjoyed by Dad and Mr. Bennie far more than I, however this detour coupled with the one I was forced to take earlier showed me God’s message for today.There are numerous accounts in the Bible about paths that people chose to follow and the resulting outcome. There is the story of Jonah, and then Saul later renamed Paul whose works in the God’s word are legendary. I believe that a person’s choices determine ones destiny more than chance. Sometimes our choices to take would-be detours are really what save us. We mere mortals do not possess the capacity to fully understand the depth of the Lord’s work. We must trust in Him and follow the paths that He guides us to take.Psalms 16: 8 “I have set the LORD always before me: because He is at my right hand, I shall not be moved. Psalms 16:11 Thou wilt shew me the path of life: in thy presence is fulness of joy; at thy right hand there are pleasures for evermore.”You know, I didn’t want to take that detour to Krispy-Kreme today, but I did, and it made my wife happy. I also didn’t want to take that detour down Hwy 55 today, but I did, and it got me home quicker. I didn’t want to take this detour by Duke Medical Center, but I did, and the outcome will be God’s will.

Day 32--May 11, 2009

2009-05-18T15:19:00.001-04:00

Today has been a fairly eventful day. I missed out on most of it since Monday is one of the days that I go to work at Triton. However this afternoon, just before the end of the work day, Beth called and told me that baby girl had eaten 41ccs for her! That is the first sign of improvement that she has had in several days. Later today she ate 21ccs, and lastly tonight we managed to get 26ccs into her. This is the largest single day of oral milk consumption since she has been born.We were also pleased to discover that it appears that her thrush seems to be receding a bit, however it may be wishful thinking on our part. To Beth and I this little “white coat” seems to not go all the way to the tip of her tongue anymore, as well as thinning in width from side to side. If you use your imagination a little bit, it also looks like it may be trying to part down the middle as well. Thank the Lord! The speech therapist was also by today and seemed to think that this was her major snag. Her opinion was that Katie’s case of thrush has crept down her throat as well. Hopefully once this problem is corrected Katie will not struggle so hard with the bottle. Katie does well at first and latches quite readily. After a few seconds though, you can see her little brow begin to furrow, and her eyes begin to reflect some discomfort. Soon after these indications appear, she begins to struggle. We have to provide her with plenty of breaks to recover. During this time she sticks her little white tongue out over an over, as if to try and get this invading fungus out of her mouth. We have concerns, and rightfully so, that she will begin to associate bottles with discomfort. We have read and heard several accounts of other babies who literally broke into tears at the sight of a bottle.Beth and I do not want to push the feeding issue that far, but at the same time we want her to not lose any ground. We set a goal that we want her to reach, most of the time it is 20ccs. We will then gently work with her until she gets there. If she shows signs continuance we tag along for the ride. I found out this evening that she has yet another issue. It has been discovered by Echo Cardiogram that Katie also has an ASD. This stands for Atrial Septal Defect. Basically she also has a small hole between the two top chambers in the heart that lets blood mix and flow improperly. Her case has been referred to as mild, and is apparently of little concern. Many of these little holes grow closed on their own. Our sources tell us that many people never show any symptoms at all. Most of the time if symptoms are present they are rare and small.During our long visit this evening I was again able to sing to her, and hold her close. She is such a pleasure to be around, and rarely cries. The nurses all comment on what a good baby she is. She is very content most of the time, and terribly observant. We hope that this trend continues whenever we get to bring her home. One of the recurring questions frequently asked of us is, “have they given you any indication of when you can come home?” The answer to that is a resounding no. Just tonight in random conversation with her caregiver, we picked up on the fact that the doctors may want to do another pulmonary function test in a week or two to see how she is progressing. While trying to retain my forbearance, I stifled the desire to shout “What??!!! in a week or TWO? Come on!” It seems that there is no end in sight. This would be much easier to deal with if someone would just come out and say “Ok guys, we’re planning to let you go home on the 4th of July.” At least that would give us something to look forward to. We are actively practicing patience and tolerance. We continually remind each other that we can’t rush things, and that we want her right when she comes home eventually. I can say however that I have noticed that my patience is beginning to get a little thin. Not with the hospital or the treatment of Katie, which have both been superb, but just in general. I find my self having to restrain from commenting about things that never before would have affected me. I am sure that I may have been a bit “short” with those around me, and probably to the ones I love most. My students have probably noticed this as much as anyone. If I have seemed a smidgen out of sorts lately, or if I have said or done anything snippy to anyone please forgive me. It has most definitely not been personal. I can’t think of anything in particular, but I am just trying to cover my bases.I have looked for God’s message to us today, and the only repeating theme was yet again patience. Romans 12:12 reminds me to be “Rejoicing in hope; patient in tribulation; continuing instant in prayer;” We are working on our patience Lord! Thank You for Your patience with me!

Day 31--May 10, 2009

2009-05-18T10:35:00.002-04:00

Happy Mothers Day! Of course it may be the day after by the time you read this, but rest assured it was written and sent on Mothers Day!Mommas are wonderful people. My momma, Irene, is and has always been good to me and my sister and two brothers. She has always given of herself above all things to her children and grandchildren. She and my daddy have burned up the highway between Coats and Duke to see their grandbabies, and to help act as a shuttle service for the great-grandparents. She has also spent many days digging through our house, garage, attic, or shed for things that we need brought us. I love you momma!Beth’s momma, Joan, has also been like a mother to me as well. She has offered,…there I go again understating things…I mean demanded that she move into Parker’s house with us, and bring Michael with her. She has been instrumental in keeping our little family together. Poor Mr. Bennie has been a virtual bachelor since this all began 31 days ago.Joan has washed more clothes in the past month that she cares to think about. Hers, mine, Beth’s, Michael’s, Katie’s, and Lizzie’s (the dog). We have still got to “iron” out some kinks when it comes to my unmentionables, but we’re getting through it. I love you too Joan!You all know how I feel about Beth so I will refrain from anything more than a hearty “Happy Mother’s Day” to all of you deserving mothers.Since we are talking about Mothers, I feel it pertinent to share with you all that the founders of the “Parker Reese Foundation” paid us a visit at Parker’s House today. Jessica and Ashley Singletary are the parents of the child whose name and memory has been honored in this great Foundation that has so graciously provided us with such a wonderful place to live while Katie is at Duke. A more wonderful and unassuming couple could hardly be found. They have dedicated their lives to providing help to families of CDH babies. The Parker Reese Foundation is devoted to researching the causes and cure for CDH, as well as early detection, dissemination of information, and parental support. There is no telling how much time and money this wonderful organization has saved my family. Beth and I will forever more be grateful.During their brief visit, it was nice to be able to recount each others stories of our children and know that while each family’s case is different, they are somehow the same. No matter the severity of each child’s condition, or the outcome, ALL CDH families can find common ground. We all love our children, we all want a cure to be found, and we never want another baby to have to suffer through having a Congenital Diaphragmatic Hernia ever again. Beth and I both feel very blessed to have come to know the Singletary’s, and have a deep respect for the organization which they have created in Parker’s memory. 1 John 3:17 reads; “But whoso hath this world's good, and seeth his brother have need, and shutteth up his bowels of compassion from him, how dwelleth the love of God in him?”The Singletary family, their church congregation, and all who help those in need display the love of God on a daily basis. As Christians we should always remember those who are less fortunate than ourselves. The spirit of compassion is a heavenly gift. These fine folks, like so many of you who have contributed to our family’s cause, have made a difference, just like the verse of Jude 1:22 “And of some have compassion, making a difference:” Beth and I look ahead to the day when we can “pay it forward” to the next family in need.Katie was in all things today, absolutely adorable. She has made no more progress toward recovering from the Thrush or toward eating from a bottle. However, she and Michael have been a wonderful medicine for Beth and me today. We were able to spend several hours with each child. We optimistically look forward to having them both together and home for Father’s day.The remnant of her umbilical cord has fallen off, leaving her with a cute little belly button. You know, we didn’t think that Michael’s would ever come off, but we hadn’t given Katie’s a thought. It was kind of a surprise when we noticed it missing during a diaper change.Since there has been no significant change in Katie, and I spent so much time talking about the Parker Reese Foundation, I will attach a of picture of the wonderful house that we are currently residing in as well as a couple of views from the front yard.God Bless you all!

Day 30--May 9, 2009

2009-05-18T10:31:00.001-04:00

I have mentioned a couple of times in earlier updates about how I love to sing my children, much to the chagrin of the nursing staff. Today I caught myself cheerfully singing “happy monthday to you, happy monthday to you.” Our baby is an entire month old today! Where have the past 30 days gone? We no longer measure our time in days but in events.As I reflect back upon Michaels first month, we had already made a trip to Forrest City to buy him a 1940 Farmall “A” tractor. Grandpa John and I have almost finished restoring it for him. Katie’s first month has been a bit less adventurous. I keep asking Beth when are we going to buy Katie’s tractor, but she suggests that I just fix up one of the other rusty hulks sitting in either our yard or daddy’s. We’ll see.Today was yet another day of noting to report. Unless you consider the fact that after 30 days you qualify for free parking! We’ll see to that first thing Monday! Katie, however, has been her charming and adorable self. She had lots of visitors today, in the way of grandparents. Granny Irene, Papa John, Nana Joan, and Papa Bennie all took their turns at attempting to spoil her more than the last.Of course Beth and I got in our fair share as well. We also try to be present especially during feedings, so that we can be a distinct part of that process. Her thrush is still very bad. Even with the aggravation and discomfort that must accompany this condition, we are still managing to coax about 10-15ccs of milk into Katie per feeding. This is less than half an ounce. We had one or two good days, but it seems now that we have just grabbed a rung in the ladder and are holding on. We do not want to go back, and we can’t go forward. There has been no change in her condition or feedings now in several days. It seems that we have landed on a plateau. We’ll keep walking until we get to the other side, frustrating though it may be.I feel it appropriate since it is Mother’s day weekend to thank my wife for the wonderful Mother that she is. She is constantly giving of herself to her family. Even when she doesn’t feel like it, she keeps going. Especially in this situation, she has somehow managed to find the strength, endurance, courage, and faith to press on. All the while not only displaying overwhelming concern at the bedside of our Katie, but also showing love for Michael, and me. She has fought exhaustion, frustration, depression, anxiety and loneliness and quite handily overcome them all. She has been able to essentially pick up and move to a new home at a moments notice, slowly heal from child bearing, play on the floor with Michael, entertain guests, prepare meals, pump milk, hold my hand, and still walk with pride and grace into that Transitional Care Nursery. Rest for Beth, has become a luxury rarely enjoyed.I am so thankful for her. I can’t imagine how I would have made it through this without her by my side. She exhibits all of the finer the characteristics of a God fearing, devoted and loving wife and momma!She asked me just moments ago, “couldn’t you wait to send out the update? There’s really nothing to say.” I simply replied “no.” Then she very understandingly said that she was going on to bed. I promised I would be right there.Tomorrow’s story hasn’t been written, but for today I would like to say, “Thank you Beth for being my wife, my best friend, my co-worker. Thank you for making me two beautiful and perfect children. Thank you for sharing the rest and best of our lives together.”Proverbs 18:22 reads: “Whoso findeth a wife findeth a good thing, and obtaineth favour of the Lord.”It is quite obvious that I obtained favor from the Lord when you married me. I love you dear. Thank you!

Day 29--May 8, 2009

2009-05-18T10:25:00.002-04:00

This evening as I exited the elevator from the parking deck and walked into the RT level, I looked for my old friend. Let me explain. Very early on in our adventure here I stepped out of that exact same elevator to begin the long walk through the rapid transit tunnel to the bottom of the hospital. One day as I started this familiar trek something caught my eye through a window located over the rapid transit shuttle. Keep in mind that his window is probably 15 -20 feet off of the floor, and is used more for a source of day light than for looking through. As I peered at this familiar object, which was indeed a typical everyday power/telephone pole with the typical everyday cross arms on it, I noticed that the way it was “framed” in the large window opening it looked very much like a cross.I have often stopped and reflected a minute on what this creosote and splinter covered log means. To many it is merely a utility pole, a nondescript piece of electrical hardware. To me on those very first days here, in its perspective through the window opening, it was a reminder of Christ’s love for me and all others in the world. It may sound cheesy to most, but to me it was instantly a sign that everything was going to be alright. Since that time, whenever I enter the RT level, and it’s light out, I look for my old friend and thank God that this little reminder is here. I took a picture of this symbol of love and hope today to share with you. It is merely a piece of lumber put to use carrying power. The cross that our Lord and savior was so cruelly crucified on was also merely a piece of lumber put to use. Likewise, it to was also carrying power. This power needs no cables or lines of aluminum or copper to reach its destination. On a daily basis I know that the power of his healing touch is reaching or little Katie. I also know that his power of perseverance and strength have been flowing into Beth and I. I know that his power for compassion and empathy has been flowing into the scores of people that will read this. I know that his powerful love can only be exceeded by his power for forgiveness. Katie has made no significant advances today, and has actually eaten much less from a bottle. Nevertheless she continues to grow in character every day. I honestly believe that she knows the voices, the touch, the smell, and even the love of her mother and I. She is such a joy to be around that it is hard to leave her. She will be officially one month old tomorrow (today for many of you reading this), and she has begun to be somewhat interactive. Once or twice tonight I actually got a “coo” or two. That will make a grown man’s heart melt. At least mine did. I feel the power of so many things these days. I know that too many right things have happened for it to just be happen-stance. I can feel the power of love from my wife, my son, my daughter, my family, you, and most importantly my God!2 Samuel 22:33 “God is my strength and power: and he maketh my way perfect.” This way may not be the way that we wanted, but it is the path that God chose for Beth and I to take. We will gladly walk this road hand in hand until we reach the destination that God would have us reach. He will grant us the power, and it flows though His power line!

Day 28--May 7, 2009

2009-05-18T10:20:00.001-04:00

As the old children’s blessing goes: “God is Great; God is Good!” Our little Katie had another good day today. Beth and I spent the morning and early afternoon with her today. At the 1:00 feeding Beth was able to get darling Katie to suckle off and on for about 30 minutes. In this time she did actually drink 37ccs of milk. This blew her previous record out of the water by 15ccs. Again for those of us who live in America, I have finally gone and figured out the conversion rate. It goes something like this:1 US ounce equals 29.573ccs or milliliters1 US ounce equals 6 US teaspoonsSo now with a little ciphering (which comes hard for we Ag teachers you know), the 37ccs that Katie drank today equals 1.25 ounces or 7.5 teaspoons. This not quite half what she is supposed to be eating per feeding. However for Beth and I we feel it is one more step closer to coming home.One of the speech therapists that works with Katie said that she has about figured out what to do and has the ability to eat normally. Her problem now is that she has a horrible case of thrush still. It seems to get worse everyday. Her little tongue looks like there is small white terry cloth towel lying on top of it. I have since discovered that thrush is actually a fungal infection resulting from the reduction of healthy bacteria, which were all killed off by the antibiotics she was on after surgery. Katie’s case of thrush not only coats her tongue, and portions of the inside of her mouth, but also down her throat. It is now believed that this is indeed the culprit that is preventing her from eating. It appears that the truth of the matter is that it is just too painful to eat.Katie has already been administered a full dose of one type of medication for about 4 days with no results. The medication was switched to a second type, which temporarily seemed to work, but now only seems to be feeding the condition. Once this prescription is complete, there are plans to “paint” or coat the inside of her mouth and throat with some purple topical ointment. I am no health care professional so I can’t give you the names of these pharmaceuticals, but if you have a true burning desire e-mail me and I’ll find out. We have discovered that if this purple ointment doesn’t work she may have to be put on some IV antifungal medication for several days.Now the prayer is for the “click and no thrush!” Today is 28 days we have been at Duke, and we are getting a bit stir crazy. However, we still have the knowledge that our little girl will be out soon and this will be in eternal past. Some of the children here who were born exceptionally premature will be here for many months. Two of my coworkers have experienced this first hand within the last 5 years. I can tell you all now, that parents of children born early have got to have the resolve of Job. I now have a much greater appreciation for what these parents are going through or have gone through.There are children in Katie’s ward who may never lead what we call a normal life, due to their defects. Even with all of the hardships we have faced, I can truly be thankful for our daughter. This experience has changed our lives for the better. I will never again lay my head onto a pillow without praying for children in units like this around the world. There will forever more be images of these scarred babies engrained into my memory and heart. Almost as an accidental discovery today, we noticed during a diaper change that Katie’s steri-strips have finally been removed. Three weeks and one day after her surgery we were at last able to see the incision site. It doesn’t look bad at all. It has healed quite nicely, and will most likely be hardly visible when she is older. I took pictures (of course) but the camera battery died tonight at the FFA banquet, so I’ll try to send them out tomorrow.As I do with every other day, I looked for God’s message to me today. As I thought back over the events of the day, and how many people I came in contact with, I realized that today I have, as with many other days, seemed “to pray without ceasing” as we are told to do in 1 Thessalonians 5:17. The odd thing was, that while I did pray for Katie and all of those babies, I also thanked God for each of you and the amount of effort that you have expended on our behalf in prayer, forwarding these updates, baking goodies, mailing cards, sending gifts and the other sweet acts of kindness bestowed upon Beth and I. So with that, I leave you with the follow verse as it is my prayer for you!3 John 1:2 Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth.May the countenance of the Lord shine upon you!

Day 27--May 6, 2009

2009-05-18T09:50:00.002-04:00

My trip back tonight was quite lonely. I am used to having Michael kicking the back of my seat, screaming for his “dawby” ( the stuffed dog he sleeps with), or having shoes mysteriously disappear. This evening was quite different. Nanna has gone home for the evening and offered to pick Michael up for the afternoon, and then keep him at her house over night. He will then have the opportunity to go to daycare again tomorrow and play with his buddies. We are trying desperately to put some order back into his life. While only being two, he has had to learn to eat, sleep, bathe, and play in an entirely new environment 4 days per week. He has only been able to sleep in his “big boy bed” three nights per week. It is tough to hear him begin calling for mommy as soon as he and I turn into the driveway at home. He readily bursts through the door with the “mommy where are you?” that we were so used to hearing a month ago. He then searches high and low through an eerily empty house for the other half of his parents to only find me over and over again with a perplexing look upon his face.By this time he is ready for bed, and we go through the bedtime rituals. Michael has had to walk past his much loved and worn toys, left dormant for weeks on end and go directly to bed. He like many of us has lost all control of his life. His schedule and routine have fallen victim to the collateral damage of “Katie’s Story.” Until recently Michael had been doing well with his potty training. He was not perfect but he was making some effort, which is all we asked. Currently he has realized that all he has control of is when and where he uses the bathroom. He has reverted entirely back to diapers. Upon a bit of inquiry with those who know more child psychology that I, we have discovered that this is a normal coping mechanism to the second hand stress that he is enduring. Hopefully this will be the biggest concern that we will have with him during this time. Beth and I love him dearly; he is my buddy, my first born, my son. He is tough and resilient, I know that he will bounce right back when little sister comes home. Speaking of little sister: She was exceptionally happy and active. Tonight was my night for diaper duty. When I picked her up, I instantly noticed that she was soaking wet, so I jumped on my fatherly duties and made her dry all the way around, diaper, clothes, bed linens, the works! In nearly a repeat of the previous night, Katie began to exhibit those curious expressions and then it happened….yep, another eruption! And into another diaper less than 2 minutes old. You gotta love it! Once I had this cleaned up, it was time for the nightly nurse assessment which Katie passed with flying colors. I was happy to see that Katie was exhibiting the classic signs of a hungry baby. She was a bit whiney, and was sucking her fists and blanket. When the Nurse handed me the bottle, Beth and I said our little “let it click” prayer.Katie sailed right onto that bottle and rapidly downed 9 of the 10ccs that the nurse had put in the bottle. Upon adding another 20 to said bottle, Katie again began to suckle, albeit with a bit less enthusiasm. All total over the next several minutes I was able to coax another 13ccs into her. This made her grand total for this feeding at 22ccs. This is her highest amount yet! Oh Lord let this have been the click. The rest of her feeding took place through the naso-gastric tube after she rejected the bottle. Beth and I were still proud of our baby. The rest of our visit this evening was spent adoring our littlest one, and beaming in our delight over her and our son. We are so fortunate to have our little family and can’t wait until Michaels little lips can gently and innocently touch Katie’s forehead for the first time.We thank the Lord daily for Katie’s tenaciously holding onto good ground, and even more for her little progresses, for He is worthy to be praised. Revelation 4:11 reminds us “Thou art worthy, O Lord, to receive glory and honour and power: for thou hast created all things, and for thy pleasure they are and were created.” We have the option and freedom to serve the Lord or not. He created us to have free will. Had he not done so, we would be no better than mindless robots. What glory would that provide our King? We thank You Lord for Your continued blessings, and for good choices!

Day 26--May 5, 2009

2009-05-18T09:48:00.000-04:00

The veil of my despair was parted today, if only ever so slightly. After a somewhat restful night, full of dreams of adventure hunting wild turkeys, I rose early showered and prepared to meet another day. Once we had spent our morning hours with Michael, Beth and I sped off to Duke. By the way, in the coming days I plan to attempt to calculate all the miles we have driven to and from the Parker Reese house to Duke and back, plus each of my trips home to work and let Michael nave some time at daycare. In retrospect, I am not sure if that would be a good idea. I’ll have to ponder that.Anyway, Katie was doing well this morning. As I neared her crib I was met by big bright eyes which seemed to be purposefully examining anything within eyesight. It was all I could to not just scoop her up and squeeze her! Beth may have fought me for the first smooch though. She looks so perfect. We were quick to inquire about her bottle feedings to only discover that she had slipped back into her dislike of the nipple. Even after much coaxing she had only eaten 3 or 4ccs from anyone. Even when I tried again at the 1:00 feeding she fought the bottle and readily latched to the pacifier. Such frustration! We again had a brief meeting with the Nurse Practitioner and nurse who were caring for her today. They reassured us as all of these kind folks do, that this is normal for CDH babies, and that one day it will just “Click”, and she will drain the bottles. This has been our desire and prayer of late, “Lord just let it click.”This was all forgotten soon after Beth picked up Katie for her morning snuggle. Katie’s face began to contort into all types of interesting expressions, and then with the unmistakable sound of diaper vibration it happened…….Mount Saint Katie erupted! It was quite humorous to see the look on Beth’s face as we realized that the diaper Katie was wearing was not sufficient to hold all that had been deposited, and it had filled the hospital blanket that she was swaddled in. Not only that, but as that wonderful swaddling cloth is not water proof, the proof was also left on Beth’s Knee. The instantly recognizable pungent aroma sent me into a giggle that only a parent who has had it happen to them can understand. My guffaw was met with an understanding smile from Beth, and we set about the business at hand. This was a tag team effort!After much washing, and who knows how many baby wipes, we were nearly done. Once the new diaper had almost been fastened, those faces began to appear again. “Uh Oh” Beth muttered, and no sooner than she had said that, Katie erupted again, this time from the other end. With out hesitation Beth rolled her onto her side. Then the unexpected; yet a third eruption into that brand new diaper. It may sound strange to those of you reading this, but to us this was almost as good as being at home. For briefly we were consumed with the somewhat normal care of our baby. Anyone who has had the privilege of being a parent can relate to that. These are normal parenting issues that, while messy, brought a comforting familiarity to Beth and I. Much to Katie’s displeasure, as well as many onlookers in the room, Beth and I had a good chuckle while changing the babies clothes and bed linens. These are the same untidy functions that we will face frequently at home. It was a welcome distraction, and strangely enough, the highlight of my day. Nanna Joan had earlier given Katie the nickname “Katie Poo,” she didn’t know how accurate that name might be.Another ray of hope was the mention of us receiving a discharge packet. Beth and I were a bit shocked to even hear the “D” word. The Nurse told us that it was just a packet that we were to read at our “leisure” (do they still make that?), so that when IT clicked we would be ready to go. Alas that was the last we heard of any “D” word packet. Of course we never saw one either.Today was also a day that the grandparents and great grandparents got in cahoots and carpooled ever soooooooooooo slowly to the hospital to see Katie. Each one in turn was able to come back and visit and spend a little time holding her. I took lots of pictures which I will have to share at a later time, as I have forgotten the USB cable for the camera and left it at Parker’s house. I will see if I can remember to add them at a later date.I was late getting back to Coats tonight with Michael due to the storms raging across the state. I was about an hour and a half late getting my boy to bed this evening. As we have come to understand, summer storms can be sudden, frequent and violent. The same holds true with our lives. All too suddenly a storm can overtake us without warning, dropping immeasurable amounts of rain onto our otherwise sunny days. The Lord and creator of all things is still in control. Psalms 107:29 reads “He maketh the storm a calm, so that the waves thereof are still.” Again in Mark chapter 4 we read where He calmed another storm at the behest of his disciples, verse 39 and 40 read, “And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm. And he said unto them, Why are ye so fearful? how is it that ye have no faith?” Upon the realization that this was God’s lesson for me today I also prayed “Refresh my faith anew oh Lord. I know that you control the storms in my life.”I am now ready to peacefully put my head to pillow, and continue my dreams afield. Thank you Lord!

Day 25--May 4, 2009

2009-05-18T09:42:00.003-04:00

If it is possible for one’s heart to be cleaved into multiple pieces and scattered abroad, then I am living proof of that today. This has been one of the hardest days for me since learning of Katie’s condition. For whatever reason, my heart was not within me today. A portion of it was left at Judy’s learning center on the way to work, another portion was lying in a crib in room 5611 of Duke University Medical Center. The largest portion by far was occupying a space somewhere in the Parker Reese House, Duke Hospital or somewhere in between.For some reason today I have felt an overwhelming desire to have my family together. I went to work, but had no desire to be there. I went about the tasks of the day rather mechanically. It is unlike me to walk and look at the floor, but I have become quite familiar with the tiles of the halls at Triton, as well as the carpet of the rapid transit tunnel leading to Duke under Erwin Street in Durham. Our family Chevy trailblazer seems to know the miles between home and my destinations better than I, and it seems to find its way as if on autopilot.Most smiles today were for someone else’s benefit with little desire from within. These statements are not meant for sympathy, but rather conveyance of thought and feelings.I have no individual source for the overpowering loneliness that I felt today, other than the sense of having a fragmented family.Once I had collected Michael from day care and rendezvoused with Beth’s Grandparents for a care package of home made chicken and pastry with all the trimmings, the boy and I headed back North. A little over 90 minutes later we arrived to the smiles and hugs of my lovely wife. I felt as complete as I could. Soon our little unit will be whole.After enjoying the labors of MaMa McDuffie, Beth and I prepared our oldest for bed, and off we went to see Katie. She was wide awake and rather fun to play with. We got there just in time to watch her have her nebulizer treatment, and participate in her evening assessment. Diaper changes and all! She gained a miniscule amount today, but not much. She had done decent with her bottle feedings, haven eaten 21cc’s, 15cc’s, and then digressing back down to 5cc’s.Another bit of news was that her blood pressure is beginning to get borderline high, so she may have to be put on blood pressure medication as well. Her MRI indicated that she had a small amount of fluid on the left side of her brain near her temple, but that it was of little medical concern. Otherwise her brain looks normal.We are just kind of treading water right now. It seems for the past several days we have been content to not slip backwards. At present there is no end in sight. I spent as much time as was practical holding my darling girl, with my wife by my side. I am looking forward to having a “young’un” on both knees. I have plenty of lap, hugs, and kisses for both of them.Although I felt alone today, and missed my family terribly, the thought was never far away that “Yeah though I walk through the valley of death, I will fear no evil; for Thou art with me, Thy rod and Thy staff they comfort me.” As Christians we are not promised a life of ease, or free from care. On the contrary, we are instructed to “take up our crosses and follow Him.” What is my cross? What is yours? I suspect that they are all different. However I know that “Surely goodness and mercy shall follow me all the days of my life, and that I will dwell in the house of the Lord forever!”Thank you Lord!

Day 24--May 3, 2009

2009-05-18T09:40:00.000-04:00

As I have come to almost expect, just like clockwork we had a pretty good day. It seems that this roller coaster analogy may be more accurate than I had originally thought. Yesterday was pretty rough, especially for Beth. Today however was entirely opposite. When we arrived at Katie’s bedside this morning we were very pleased to discover that she had eaten 20cc’s of milk from a bottle for the therapist! This almost single handedly quadrupled what she had done for us previously. Only once or twice has she taken more than 5 and the most had been 10. We have now become cautiously optimistic and managed to quell the desire to once again run around the room. It seems that with every forward step there is inevitably that pause or stumble to come. So we very matter of factly said “Oh…..good job little girl,” gave her a couple of smooches for a reward and sat back waiting for the next time.Shortly after we arrived, the Doctor for the day came in, it is a rarity to see the same doctor more than two or three days in a row. It is even more rare to see the same nurse…..ever. This is a source of consternation for me, as I would like to be able to learn these people’s names, and feel comfortable around them.Anyway, when the Nurse Practitioner completed updating the good Doctor on Katie, her condition, subsequent treatments and drugs, Beth and I were asked if we had any questions. Being one to not hide my light under a “bushel,” I spoke right up, a teacher ain’t worth their salt if they don’ t believe in class participation.I questioned the practice of feeding her every three hours, when the pump is set to take an hour to deposit the milk into her stomach. That leaves only a two hour window for the milk to be digested before, with or without a desire from Katie, another quantity is added. Beth and I were concerned that she was just not getting hungry, and therefore not interested in suckling. At home you feed a baby when it cries and shows signs of hunger not by a clock. We asked if the feeding could be moved to four hour increments at least to see if she woulf show any more interest in the bottle.Shock, astound, and amaze!!! The doctor looked at us for a minute, and with a thoughtful expression said…. “Well, we’ve done other things like this before. It might work. Let’s try it.” Beth and I kind of stared at each other for a minute. Why did we wait so long to ask that question? Would it have worked with another anonymous doctor? Who knows?The decision was also made to only attempt to nipple feed every other feeding time, in order to not make her absolutely hate a bottle, which we have learned is entirely possible. So when the appropriate time came around this afternoon I made my way back over to the hospital. Beth stayed behind to watch Michael so I could get in one more visit in before coming home for the night. Once there I was able to hold her for a while and sing to her in order to help calm her down and slow her respiration. Once the nurse had prepared her evening milk and formula slurry, I tried my hand for the first time with Katie and a bottle.Over a 20 minute or so period I was able to coax her into drinking 16cc’s. Once I was done, I felt like I had worked all day long digging ditches. The amount emotional and spiritual energy expended in this effort is immense. You almost have to “will” her to eat. She will pull for a couple of little swallows and then force it out of her mouth with her tongue. After 30 seconds or so we try again with about the same results. Each time she latches you pray “dear Lord this one be the one that clicks!” The nurses tell us that sometimes these CDH babies just wake up one morning and eat like there’s no tomorrow.We are also aware that some CDH babies never eat from a bottle and come home with the naso-gastric tube. We are hoping to avoid that.We are pleased at the small amount of progress that was made today, and exceptionally thankful that there were no setbacks. The medicine they were giving Katie for the Trush was not working, so they switched after four days. Hopefully this will do the trick and swallowing will not be so painful for her. We do not know what tomorrow holds, but I know one who does.Matthew 6:34 tells us “Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.”As I left her again this evening, I was peaceful in the knowledge that she was in good hands….His hands.h

Day 23--May 2, 2009

2009-05-18T09:37:00.001-04:00

I wish that I could report some astounding achievement for today, but alas, we have gained no ground. Katie still will not eat more than 4-5 cc’s of milk. Then it’s lights out. She just goes limp and into a perpetual state of hibernation it would seem. I even tried to use a cold baby wipe to lightly brush across her brow in order to help arouse her. That did not even work. For the past several days she has also been treated for Thrush. At one point her tongue was almost solid white. After changing her medications she does seem to be making strides I that regard. We contribute some of her reluctance to eat to the Thrush. It must be uncomfortable to swallow in that condition. We will continue to wait for slight improvements.She has had several tests done today, including an MRI, and a pulmonary function test. The latter of which indicated that she required treatment by nebulizer twice a day. Katie has still not made any gains in weight either. The nutritionists say that she should be gaining about an ounce each day. At three weeks old she is still half a pound lighter than when she was born. Her rapid respiration just uses more calories than she can consume. To combat this issue, the nutritionist had ordered that ½ teaspoon of high calorie formula be added to her milk. This is supposed to help her gain weight. Who would have ever thought that a Cole would be trying to GAIN weight!?Emotionally it has been another hard day around here. It seems that the roller coaster of highs and lows is getting faster and the dips are getting deeper. Michael is a good litmus test of this. He can pick up on our dismay and reflect it as well. Today he has been hard to handle. He has been quite disrespectful and defiant. This is terribly uncharacteristic of him. No amount of time outs or other disciplinary action has seemed to stem the tide of his belligerence. We understand that this is a part of his coping mechanism and age, but it can be hard to endure.Our undying and overwhelming desire to go home is forever on our minds. Rather than continue to temporarily pitty our situation we must focus again on the good. Inspiration comes to us from the strangest places. These little snippets of focus must only come from God. You see, there is one of those little daily devotional calendars in our bedroom here at Parker’s house. Like many of these little calendars it is often neglected and not turned. Truth be told, I am unsure if it was ever on the right day. However this morning as I was passing by it atop the chest of drawers, I paused long enough to pick it up and read what had been staring at me for who knows how long.Here is what I learned:It is an undeniable fact that usually those who have suffered are best able to comfort others who are passing through suffering. They know what it is to suffer, and they understand more than others what a suffering person is experiencing—physically, emotionally, and spiritually. Our attitude toward suffering should not be “Grit your teeth and bear it,” hoping it will pass as quickly as possible. Rather, our goal should be to learn all we can from what we are called to endure, so that we in turn can “comfort each other and edify one another” (1 Thessalonians 5:11).We are ordering our steps per the Lord’s direction. His will does not take us where His grace will not protect us.

Day 22--May 1, 2009

2009-05-17T22:43:00.002-04:00

Priority one to mention today is a huge thank you to the other school nurses from the Harnett County School system. Beth made the journey today to visit some of her coworkers after a meeting they had in Cary. She came back a renewed person. She has had a bounce in her step and a glisten in her eye ever since. I wish I had taken count of the number of times this evening that I have heard her say how much she appreciated seeing “her nurses” today.This reprieve from the monotony of a hospital brought a ray of sunshine back into her life, if only briefly. Beth has been her “old” self tonight, laughing and joking. It did my heart good to see my wife again. For that, I thank you unsung heroines of the school system. Thank you.Also, “Katie’s Story” has drawn untold numbers of people together. I have made new friends in places that I never would have expected. It is amazing how the bond of compassion can draw would-be strangers together with a unified concern. Just today, as I walked into the County Office in order to add Katie to my insurance, I was pleased to find that many of the fine people who work there have been following Katie’s progress. It was mildly amusing though to be introduced as Andy Cole only to have a curious look and the slightly tilted head shortly followed by “You know, Katie’s dad!” and the resulting ohhhhh! I have worked for the Harnett County School system for eleven years and this was my first visit to this building, yet I was treated like an old friend, thank you ladies and gentlemen for your kind words of encouragement.As I have begun returning home on Mondays, Wednesdays, and Fridays, I have been able to check the mail. I can’t begin to convey to you the numbers of letters, cards, and packages that we have received. Each one sealed with love. These letters and cards have become a favorite pastime right along with reading your e-mails to Beth and I. We never really knew how many people we knew, or the caring of so many strangers.Proverbs 18:24 tells us: “A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother.” We have felt the “friendly love” shown to our family by each of you, and also the love of the Friend that Sticketh Closer than a brother. You see we ARE the body of Christ. No other time in my life have I felt the awesome power of His love so marvelously displayed on so many fronts. Today Beth and Joan were able to spend a considerable amount of time with baby Katie. Beth has also been encouraged by the fact that Katie has made several small attempts to suckle from a bottle. The most she has eaten in this fashion has been about 10cc’s, most of the time it is only 4 or 5cc’s. When she is eating 68cc’s this amount is almost insignificant in volume, however the step toward recovery and a trip home is huge in our estimation.Beth was also pleased to report that Katie has not received any medication to assist her withdrawal symptoms in nearly two days. We think that she is mostly through this very difficult time of detoxification.Tonight when I finally got back to the TCN, I could hear the sweet sounds of her cries as the doors opened. I knew that pure soft voice had to be from my darling girl. The TCN nurses were quite impressed that dad had learned to pick his baby's disgruntled complaints out of the chorus of crying babes. As I hurriedly went through the obligatory scrub and rinse, scrub and rinse, attempting to dry my forearms and hands with the most pitiful paper towels in creation, and then the donning of that glorious own, I enjoyed the tune my girl was serenading.To many the muffled cry of a baby may be an irritant, but after what we have been through, it was a glorious sound to me. As I studied her vital signs monitor, I was glad to see that her blood oxygen saturation level never dropped below 96, even with her whaling. Once I had “degermified” myself to the satisfaction of the nurses there, Beth and I made our way the Katie’s Crib side. This spunky little girl had once again decided to remove her naso-gastric tube. It was clutched tightly in her right hand and gently wound around two or three fingers. Her nurse seemed to not be terribly concerned as Katie has done this several time. The nurse said she would put another one in within a few minutes. It was then that Beth and I realized that we were looking at our child for the first time in 22 days without some foreign piece of plastic invading an orifice on her face. We quickly seized the opportunity to remove the tape from her cheek and snap a few photographs of Katie all natural. She was not real happy with us, and the photograph proves it, but if only briefly we were able to soak in the radiance of Katie’s innocent beauty unhindered by medical hardware. In short order the Nurse reinserted another offending tube, and securely taped in down again. She had her periodic assessment, diaper change, and a new set of clothes. From then on Beth and I took turns holding Katie, in a room full of light, sound, and movement. However, as we caressed her tiny head, and lovingly inspected each digit of her little hands no longer drawn in pain, it was easy to forget where we were, and just enjoy the fleeting moments with our daughter.

Day 21--April 30, 2009

2009-05-17T22:41:00.000-04:00

Once again after an hour and a half of singing, “Old MacDonald,” “ABC’s,” “Go tell Aunt Rhodie,” “Froggy went a courtin’,” “There’s a hole in the bottom of the sea,” and who knows how many other songs over and over again, Michael and I have finally arrived safely at home in Coats. He was very ready to get into bed and quickly fell off to peaceful sleep as only a child can do.Today’s report is a bit anti-climactic. As it were, Beth did not have a good night. She has felt pretty much under the weather since around midnight last night. She has been achy, with headaches, and had several sets of chills run through her. She feared that she might have a low grade fever. Upon acquiring a thermometer, however it was discovered that she did not have a fever. She has had another bout of swelling in her feet and legs, no doubt from the relentless sitting by Katie’s Crib. This fluid shift is apparently common after childbirth, but normally does not last this long. The nurses at Duke tell me that all of this added stress has more than likely contributed to her continued physical weakness.Beth chose to not go to the hospital today, in order to convalesce a bit, and to prevent carrying some contagion to within the nurseries at Duke, not just for our baby, but all the others as well. I can tell you that this decision was not made easily, but in true loving, motherly fashion. Beth only wants the best for our children, even if it breaks her heart.Her absence from Katie today coupled with the reports of the baby’s reluctance to eat, has begun to re-grow a state of melancholy for Beth. It was easy to understand we couldn’t have her when she was hooked to ventilators, PICC line, IV’s, etc. Now since she looks and acts like a normal baby, Beth wants her HOME! I understand that as well, however I guess as a male, I am void of the hormones and the “umbilical” connection to our child that Beth has and continues to experience. As husband and wife, Beth and I are very close, as many are. When she hurts I hurt. Truly today, I have felt that Beth needed more prayer than Katie.On a lighter note, one of my dearest friends and former colleague turned Pastor, Allen West, showed up today with his oldest son Ben. Our two boys spent the morning playing along the dusty driveway of Parker’s House, and Allen and I also took them to the pond for a bit of fishing. As the attention span of toddlers and preschoolers is about as long as my finger, it was not long before all of the fishing was done by only Allen and myself. The boys were content to wrestle and play on the golf cart. Michael threw Nana’s grill scraper out of the golf cart and into the pond (ooops I forgot to tell you that before I left Joan.) We then decided we had fished enough and called it a morning.Shortly after eating lunch Allen and Ben said their fair wells, and I put Michael down for his nap, then it was off to see my Katie.She was napping peacefully when I arrived. The nurse for today got her out of her crib and gently laid her in my arms. After commenting on how tiny yet comfortable Katie looked being held in my big rough hands, the nurse went about her chores. The next several hours went by so quickly it was shocking. Katie rested quietly in my lap, and never once exhibited any signs of withdrawal, she is so beautiful! Like her mother.As you may have noticed with the opening of this update I love to sing to my children. I am no good at it, but I try to “make a joyful noise.” Michael enjoys it, and I think Katie does too! Several times during this sweet period of connection between Katie and I, she gave me some big gummy grins. I know, I know it was probably gas, but don’t spoil my misty moments ok! Mostly she slept, and at least once so did I. I woke my self up snoring, and to the muffled giggles of the TCN nurses. I didn’t skip a beat, and picked right back up where I thought I had left off on the last song.Many times during this visit I told Katie how beautiful she was, and just how many people loved her. We also had a serious discussion about her putting some effort into this suckling business. She must have been able to detect the subtle change in the tone of my voice, as her bright eyes seem to lock with mine in an understanding fashion.Just as with every other time I am forced to depart, I whispered a prayer for my darling girl. This simple, yet heart felt prayer always brings tears to my eyes as I truly feel that it is being heard by the Master.Kind and most Gracious Heavenly Father, I come to You as humbly as I know how to give You thanks and glory and honor for all that You have done for my family. Thank You so much for intrusting us with this precious angel! We know that she is Yours to freely give and to take. What an honor it has been to have been chosen by You Almighty God to have been given her charge. We thank You Lord, for the healing touch that you have already performed, and ask that if it be Your will, that the windows of Heaven should open wide and allow the miracle of healing to continue to flow, not just for our darling Katie but for all of the deserving souls in need here and elsewhere. Thank you Lord for giving the Doctors, Nurses, Technicians, Therapists and all the other health care professional here, the ability to help facilitate your gift of healing. May their work, be fast and accurate, may their decisions be guided by your spirit. Grant all of the families with loved ones here the peace of spirit that only You can provide. As I leave my precious baby girl I entrust her body and soul to You Oh Lord, enshroud her with Love and peace as only You can supply. Watch over her, and protect her, until I can return. Thank you Lord!Amen

Day 20--April 29

2009-05-17T22:30:00.003-04:00

Once my watch was over today at the school house, I hurriedly went to collect Michael so we could begin the hour and a half drive back to our home away from home at Parker’s House in Hillsborough. Once we arrived we had a wonderful supper prepared by Nana Joan (who knew that retirement would inspire such things?), and let momma spend some time with her first born.Shortly after this reunion, Beth and I struck out for the Hospital. After all it had been a day since I had seen little Katie. During the 25 or so minute ride, Beth and I discussed her progress during the day. Mom and dad had come and spent quite a while with Katie today and provided her with some much needed rock and snuggle time, but little progress had been made toward her being able to eat orally. This has become a source of great consternation for Beth. As we journeyed up the now dimly lit Durham Freeway, Beth admitted that she seemed to have “hit a wall”, and had begun to feel a bit discouraged. We have spent so much energy remaining positive, and cheerful through this whole ordeal, that apparently some of this has begun to take its eventual toll. As the miles rolled by, we again counted our blessings and all of the achievements that Katie has already made. We had one of the many pep talks that we routinely give ourselves, and thanked the Lord again for his many blessings. We, and I mean this in every since of the word, WE once again helped sure up each other’s resolve, and together we refocused on the task at hand. Trying to rein in a hopeful heart can sometimes be difficult. We would like nothing more than to let this all pass so we can go home.We again realized, especially after talking to one of my coworkers today, and seeing so many of the premature babies, that we were much closer to going home than many of these children. As I also mentioned in another e-mail, and to another coworker as well the wonderful ladies at the United Hair Salon today (Joan, Beth, and Michael get their ears lowered there. I go to a manly man barber……sorry ladies), “we are not out of the woods yet, but we are peering through the limbs.” I then realized, as all hunters know, the edges of a wood line are often the most grown up, because this is where the most sunlight can reach. This is where the briars, brambles, and poison grows. This is often the hardest places to get through. I was convinced that we had gotten into those “briars” and were having to pick our way through to open ground. Then we got to the hospital……We approached the window, and proudly announce “mom and dad to see baby Cole in room seven.” We were promptly told, “I am sorry your daughter is not here.” “WHAT!!?? What do you mean she is not here? Where is she?” The reply through a toothy grin was “she’s been transferred.” Again,.. “WHAT!!?? What do you mean she’s been transferred? Where is she?” We were elated to find that after TWENTY days she has finally been transferred to the “Transitional Care Nursery.” This is like having one foot in the door, just enough to keep it from closing! Again, when the sky was beginning to darken the Lord heard our prayers and opened the sky and poured out his blessings on us. That wall that Beth had mentioned was demolished and spread to the four winds. This was like Christmas when we were kids. One of the things that we have been waiting for, for so long has come to fruition. This was something that we had only dared whisper mostly among ourselves as we were convinced that it was still weeks away! Thank you Lord!Once we were given access to this new facility we discovered that our baby was on the floor! We were asked some time ago to bring a “bouncy seat” which Granny and Papa Cole were kind enough to dig out of the attic at our home and bring up on one of their many visits. Katie was snoozing soundly in this new piece of furniture.We were also greeted by the wonderful news that she had not been given any additional doses of medication to fight withdrawal symptoms since early this morning. Perhaps Katie has finally broken this strangle hold of discomfort. Tonight she was as limp as a rag doll. Her arms were by her side, and not in that “boxer’s” pose. Her hands were not balled into fists and her little fingers were easily extended, and her palms were peacefully lying on her knees. We had not yet seen her in this capacity. It was good for our hearts! We have become quite efficient at retaining our composure, but it was hard for me to see through the “mist” of delight!Beth was allowed to give her a bath, which Katie Did Not Like! Beth loved it though, and this also seemed to sweep any remaining “Wall” dust under the rug!Beth also attempted to get her to suckle a bottle for several minutes, but Katie would have none of it. It is funny how God has once again has shown us how many blessings he has given us. As mentioned earlier, this was the one thing that was causing the clouds of despair to form over Beth, however the fact that Katie was too sleepy to eat seemed relatively insignificant compared to all of the wonderful gifts from God that we received on so short a time.Thank you Lord, for again teaching us patience and humility!

Day 19--April 28,2009

2009-05-17T22:20:00.002-04:00

Today started much like so many before it, at least in Hillsborough. We were awakened this morning by the wonderful pitter patter of little feet, and the boisterous voice of a 2 year old bursting through the bedroom door yelling at the top of his lungs “Momma, Daddy, Momma, Daddy, giyet UP!” Who needs an alarm clock when we have Michael?While this can be mildly annoying, I can now be exceptionally thankful that he has been a very healthy boy. Other than routine checkups he has only been to the Doctor once for being sick, and even then they told us it was nothing. It is easy to sit back and enjoy blessings that we didn’t even know we had, without giving thanks. “Katie’s Story” has keenly tuned our senses, and taught us to pick up on the little things that so often have been overlooked. Ephesians 5:20 reminds us to “Give thanks always for all things unto God and the Father in the name of our Lord Jesus Christ;”I compose this update from the empty comfort of my own home. The current schedule that we have created, requires me to leave Parker’s House in Hillsborough about 6:30pm so that I can get Michael into his “big boy” bed by bedtime. He and I will then get up in the morning for a somewhat normal day. I will drop him off at Judy’s Learning Center, where he attends daycare, and I will then head on to work. Once school is out tomorrow we will head north again to our home away from home and the rest of our little family, until Thursday night when we do it again.Beth keeps a constant vigil by Katie’s side, and has been very instrumental in her continued recovery. She has no further plans to return without our little girl. Beth’s persistence, that only a mother can have, is what broke Katie from her aversion to the pacifier. Now should this little, and seemingly insignificant piece of hardware leave Katie’s mouth, it is a virtual catastrophe!Today with Beth’s persistence we again met a small milestone. Katie drank 12 cc’s of milk from a conventional baby bottle! This is only about a teaspoon or so (I think), but it is a huge step toward bringing her home. This small amount of sustenance took her twenty minutes to eat. It also greatly fatigued her as the suck and swallow portion of eating requires that she hold her breath. Since she obviously has a depleted lung capacity this causes desaturation of her blood oxygen. She will have to learn slowly to get a rhythm and stick with it. We are so proud, and Beth was just beaming! I missed the whole thing! So no pictures of this event can be posted for your viewing pleasure. I had taken time, which I do not regret by the way, to visit with our wonderful Pastor, Reverend Randy Beasly, in the waiting room.On a bit sadder note, Katie is still fighting some withdrawal symptoms, and it has been determined that the Versed that she has been having administered to her is just not working in her case. She has now been switched to Ativan and phenalbarbatol. The later of which will also require stepping down slowly, and has its’ own set of withdrawal symptoms. We have been told however, that we can at least bring her home and continue that regimen here if need be.She has been able to maintain her blood oxygen saturation at an acceptable level for two days now on her own, and breathing room air! While we are still in the Intensive Care nursery, Beth and I are hoping that she will soon be transferred to the “transitional care nursery”. We are still in the woods, but we are optimistically peering through the branches!I look forward to that soon coming day when I might hear two sets of pitter pattering feet and the harmonious chorus of “Mommy, Daddy, Mommy Daddy,…get up!”

Day 18--April 27,2009

2009-05-17T22:18:00.002-04:00

I donned my wrist watch for the first time today in 18 days. The thing is so aggravating to take on and off for all of those hand to elbow washings that I had chosen to just put the thing away until I needed it again. You see, time here has also been relatively insignificant. There are no windows in the little ICN room where Katie is, and hence no way to tell night from day. The rapid transit tunnel from the Hospital to the parking deck is under ground, so it is entirely possible to enter and exit the hospital without seeing the light of day once you enter the parking deck. The only schedule that we have been trying to keep is our time with Michael in the morning and the evening during the shift changes at the hospital.Ecclesiastes 3:1 reminds us: To every thing there is a season, and a time to every purpose under the heaven:For Beth and I, time here on earth has become a dazed and confused compilation of events rather than days. They seem to run together. Honestly had it not been for these never ending e-mails to look back upon, we may have never really been able to sort everything out. However we have always known that we are on the Lords time. We have faith that just as our yearly seasons come and go, so shall this “season” of our lives. Soon the cold hard ground of this great event will begin to thaw, and bring forth the fruits of normal parenthood. We know that this time has been and will be of some benefit to someone somewhere. We are thankful for this “time.”As a school teacher, as most of you reading this will understand, my normal day is rigidly regulated by a cursed clock and associated bells. I needed my watch today because I returned to work. Time is of the utmost importance in a classroom. This was a welcome distraction from “living” in a hospital. After so many days here, our little caravan decided we needed a day to go home and re-fit, re-supply, re-group, re-pack, and re-turn. I also took Michael back to day care in order for him to get a little socialization with children of his own age.At present the plan is for me to go back to work on Mondays, Wednesdays, and Fridays. I also plan to take Michael with me and have him a daycare in order to help begin putting some familiar structure back into his life. He has been such a trooper, and had really done well during this family crisis. Beth and Joan plan to remain at Parker’s house for the foreseeable future, to be near Katie. I will be there on the off days and weekends, as will Michael.I really enjoyed my return to work today! Soooooooo many of my coworkers came up with tearful eyes and loving hugs! It is great to work in such a place where such freedom of emotion can be exhibited. Those of you new to our faculty may not fully understand just how tight knit we are. If you hang around a while though, you will! I look forward to visiting with those of you that I did not get to see today, perhaps later this week!Katie has had a spectacular day. She has had her nasal canula removed and is breathing room air. Her oxygen saturation levels are running 97% + most of the time. Her PICC line was removed and she no longer has any “internal” plumbing except for the naso-gastric tube. She still sports those ever so important electrodes for measuring various bodily functions, but they are not intrusive.In our absence for most of the day, my mom and dad, John and Irene, came and spoiled the mess out of Katie. All she wants to do now is to be held, rocked, and sung to. Wait a minute…..she may have been spoiling them.When Beth and I got back this afternoon Katie was just about to get her periodic assessment by the nurse. She is showing less and less signs of the withdrawal symptoms, and more and more signs of hunger. She has gained a little weight and now weighs 7 lbs 8 ounces. Only 8 more ounces and we’ll be back to birth weight.Katie still is not cooperating with the oral feedings. This is the last great hurdle that we expect she will have to clear before being moved out of intensive care and into a transitional unit. Since she is a Cole, after all, eating should come quite natural. If only Michael could get into the ICN he could surely show her how to get some grubbing done! We are confident that since the Lord has handled everything else, He too will handle this in His own time.Another verse that I enjoy concerning time is Psalm 62:8. “Trust in him at all times; ye people, pour out your heart before him: God is a refuge for us.” We have done just that. When I say “we,” I am including you. So many prayers from so many prayer groups, congregations, and individuals that have been poured out must have had Heaven reverberating like thunder. They have been and continue to be heard by the Master, the source of our refuge. Thank you, and keep them coming.

Day 17--April 26, 2009

2009-05-17T22:05:00.003-04:00

Exodus 20:8 tells us “Remember the Sabbath day, to keep it Holy.” For many ,this consists of the obligatory trip to Sunday School and/or Church. Beth and I really enjoy attending the services at our home Church, Lee’s Grove PFWB, in Dunn. We love the church family there and feel right at home.I relate missing church to kind of like skipping class when I was in College. That first time was the hardest. The guilt set in and you kind of “skulk” around hoping no one see you. Each consecutive time after that gets easier and easier. It is easy to wake up on a cold and rainy Sunday morning and look out the window, clutch your arms across your chest, and give a little shiver and lightly utter “buurrrrrrrr”. Then crawl back into the comfort of that warm bed. Is it just me, or does the bed feel extra especially good on Sunday morning?Now it seems that when we wake up and look out and the sun is shining, it is warm, and dry that all kinds of chores or extracurricular activities provide encouragement to not go to church. I like to fish. For some it may be Golf. It seems that there is always something to keep us away from the Lord’s house if we will let it. For Beth and I, we choose to attend services and be active at church. For two weeks now Beth and I have been unable to attend our little country church to hear God’s words, but I believe that we have been hearing them more clearly at out daughter’s bedside than anywhere else. As a vocational teacher (CTE for those of you who know what the acronym stands for) I believe in theoretical instruction followed by plenty of practical hands on experiences. Put what you know to work! Build something. Repair something.I feel that all of my life, the lessons that I have learned while “warming a pew” have mostly been theoretical. Beth and I truly believe that this experience has allowed us to put some of these life lessons into practical “hands-on” experiences. While we sit and watch little Katie, and her marvelous transformation from barely holding on, to achieving was beyond the curve of normal CDH babies, we have truly felt the presence of the Lord.We have daily prayer with her, and it does us more good than her I think. We also pray with other families here who are suffering. We now feel an extraordinary desire to provide some sort of service in the future to those in our situation. We have been in contact with the wonderful people at the Parker Reese Foundation and have offered our services as “sounding boards”, “listeners”, “dry shoulders”, or service in any other capacity to future Duke or Chapel Hill CDH families.Enough rambling! You want to hear about Katie. She has had a very good day. She did have some reflux problems during the night last night, but they were minor. She has been put on a regimen of reflux medication, and has had no more incidents thus far. The Nurses are not ruling out that these few and mild episodes of reflux are not associated with withdrawal symptoms. Hopefully as she steadily improves each day with those withdrawal symptoms, she will have no more issues like this. We have been warned that nearly 100% of CDH babies have reflux because of a weakened diaphragm, and the fact that so many tubes have been down their throats. Currently she is taking about 1/3 of the reflux medication that normal CDH babies get. Yet another answered prayer, before it was asked!Katie was never awake any of the time we spent with her today. I think that she is just so exhausted from fighting the withdrawal symptoms that she just needs the rest. Once again we were just content to watch her sleep, and gently caress her head.Katie’s milk volume has been increased to 50 mL’s which for those of us who live in America and love the really easy to understand english measurement system, is about 1 and 2/3 ounces. This is the normal amount that a typical new born is supposed to eat. She is digesting it well and has had no more issues in that regard. All of her medications have been switched to “oral” type medications which are being administered through the naso-gastric tube. Since she is tolerating this exceptionally well also, the medical staff at Duke is considering removing her PICC line tomorrow! This will be the last of her internal tethers to some sort of machine! After that it will just be stick on type electrodes, sensors, and the oxygen nasal canula. We are so happy for her. Beth commented today that now she just looks like a sleeping baby and normal in every capacity. Until now we have realized her need to stay in the Intensive Care Nursery, but as she is gradually loosed from her medical bonds, our desire to scoop her up and take her home gets worse with each passing day. However, as we have already mentioned…..patience, Andy, patience.

Day 16--April 25, 2009

2009-05-17T21:59:00.003-04:00

We were surprised to find that our little Katie had been moved to another room today. She is no longer in the little corner cubical that she has inhabited since her arrival at Duke. We were a bit perplexed by the decision to move her, but quickly found out that the management there likes to “even out rooms” according to condition. There are four infants per little room. In each room there are at least two nurses. We have discovered that in order to help these nurses they try not to have 4 critical, labor intensive patients in one room. Typically each nurse will have one “easy” and one “not so easy” patient.Katie has been upgraded to “easy!” This means that she is no longer the sickest baby in the room! While this brings us great joy for our little one, it saddens us still to know that there are many other families here going through what we have been through, and maybe worse.You see, we have since also learned that the little room we were given use of for the first couple of days is more frequently given to parents of children whose outlook is bleak. They are to be used for the family to grieve in private. Since we turned this little room over we have seen many families use it for that purpose. It makes us shudder to know how close we came to losing our Katie. Hind sight is 20/20 and we are thankful that ignorance is bliss. While you pray for our baby, also remember the other 54 or so that is sharing this facility with Katie.Katie is still having some problems with the withdrawal or “absence” symptoms. They are a bit less each day, but she just can’t seem to shake them. As she is being fed through the naso-gastric tube, one of the things that must be checked before each feeding is tube placement. This is accomplished by the nurse attaching an empty syringe to the tube and gently pushing and pulling air out of the stomach with it while listening with her stethoscope for air bubbles in Katie’s stomach. Once the tube is confirmed as being located in the appropriate place, a small amount of stomach contents is pulled out with the syringe to make sure that all of the milk has moved on through to the small intestine.This morning at the 9:00 am feeding the nurse withdrew 31 of the 34 mL that Katie was fed a 6:00 am. This caused some concern since it had been three hours since her last feeding. Normally the stomach is empty of nearly all milk in this period of time. This “old” milk was discarded and her next feeding went on as scheduled to see if it would happen twice. At the noon feeding when the stomach contents were checked, all was fine, so that feeding began as scheduled as well. About ¾ of the way trough the feeding Katie began to regurgitate the milk. This is the first symptom of reflux that we have had. The decision was made to stop this feed and let her digest what was in her stomach. Between what she did not eat at all and what was lost due to reflux Katie only got about half her lunch. We (Me and the Nurse Practitioner, as Beth was not in the room at the time), thought that it was because we were holding her a bit too horizontal. You have to hold her at about a 30 degree angle when you feed her.On a happier note, Papa Bennie got to hold her for the first time today. She went right to sleep in his arms. The rest of us have to wrestle her to keep her still. She has gotten so feisty that the nurses have had to put socks on her hands to keep her from pulling her naso-gastric tube and nasal canula out. She did about the same with my dad now that I think about it. Perhaps we should enlist their services at night when she comes home,…hmmmmmm?Since today was such a warm and pretty day, we let Michael play outside quite a bit. The kind owner of the farm here, Mr. Snipes, gave us permission to fish in one of his farm ponds. So this afternoon Michael, Papa Bennie, and I went to see if we could help Michael catch his first fish, and we did! He was mildly amused with the bream, but preferred playing with the crickets in the cricket bucket.This wonderful reprieve enabled us for a short time, to focus on a favorite pastime, and God’s wonderful creation. This is such a beautiful place; it is easy to forget that we are in such close proximity to the bustling metropolis. I enjoyed watching Michael as he would repeat over and over “watch the bobber”, and how fearlessly he poked his little hand into that cricket bucket. I realized that if we all take the time to slow down a bit, and take notice, we will be able to readily pick out all the little miracles and Heavenly gifts that are so easily overlooked on a typically hectic day. Our presence here on earth is only temporary. We are not promised the next breath; we need to make the best of every day. We need to love those around us and not be scared to tell them. Give that one last hug, just one more time. Spend time with those you love.

Day 15--April 24, 2009

2009-05-17T21:54:00.004-04:00

Yet another day of progress! Albeit, small progresses, but better than big set backs!This morning as Beth and I entered the small room where Katie “hangs out” we were surprised to see that she was not in her basinet. No she wasn’t on the floor, or abducted by extraterrestrials. The kind folks at Duke had decided that she had graduated to a crib!We call it her “Big Girl Bed!”When I saw Katie the first time here at Duke, she looked so big. This was in part due to all of the hoses, tubing, and wiring that was in the basinet with her. She appeared to take up all available space. As these items have been gradually removed one by one, Beth and I have commented on how small she looks with so much empty bed around her.Now she really looks tiny in that big ol’ crib. She is absolutely beautiful.Of course this apparently incredible shrinking baby is not so much fantasy as fact. When Katie was born she weight 8 pounds .04 ounces. As of the last time she was weighed she only weighed 7 pounds and 4 ounces. This rapid weight loss is due in part to the fact that she hadn’t really eaten until the past few days. The majority of her weight loss is attributed to her highly elevated metabolism as a result of the high amount of morphine she has been on. This is only compounded by the high amount of energy needed to breath at such a high rate of speed. The withdrawal symptoms that she has been fighting for the past couple of days have only made her weight loss worse. As you can see in the photos she looks quite gaunt. We are confident that she will be gaining weight quickly over the coming days and weeks.As far as her withdrawal symptoms are concerned, she seemed to be much better tonight. I think she is exhausted, and she spends most of her time sleeping now. It is difficult to get Katie to wake up for any extended periods of time. Beth and I are content to just watch her sleep for hours on end, as we know that this is the best medicine for her at present.Katie is also tolerating her feedings quite well. She has been assigned to all kinds of therapists. Several of which are speech and feeding therapists. They have been working with Katie to teach her those suck, swallow, and breathe reflexes. Today was the first time she has been allowed to attempt to drink from a bottle nipple. The therapist used a syringe to drop a bit of milk in Katie’s mouth to give her at taste, then she inserted a bottle nipple only into Katie’s mouth like a pacifier. As Katie began to suckle, the therapist gently dropped in a little milk and watched it disappear!SHE DID IT!!! Katie suckled a bottle nipple for a second. It was only 1cc, but she did it. It was very encouraging to watch that jelly bean sized drop of milk disappear from inside the nipple! By this time Katie Darlin’ was exhausted and dropped back of into a deep slumber. We finished her feedings through the naso-gastric tube.The therapist said that this was a great start. SO great in fact that orders have been left for therapists to work with her over the weekend. According to our nurses this is nearly unheard of. Katie’s respirations are still really high, but the doctors think that she has the ability to compensate. With all she has accomplished I don’t doubt that at all!Beth and I were told that we would have to be patient, as this learning curve might be steep. We should prepare ourselves just in case this takes time. I quipped right up, and told the therapist that Beth was a registered nurse, and that I was a school teacher. She didn’t know it yet, but that she had been talking to two very patient people.It was then when I realized God’s message to us today. It only took a minute to find the following scriptures in the book of Romans chapter 5. Especially verses 3 and 4.1:Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: 2: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. 3: And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; 4: And patience, experience; and experience, hope: 5: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.Patience is a hard thing to learn. As educated people it is hard to give up control. However learning to work on God’s time, and not ours will make us all better Christians. I have meant to go back and re-read the first 14 days of Katie’s story, but have not done that yet. However, Beth and I do not recall ever asking God for an instant miracle. Many who pray want what they want right now. We know that we have asked for prayer for healing on behalf of our daughter, but we have not put a time limit on God’s work and blessings. Once we can learn to just say “alright Lord, we’ll be patient” it is much easier to serve him, without feeling left out or slighted.Lord, grant us patience! Please continue to extend what you have already stretched to near the breaking point! We’re waiting for you!Oh by the way: They have increased Katie’s milk volume to 35 mL!On the home front, Katie is not the only trooper. Michael was bitten on the left had by nine, count’em, 9 fire ants while playing in the yard. Do you know that he never shed one tear! He did whine a bit, but we didn’t even know why until WAY after it happened, and we found his toy truck in the mound! He is tough as a lighter knot too! These children come from good stock!

Day 14--April 23, 2009

2009-05-17T21:25:00.004-04:00

Happy two weeks!Those of you that know my momma also know that she is a fabulous cook. I am walking evidence of that. More than anything now she makes cakes, all kinds of cakes. If you can put “cake” in front or behind any other adjective, she can make it,……and it will be good!I say all of that because when Michael turned one week old, momma made him a miniature “Happy One Week!” cake (of course we ate it not Michael, what were you thinking). Our treat today was the fact that our little Katie is doing well. She has done so well for the past two days on her feedings that they have increased her milk allocation from 4.5 mL all the way to 22.5 mL, which is about ¾ of an ounce. She tolerates the milk well, and has not shown any signs of reflux. We have been informed to expect some form of reflux, as the amount gradually increases. These tube feedings are really the highlights of our days. It may seem odd to think of getting joy from administering milk through a tube in your child’s nose, but for us it is one more step to normalcy. Furthermore, Beth is exceptionally happy to see some of the milk being used which she has produced through hours of impersonal pumping.Katie is still showing signs of narcotics withdrawal, while not so much in a frenzied quake, she is still very agitated. This is in part due to small doses of Versed which whe still gets when she becomes inconsolable. She keeps her hands in what I can only describe as a boxers pose. Both of her fists are clutched tightly and in front of her face. You can see the intensity of her discomfort on her face, and feel the tension in every muscle as she continues to fight these alien feelings. It is amazing how much conflicting information can be received in a hospital. Yesterday we were told that these withdrawal symptoms may only take two or three days to go away. Today we were told by another that they can sometimes take weeks.During the past two weeks Katie, has kept her hands balled into fists more that any other position. In this fashion she keeps her thumbs pulled to the inside and curled under her fingers. The doctors have informed us that this is sign of discomfort. I can’t imagine why she would have been uncomfortable during this time, can you? Anyway there is now concern that due to the fact that her thumbs have been compressed for so long that they may actually “freeze” in that location, or have loss in their range of motion. In order to remedy that, small little neoprene splints have been applied to each hand. These little splints are basically little loops through which her thumbs have been inserted and extended outward a bit by using a little tension down to her wrist. This only affects the joint right next to the palm, not the entire thumb. At first glance it doesn’t appear to be doing anything unless you compare a splinted thumb to a non-splinted thumb. Here again if you use your imagination it kind of looks like she is preparing to go bowling.There was another milestone today as well. Not so much for Katie, nor for Beth or I, but for the much deserving grandparents. Today was the first time that she was allowed to be held by anyone other than mom or dad. If you want to see a grown man cry, just hand over a new grandbaby to John Cole. Momma and daddy, as well as Joan got to hold her today. We are saddened by the fact that Papa Bennie didn’t get to hold her, but he is graciously holding down the fort at home. I will personally see to it that he gets lots of Katie time during his next visit.As we travel the 20 miles back and forth from Duke medical center to our home away from home at the Parker Reese foundation House in Hillsborough we have begun to take stock in what has happened to us. We are trying to keep a running tally of the gifts, gestures, and help that we have received from so many. It is hard to list them all. We begin to reflect on time spent away from our church, our extended families, our friends, our jobs, in short our lives have been put on hold. Any and all former obligations seem almost trivial compared to what has been happening to our little family (little in number,…watch it, I heard that!) In the twelfth chapter of Luke, part of verse 48 reads: “For unto whomsoever much is given, of him shall be much required.” As the old, old hymn that my parents love to sing states “I found a treasure! I am rich beyond measure….” It is amazing how much a soul can love a being so much, not just from birth but from conception. We love our Michael and Katie more than anything on earth. We have been given the great and awesome responsibility of parenthood. We have been given much, and much is required of us. As I have said many times, “we will grind whatever grist the mill requires” in order to see our children healthy and raised in a caring, structured, God fearing home. For those of us who have been given the gift of salvation, much is required as well. I have no doubts that the Christian traits being shown towards our situation by so many are the true fruits of faith, and Godly love.To many of you reading this, Beth and I, along with all of our thanks, would also like to send our apologies. We are sorry for the days of work we have missed, which more than likely has caused many of our coworkers to have to pick up extra work loads. We apologize to our friends to whom we have not been able to visit, or talk to like before. We also know that it goes without saying that you all understand. The outpouring of love being shown to us is extremely humbling.With the Lord’s continued blessings, Katie will continue to improve. We know that we still have several weeks of recovery, rehabilitation, and physical therapy ahead of Katie, but with your continued support we will surely make it.

Day 13--April 22, 2009

2009-05-17T21:15:00.004-04:00

As we look back on our time here during our “adventure” it is hard to believe that tomorrow will be two weeks. In some ways it seems like years and in others, mere minutes.I had hoped to be able just to tell you all that were still at the status quo or better, however such is not the case. Upon arrival at Katie’s bedside this morning, we were once again greeted by our old friend the nasal canula. She is still having some trouble keeping her oxygen saturation levels up. We can handle this as it is only mildly intrusive, much, much better than intubation. Katie is not very pleased with it in conjunction with the naso gastric tube, and she quite frequently tugs at them, so much so in fact that both have had to be securely taped in place. All these things are nominal to us, as we are so proud of the strides she has been making.This evening was a different story. She was completely removed from the morphine at 5:00. By 9:00 pm Katie was showing signs of withdrawal. She is presently in a state of excited frenzy. Her little hands are contracted into white-knuckled fists. Those same little hands are in a continuous quiver. In nearly spasmic fits she will draw her knees from full extension into the fetal position and back again. On occasion her head will twitch uncontrollably from left to right in a reciprocating fashion. She is ravenously attempting to devour her pacifier or anything that gets near her mouth. If she, in her rapid shuddering, knocks the pacifier out of her mouth, she tries to eat her fist. The pacifier is one with a hollow nipple into which a finger can be inserted (not mine, a normal sized finger), and Beth says that she nearly chewed a bruise on her finger tip. Beth held her close for quite a while as she attempted to calm her tremors, but to no avail. We understand that this is a natural process and also an inevitable one, but it is difficult to see our daughter in such a state of confusion and unrest. The nurse practitioner finally approved a nominal amount of Versed to be administered in order to help calm her enough to rest. Hopefully it will also help slow her respirations which have been and extremely high rate today. At some points she was taking 90-110 breaths per minute. This may also be attributed to withdrawal symptoms. We were informed that this process normally takes two to three days, and that we should see steady improvements.Just as with everything else, it seems that Katie is above the curve. Our nurses told us that typically infants that have been taken off of morphine frequently enter a panicked state and not only tremble and jerk, but scream and cry. Katie is such a trooper that she has only whimpered and given soft little grunts. When we said our farewells for the day, she seemed to be resting tolerably, but not sleeping.Once again, as we often do, Beth and I searched for God’s message to us today. What was the silver lining? We are thankful that Katie will never remember this. We will never forget, but she will only have the memories that we give her as “Katie’s Story.” What a blessing that must be, to have all this suffering totally erased from memory. It reminds us about the memory of our Lord, once we have accepted him as our savior He totally forgets all of our previous pains, faults, shortcomings, and sins and casts them as far away from us as the East is from the West. Oh to be as innocent as this little child in the eyes of the great Judge!To many, these little snippets may seem to cry out “oh what pitiful stuff,” but to Beth and I, these daily thoughts are a source of strength and encouragement. We are assured by the Heavenly Father that we will never have more put on us than we can bear. Again for this we say “thank you Lord and we love you!”

Day 12--April 21, 2009

2009-05-17T21:13:00.002-04:00

I am pleased to inform you all today that Katie is doing much better.We called over this morning to see how she was doing as we had gotten a little behind and were later than normal in leaving our home away from home. Perhaps this was again the Lord’s hand in our journey here. It seems that the doctors were performing some sort of surgical procedure on another child in the room with our Katie, and the room was quarantined. I have discovered that some of these children can be so unstable they may not be able to survive the transition to an operating room. In those cases the operating room comes to them and the room is turned into a sterile place. That’s what happened today. We were not allowed to go in the room until about 3:30 this afternoon.We were assured by the nurse that she was doing magnificent.Once we were finally allowed to see our little one, I was very pleased to see that the IV in her scalp had been removed. All of her blood cultures had come back as negative for infection and the x-rays had shown that the gas/air pockets had nearly been reabsorbed by her body. We are so thankful!While I was there, the nurse inserted the naso-gastric tube, much to Katie’s dismay. This caused much gagging and coughing on her behalf in an effort to dislodge the tubing, but to no avail. It was securely taped to her cheek in order to keep her from removing it. After only a couple of minutes she began to settle down, and resume her normal demeanor. As a parent it is difficult to watch your child fight at such an early age against what has got to be very uncomfortable; however I understand that it is for her own good.Once this placement of the tube was confirmed as being in her stomach and not a lung, she was finally fed for the first time. Beth and I were elated to know that at least some nutrients were at last being given to her other than intravenously. The amounts of morphine that she has been given was again dropped to 10 micrograms (see I am a quick study, I found out what to call those thingies!). We were also pleased to learn that hopefully tomorrow she may be removed from morphine entirely except when she shows signs of discomfort.The feedings will continue at 5cc’s every 3-4 hours until she has proven that she is tolerating them well. Then the volume will steadily be increased. We will not be able to feed her from a bottle or breast until she is breathing less than 65 breaths per minute. At present she is averaging around 80 per minute. She is working on one and one-third lungs and seems perpetually out of breath. If we were to try to let her suckle for food she could very well aspirate some of the milk, which could cause pneumonia. This could also be life threatening with her lung capacity. We are content presently to use the syringe and naso-gastric tube.We are again very thankful of the strides our Katie has made toward recovery. As I have mentioned today in a conversation with one of my friends, we feel very blessed while being ever mindful of the sufferings of other families all around us. Sometimes it is hard to see the workings of the Lord, and many times we do not understand those blessings. It seems that when we pray for miracles they may only come in the strength to deal with a situation, not necessarily as the remedy to the situation. In that capacity Beth and I say “thank you Lord!”

Day 11--April 20, 2009

2009-05-17T21:07:00.004-04:00

Our day started, for all practical purposes, yesterday. Upon discovery of those gaseous pockets, we have been on pins and needles ever since. While we did manage to get horizontal and sleep, it was only in the mechanical sense. Beth and I went through the routine, but there was little rest to be had.All of that changed around 6:45 this morning when the Nurse practitioner called and informed us that there was no change in those little gaseous pockets. As a matter of fact upon a cursory examination of the morning x-rays those pockets of air in her liver were hard to find. She then began to explain how well Katie had done during the night at that they had removed the tubes again, but I missed most of those due to the ugly crying that I was actively engaged in. You all know what I am talking about. The ugly cries are when the head and shoulder bobbing get in rhythm and the tears and mucus begin to flow freely. I was so relieved that our angel would not be rushed back into surgery, and could only slide off the bed and thank God again for yet another answered prayer on our behalf. This entire affair has been one of the worst emotional rollercoaster rides I have ever been on. It seems that at least for today, we have once again made it out of the valley and back on top of the mountain. Currently we are waiting for the results of the blood culture that was taken yesterday. If the results of this show that there is no infection, then she will again be taken off of the antibiotics.Her respiration rates are very high at 60-80 per minute. They should be around 30-40. This is expected as she is working with only one and one-third lungs. At this rate she will more than likely not be able to suckle a bottle and breathe sufficiently at the same time to keep her blood oxygen saturation levels up. With this in mind, the current plan is to insert a naso-gastric tube through one nostril into her stomach in order to introduce milk via syringe. We were informed that they would start her off with about 9cc’s of milk. If she tolerates that well, the plan then is to gradually increase the frequency before they increase the volume. Today is eleven days since her birth. She has not yet eaten anything. All of her nutrients are being delivered through IV’s. It is becoming evident that as they also gradually reduce the amount of morphine being given to her that she is showing signs of hunger. Today it took very little coaxing for her to latch hold to her pacifier, and begin to vigorously pulling on it. When the pacifier is not in place, she shows signs of “rooting” around, especially the back of her hand. She has been given a couple of drops of glucose gel on her pacifier, which she really seems to enjoy. I can’t wait until they feed her. With all of the other trials that she has gone through, hunger should be easy to fix.Her morphine drip started off at 70 some units per hour (sorry, here is where I forgot the official unit name. My memory is about as long as my finger. That is why I write this stuff down. For now though they’ll just be “thingies”). She remained at 70 thingies until several days after the surgery. They have been dropping by 10 thingies a day for the past couple of days. Today she was at 20. This is not only to gradually reduce her pain killers as her pain is naturally reduced, but also to prevent her from going through horrible withdrawal symptoms.We forget sometimes about the heavy cocktail of narcotics that have been administered to her since she was only 3 hours old. If these were to be stopped all at once she would be in full blown withdrawal, and in her fragile shape this would be catastrophic. Each day though as she is given less and less, her eyes brighten a bit more and she is becoming a bit more interactive. She will focus on items for a short period of time before dozing back off. We have looked forward to our visits when they allow us to hold her. This has become a special treat. Right now only mom and dad can hold her, which is a source of great frustration for these devoted grandparents. Each and everyone of these wonderful people has spent countless hours of running up and down the road from home to here, feeding our goats, chickens, and dogs, preparing food, watching Michael, checking mail, and bringing things we are in need of. Their demonstration of love and devotion to our little family has been truly selfless. Joan has even moved in at our home away from home and watched Michael for us so that we can be with Katie when we can. Beth and I love them dearly, and will never be able to thank them for all they have done. I know that I am a young father, and only have two children both under the age of two, but I can attest to the love a parent. These grandparents are demonstrating their support for us as only the most pure love can inspire. Should any of you see one of them in passing please thank them for me.As strong as this love is, it can no way compare to the love that our Lord has for us. We have felt the warming blanket of God’s love swaddling us through this adventure. We are thankful for all of his blessings, the many that we see as well as the many more that we do not. When all is well it is hard to see God’s hand in everyday life. However, in this, Beth and I see his work in everything. His grace is sufficient and we praise His holy name.

Day 10--April 19, 2009

2009-05-17T21:05:00.002-04:00

It is with an exceedingly heavy heart that I must relay to you that our little girl has had a set back.The day started off well enough. Papa Bennie and Nana Joan had plans for a nice breakfast. They had prepared eggs, grits, bacon, and those little silver dollar pancakes. Michael really enjoyed those. I had decided to stay back this morning and watch Michael so that Beth and Joan could get in some Katie time. While Bennie and his pal Vic worked on repairing the back stoop/landing of Parker’s House, Michael and I took the golf cart and rode over the farm looking for deer. We were having a good time together.Beth called a short while later and informed me that Katie had had a difficult night and was working really hard to breathe. Her blood oxygen saturation levels had begun to drop so she was provided a nasal canula (those little tubes inserted a short way into the nostril. I am learning so much medical terminology). Through this tube a small amount of oxygen was being delivered in order to help raise her oxygen levels without her having to work so hard. This in and of itself is very minor. However we were informed about 4:00 that something had been discovered on a follow up x-ray.Apparently there are some small pockets of air that are trapped inside her abdominal cavity. We were informed that this was to be expected as her insides were outside for a short while. It is common for some air to become trapped inside of a body after surgery. The doctors had been watching one of these bubbles unbeknownst to us. Today upon examination of another daily x-ray a second gaseous pocket was discovered near her liver. This caused much concern as it had not been seen before. As a precautionary measure the siphon tube was reinserted through her mouth into her stomach, in order to lessen the buildup of more gases in her digestive track.It was explained to us that there could be basically three explanations. First, and most desirable is that this air was also trapped inside during surgery, and had just been overlooked in other x-rays especially since they were focusing on other issues from the surgery. Should this be the case, those pockets will not grow in size, and will be reabsorbed into the body.Second is that she may be developing an infection. Upon checking her white blood cell count, it was determined that they were very slightly elevated, which may coincide with this explanation. Because of this possibility, she has been prescribed a regimen of antibiotics. Presumably this will remedy the situation.Thirdly, and most disturbing is that she may actually have a hole in her bowels. If it is found upon the next x-ray that the pockets are growing, she will be in imminent danger. She will be scheduled for surgery as soon as possible for doctors to go in and determine the location of either the leak, damaged bowel, or even dying sections. This is the most extreme possibility and we pray that it is not the case. I am suspect that there are those among you that may be becoming resentful of these daily updates and the constant requests for prayer for my little one. For that I am sorry. However, I can’t help but feel the need to ask anyway. She was not born deserving the pain and suffering that she has endured for the past ten days. Neither would Beth and I have asked for it, but we would not trade our little darling for anything. She is a very significant part of our lives, and has been for the past 42 weeks. Even from conception she was talked to nearly every night. I would read books to her while in utero. The normal expectations of the typical newborn delivery and trip home were dashed within 3 hours of her birth. I long to have her whole, and peacefully sleeping on my chest as I sit in my recliner at home. This entire situation has been terribly taxing upon the constitution of my family. We have been so blessed with the great strides that Katie has been making, that this sort of caught us off guard. We had been warned that there could be complications, and our heads had received that message, but our hearts had not. This news has made my day very bleak. My mood was reflected in the cold, overcast, and drizzly weather here this afternoon.The next x-ray is scheduled for sometime between 5:00 and 6:30 am in the morning. Once these new medical images are reviewed we will be informed as to the outcome up until that point. Our lives will then be measured in twelve hour increments. This is the frequency of follow-up x-rays until a definitive conclusion can be derived as to the origins of the air in her abdomen.. This has in no way lessened our faith in the Almighty, our sincerest desire that His will be done. We can in no way aspire to explain His divine works. We can and will, however, accept them with open arms. Once again please pray. I will update you all as news arrives

Day 9 -- April 18, 2009

2009-05-17T20:59:00.003-04:00

We have had a wonderfully boring day! I know that seems a bit counter productive. However anything not going backwards is good for us. Katie is still doing remarkably well, Beth is not. She had to go back to the Doctors office yesterday. Her blood pressure is still high. She is fighting severe fatigue from worry, lack of sleep, traveling up and down the highway and bouts with her stomach. She was up about every 20 minutes and in the bathroom last night. At this point it was remarked by a family friend that Katie looked better than Beth.With that said I left Beth at Parker’s house and went for my morning visit alone. This was a wonderful experience as I got to hold my darling Katie for almost two hours.She has been showing signs of much labored breathing most of the day. Her little diaphragm has been working overtime to make up for eight days of artificial respiration. So the decision was made to keep her morphine drip and IV fluids at the same rate, for one more day to allow her body to adjust to life on its own. Perhaps tomorrow if she is strong enough, we will be able to introduce a bit of momma’s milk. We did have a third messy diaper, and she is becoming quite gaseous. This is of great delight to mom and I, as this is evidence that her bowels must be working properly. At least we pray to that end. After the obligatory trip back to Parker’s House for some Michael time and supper, Beth and I headed back for our evening Katie “fix”. What started out as a fairly hum-drum day, turned quite exciting!As luck er…..uh misfortune would have it as we exited the doors of the parking deck elevator on the Rapid Transit level, the doors to the rapid transit shuttle were opening. For those of you who are fortunate enough to not be familiar with Duke University Medical center, there is a rapid transit tunnel that runs under Erwin street to the bottom floor of the hospital. One can either walk the tunnel, or catch the little tram like shuttle. This shuttle more resembles a horizontal elevator. We entered the shuttle with another couple and their eleven year old son. After the short ride through the tunnel, we were surprised that upon arriving at our destination that the outer doors opened but not the shuttle doors. Hmmm? We all said in unison. What is this? Then the outer doors shut and the lights went out. Then is when the mild panic set in. There were emergency lights, but we were stuck. After pressing the emergency button several times, we noticed a service technician through the window. He promptly climbed into the shuttle through a window and quietly and professionally began to dismantle several control panels. After several minutes of frustration at the lack of response to his calls over his radio, he then manually disabled the door locks and we pried open the doors. Not once did he speak or smile at any of the occupants. His work went uninterrupted even by the extremely inquisitive pre-teen. We thank this unsung hero of the underground transit system for freeing us from what could have been a long and boring night.This may have been our last trip on the rapid transit shuttle.Once to Katie’s room I was delighted to just silently watch my loving wife cradle our delicate little one in her arms. Beth also managed to introduce a pacifier to her. No one else has been able to get her to suckle. Many of these babies lose the instinct to suckle and swallow after intubation. Many lose the coordination to suck, swallow, and breathe. After a little coaxing Beth managed to get her to perform these tasks quite well. We were very proud of her. Not only is she a physically strong fighter, she is also a quick study.I am sure that this update has been far less riveting, but rest assured that it was much easier to type without having to squint through tears. I hope that in the coming days, I too will be able to say definitively that this may be the last update. Until such time as we are blessed enough to return to our own home, and bring our entire family, I guess I will continue the daily updates for the hundreds of people who continue to request them.Please continue to pray that our Heavenly Father will persist with his blessings for our Katie. We know that without him, the successes that we have recently enjoyed would not have been so expedient.May God shower his blessings on each of you as well, for the continued support you have shown for my family. Mere words cannot express the gratitude that Beth and I have for each of your efforts.

Day 8 -- April 17, 2009

2009-05-17T20:35:00.006-04:00

What another wonderful day the Lord has made!

Our fatigue was greatly reduced today by a rush of enthusiastic adrenaline! Our scrappy little angel has fought so hard and recovered so well, that she has outworked the ventilator. She had been breathing over the ventilator most of the night. The respiratory therapist spent all evening turning the ventilator down by degrees. At about 9:30 this morning she was fighting the tubing itself, so the decision was made to entirely remove the ventilator.

I don’t know if you completely understand the magnitude of the previous statement……she is NO LONGER ON THE VENTILATOR!!!! Less than 48 hours after a very invasive procedure this tiny little powerhouse has shown the entire medical community just how prevailing the power of prayer and faith is. This little bundle of pure determination has done in 8 days what it takes many infants born with Congenital Diaphragmatic Hernias several weeks to do.

We were hoping for just the removal of one tube, instead we were pleased to discover that in an amazingly short period of time the Ventilator tube, the siphon tube going into the stomach, and the lines going into her umbilical were entirely removed. When we go in now there is a precious, albeit quite sedate baby girl there. Her face is completely unobstructed from view, save a little tape residue on her upper lip. This is easy to overlook, and her innocent beauty radiates through it.

The nurses, each and everyone being aware of my affinity for pink and ribbons, made a little pink bow and “glued” it her head with a little medical jelly. It was absolutely adorable!

About 4:15 this afternoon yet another line was removed. The large femoral line in her right leg was removed. Just before this event happened dad got to change a diaper. Who would have ever thought that diaper changing could be looked forward to so much? Speaking of diapers, little miss Katie also made a messy diaper today as well. Now I know that most parents usually abhor those things, but for us this was an important milestone.

All this has happened so fast that we can hardly believe it.Our current schedule goes something like this.

As this progresses, take into consideration that we are not allowed in the room with Katie during shift changes. They occur from 6:30 until 7:30, morning and night. The doctors make their rounds in the hour or so after that. When they are in the room we have to leave in order to avoid hearing diagnoses or procedures on the other patients. So we tend to stay at Parker’s House until about 9:00 or 9:30. This way we get to get Michael up and fed and spend some good quality time with him. After that we are at Duke. We normally go back to Parker’s House about 6:00 or so each evening for supper, and more Michael time. Once he is in the bed about 8:30 or so, we scamper back to the hospital.

Tonight was an extra special treat. Hold on to your seats! We got to hold her!!! That’s right! Rather than watching her breathe, we were able to hold her to our chests and feel her breathe. This was another emotional ride! How long we have waited for this. Beth was a giddy school girl again! Tears of joy came from every eye in the room, except for Katie who was content to remain in her perpetual state of semi-consciousness thanks to the Morphine drip. Also for the first time since her birth we were able to hear the faint whines and whimpers of a child who has not been able to make a sound due to intrusive medical tubing chafing her vocal cords. This precious little sound was more like the sound of a tiny newborn kitten than that of a full term baby girl. We are elated to hear anything. We both long to hear the full out cry of our newborn baby girl. I am sure that desire will be short lived when we are at home and it is 3:00 in the morning, but I will not complain!

Yet another marvelous bit of news was relayed to us by Katie’s nurse this evening: tomorrow they will insert a nasogastric tube through one nostril into her stomach and begin “trickle” feeding some of the liquid gold that Beth has so graciously, and laboriously provided. This trickle feeding will initially be done with a syringe until they get her digestive system “primed”. If Katie tolerates this well, and her respirations continue to improve, within a day or two we will try to teach her to suckle and swallow normally.

We are very pleased at her progress. However, we have noticed that the staff here, while sharing our delight, is reluctant to provide too many positive predictions. I know that we are sharing all of the wonderful news of her speedy progress, but we all must understand that setbacks and future unknown complications are a very real possibility. We have not let our current successes and forward progress to lull us into a false sense of security. We are praying just as hard, and request the same from you.

Thanks again for all you have done for us, and forwarding along “Katie’s Story.” I am certain that once she learns about her miracle beginning she too, will thank you for all of your “knee time!

Day 7 -- April 16, 2009

2009-05-17T19:05:00.004-04:00

Today’s update is quite a bit less spectacular. We are pleased to report that nothing negative has taken place and we are holding our own. We are very satisfied with happy and stable. Beth and I have been given much heads up about the post surgery time for darling Katie. There were no gray areas to assume that she would not be very ill when she came back. We are exceptionally delighted to share that she has not required any blood medication as was expected. She has managed to do well without it. Also about 10:30 this morning she was switched from the High Frequency “jet” ventilator to the conventional ventilator. Hourly “blood gas” levels are taken to ensure that there is enough oxygen and not too much carbon dioxide.

Over the coming days the respiratory therapists intend to gently wean her off of the ventilator by gradually reducing the air pressure per breath until her diaphragm is strong enough to do the job on its own.Her petite little body has been invaded by surgical stainless steel. What was normal for her has been rearranged and shaken up like a maraca. She has new lung tissue that has to learn to work, and a knitted diaphragm that we are all expecting to begin working all at once. Patience grasshoppers….patience.

I am painfully aware that this is easier said than done. While I do adamantly believe in miracles wrought by the Almighty, I understand that His natural gift of healing may be lengthy. We are only looking forward to when the first invading tube can be removed for good. Then we will wait with baited breath for the next. We have forbidden ourselves from trying to look too far ahead, as the perpetual suspense may be more than we can bear.Speaking of “bearing”; now that the surgery is complete and we are waiting for time to heal all wounds, we have noticed finally how utterly exhausted we both are. There has been little sleep between us, and that which we have gotten has not been terribly recuperative. Our nights at home over the weekend, while great, were even hindered by the incessant thoughts associated with the uncertainty of our situation.

Granted we have been spiritually strong and at peace with this, however we are becoming emotionally and physically spent. Beth especially is becoming weaker by the day it seems. She strongly and deeply believes in the benefits of breastfeeding our baby. As little Katie is a bit indisposed, momma must pump. Child or no, this requires an every three hour vigil to collect the valuable liquid, appropriately label it and the freeze it for such time as when Katie can be fed for the first time. This somewhat monotonous chore can at least be easier to tolerate for a mother when the child is next to breast, and some wonderful bonding time can be realized. With our current situation, that benefit is not enjoyed. The work has to be done with little emotional reward.I have a wonderful wife, to whom I am deeply and passionately devoted to. I can think of no other that I would want to have to share this experience. She is a loving and caring mother, who gives entirely of herself for our two little ones. She has become the focus of concern among the Nursing staff here at Duke. Quite frequently pale, less frequently weak and dizzy, the Charge nurse had her escorted over to labor and delivery last night to be checked out a bit. Her pulse rate and blood pressure were incredibly high. I am glad they didn’t check mine. She has been trying to take it easier today since hopefully the worst of the crisis is over. Otherwise she will be pummeled by the nursing staff here.

We have become quite attached to all of the Doctors and Nurses here, as they have been extremely kind and caring. They all seem genuinely concerned and emotionally attached to our baby girl. One of Katie’s primary nurses, Shannon, even presented us with the gift of a 0-3 months sized set of clothes. The likelihood that Katie will be wearing the newborn sized clothing that we brought to take her home in is relatively slim.

The Parker Reese House that we have been so fortunate to have been allowed use, has been a huge help. Michael has been able to somewhat settle into a new routine in new surroundings. It has also provided us a private and secluded place to gather our thoughts and emotions. With the help of Beth’s mom and grandparents we have enjoyed home prepared meals. We have also had the much needed “decompression” time by relating our experiences with family and friends that have come to visit.We are not allowed to be in the room with Katie during morning and afternoon shift changes or when medical updates are being made on children in the same room with her. This violates HIPPA laws.

With all these things in mind, we are kind of settling into a routine of staying with Michael at the Parker Reese House until after the morning shift change. This way we can get him up and fed and at least be there to start his day. Then it is off to Katie’s place. We try to come back to the house in time to share supper and some time with Michael in the evening. Once he is in the bed we normally go back to the ICN till around midnight or so. I have attached a picture that shows that you can find beauty in the strangest places. This little duck sticker holds down her temperature probe. The other picture is just another photo of little feet.

Thanks for all of the prayers, care packages, letters, cards and gifts that we have been inundated with. Each item came wrapped in love that is tangible.

God bless you all!

Day 6 -- April 15, 2009

2009-05-17T18:48:00.004-04:00

Praise the Lord! Praise the Lord! Shout it from the roof tops! Shout it from the Streets!

Little Katie’s surgery went exceptionally well. They took her for surgery about 10:45 am. I received a phone call about 12:10 that the surgery was underway and that things were going good. Apparently there was bit of a delay in getting started. We were told to migrate to the third floor surgical waiting room, for updates. So we Cole’s (we had not only family, but friends and church members here. At this point they were all Cole’s), being herd animals, all packed up and made the journey to this new area.

We had been there barely 30 minutes or so when the call came via the waiting room receptionist that the surgery was over, and that they were closing.WHAT????!!! We all cried. This could only mean one thing,…..since no surgeon or nurse had come to inform us of complications, it had to be great , right? We were told that the Surgeon would come and give us an update in 30 to 40 minutes. We were ecstatic to say the least.

It was at this point that I remembered that I hadn’t really eaten anything since about 6:00 yesterday. As love and devotion to family would have it, Beth’s MaMa, Mrs. McDuffie came in like Yogi Bear with a “Pickinic Basket”, asking would you like a ham or bologna sandwich,? Cheese? We have mustard and mayonnaise. Chips anyone? I had begun to enjoy what was to be the first of many ham sandwiches today when I saw the surgeon coming and the receptionist pointing in our direction. “What do I do with this thing?” I thought to myself. And like any self respecting Agriculture teacher I quickly stuck it in my left pants pocket. More on that later.

The Doctor said that her surgery went as smooth as any one of these procedures ever could. They were able to return the offending organs to their proper positions with no complications. The hole in her diaphragm was small enough with enough thickness of tissue to allow them to simply suture it shut.MaMa began boxing up the buffet at about 1:10. This whole surgery thing was a whirl wind affair. We thank God from whom all blessings flow! We went back to the Intensive Care Nursery and set up shop there. Within about 45 minutes or so we were called back to see our little girl.

You know, the mind is a funny thing. I had expected her to look much worse. However, I was pleased to find that she looked just the same, save the steri-strip covering a small and incision about 2 and ½ or 3 inches long. This incision runs at a downward angle, generally following the contour of her ribcage.She has also had to have the IV reinserted into her scalp, and another line in the femoral artery on her right leg. She is managing to have continued acceptable blood pressure levels, and has not needed to be put back on any medications.The Surgeon said that she had a little bit of lung material in there, which gave us a lot of hope.

When we actually got to see the x-rays, we were very excited to see that she actually has about one third of a lung! The Respiratory therapist said that she had the equivalent of the complete upper lobe of her lung. It is expected to continue to grow until she is about 10-12 years old. While it will more than likely never be as large as the other one, it is expected to grow. He seemed to think that there should be no reason why she shouldn’t have a full and normal life.

Again all of this excitement is dampened by the fact that she is once again had to be put on the high frequency ventilator at 420 breaths per minute. She is obviously in some pain as on occasion she grimaces and you can see her heart rate and blood pressure rise. This is remedied by the application of morphine or versed. The next couple of days will be just as perilous as the first four or five. We have not cleared this hurdle, but rather are perched precariously at the top.Your thoughts and prayers have been heard by the Father and have obviously made a profound impact upon the wellbeing of Katie.Don’t touch that dial! Daily updates to follow…..same Katie time, same Katie Channel!

(by the way…..I found the sandwich as soon as the surgeon left. It was just as good as before I hid it away!)

Day 5 -- April 14, 2009

2009-05-17T18:39:00.004-04:00

Well here is the next issue of the daily drama known as “Katie’s Story”.

Today was a busy day. This morning started off with the obligatory early morning trip to the sink to continue the perpetual scrub and rinse, scrub and rinse. Upon donning our stylish, rakish, and debonair hospital aprons we made the trek down to Katie’s cubical. She looked so good, all things considering. She has been removed from the high frequency ventilator and placed on a conventional ventilator. This makes her look like she is breathing normally at about 30 breaths per minute. She has been removed entirely from the nitrous oxide. She is currently on 21% oxygen, which as I have learned is the same amount as what we are all breathing right now. They have taken the “shades” off of her eyes, allowing us to see her beautiful brown eyes.
She is very observant, and quite readily follows you when you move. She is obviously a bit drowsy due to the morphine drip to help her stay comfortable. Once while we were in the room the Nurse needed to change some of the bed linens. While she was working, she made the comment that this job would have been much easier if she had another set of hands; all the while giving Beth a sneaky little smile. Beth jumped on the opportunity to help pick up Katie. Beth was able to gently slide one hand under her little bottom and the other under her head and shoulders and pick her up a couple of inches. This small moment of ever so gingerly elevating Katie above her bassinet brought immense joy to Beth. She exited the ICN prancing like a school girl on Christmas morning that had eaten 5 candy bars. You could not have given her a gold bar and made her any happier.

This precious moment was priceless.We spoke with the doctor this morning and he said that she was as good as she could be without the surgery. Her prognosis looked really good, according to him.We were asked to allow another family use the little room that we had been “living” in since Thursday night. We were prepared for that eventuality, and did not begrudge relinquishing this little oasis. As the Lord has taken care of our every need thus far, we were prepared to take our share of the burden. As a matter of fact, we came prepared to sleep in the car in the parking deck if need be. However, as God’s grace is sufficient, we were called about an hour after turning over our little room, and officially offered the Parker Reese House in Hillsborough.

Since Katie is so stable we decided to go and find the house, and become familiar with the route. 20.4 miles and about 24 minutes later we found it. The house is located in the middle of a dairy farm turned haven for CDH families. It is a beautiful three bedroom, two bath brick home. This place is such a blessing! We are the fifth family to use this in its current role. There are photos of the families who have been here before us. Each room has several photos of the children this place has benefited. We are anxious to add our little Katie to the collection of scarred angels.

Nanna Joan and Papa Bennie packed up and brought Michael to the house this evening. We have enjoyed our time with him tonight. Since he was in a new place and we hadn’t seen him in a while, we let him stay up a little later tonight than normal. This house has a child’s room with all the amenities including farm murals on the walls, and toys.

Due to some signature problems and the faxing of forms between Durham and Charlotte I was unable to do the direct donation of blood today for Katie’s Surgery. The next opening that I could donate would be Friday. The Doctor thinks she will only need one unit anyway, so my contribution as well as the contributions of other thoughtful family members and friends is presently unneeded, at least for my Katie.

We were informed that her surgery is scheduled for 1:45 tomorrow (today now….I have really got to get these updates in before midnight). The surgeon said that the procedure would take two to four hours. We appreciate all of the well wishes, and prayers that have been offered toward heaven for our baby, however we ask that what ever you are doing tomorrow at 1:45 that you put it down and ask the Lord to guide the surgeon’s hands, to make them swift and accurate. We ask also that the Great physician apply a healing touch, which only he can provide. We will pray without ceasing for the duration of the procedure.We are now going to head back to spend the evening with our daughter. We will also be with her early in the morning, and up until they take her to prepare for the surgery.

Your replies have been a huge blessing. Thanks for all of your prayers. Keep them both coming!

Day 4-- April 13, 2009

2009-05-17T18:31:00.004-04:00

WOW!!
Wow is all I can say. It seems that what started out as a way for me to put frustration and emotion in print, has turned into the daily SOAP which is tuned into by scores of caring and concerned people. I would never have imagined that the ramblings of a set of dazed and confused parents would have ever made it to so many people. Beth and I both have been getting literally dozens of e-mails each per day. Many are from people we don't even know, as well as from all over the country.It seems that as we send out the updates to our friends and co-workers that they forward it to their prospective Churches or other interested parties. We have taken a quick tally and as best as we can figure, we have made it onto somewhere a little over 100 different church prayer lists.We have begun a file in order to keep the hundreds of e-mails that people have sent. It has become a favorite treat of ours during the “down time” around here to read the e-mails that are being sent. We may not be able to respond to most of the e-mails we get personally but rest assured that we read each and every one. Please keep them coming. We love reading them all.As a matter of fact we intend on making a collection of these e-mails and the daily updates into a “Katie’s Story” that we can share with her once she is old enough to hear about her miracle birth.

Well now for what you really want, an update. We returned this morning from our Easter Sunday recuperative and regrouping trip. By the way, this short foray was more needed than we had anticipated. We were able to spend time with our 2 year old Michael, as a family again. We were able to attend the Easter Service at Church where we were met with countless hugs and tears as we entered the doors of the sanctuary. It seemed to us that the sermon and each and every hymn were chosen to strengthen our resolve. Most of the service was spent dabbing damp eyes and cheeks by Beth and me. We were surrounded by our church family and cloaked in the warm blanket of prayer and God’s love in a special prayer for baby Katie.

Upon returning home we made a good home cooked Sunday lunch, which we sat at our dining room table and ate as a family. The feeling was that his would be our last home cooked meal for a while. This time of rest and regrouping at home did wonders for Beth’s condition. She has made a huge rebound and doing quite well, for having had a baby so short ago.When we retuned to the ICN here at Duke, we were eager to see our daughter. We promptly received permission and scrubbed up. Once in we were pleased to see that Katie looked really good! She had become a bit jaundiced and had been under a bili light. She was a pink as could be today! Also we were pleased to learn that she had been removed from all of her medications and was doing well! She has also been removed from the nitrous oxide and returned to oxygen. She is still on the high frequency ventilator, but the doctors plan on transitioning her back to the traditional ventilator by tomorrow. By all accounts she is as good as she can get without the surgery. We were informed today that it takes most children with CDH two to three weeks to become stable enough to be operated on.

Upon doing some research on this little known condition we have learned that we do have a huge head start over most other CDH babies. Once again praise the Lord! Many have asked about our housing/ rooming condition. Currently we are fortunate enough to have been assigned a “care by parent” room. This small room is located near the ICN, and has some chairs that fold out into “rock garden” cots/beds. It does have a private restroom with shower, which has been a God send in and of itself. This situation is tenuous at best as this room is normally reserved for families that have children that are being discharged, but mom and dad need a day or two of hands-on training for the care of their sick child.

Just as God’s blessings flow without end, we were approached about some housing near by. Before I explain this let me share that we have had no less than 4 offers from friends and acquaintances to use their homes nearby. We are supremely appreciative of this, and had planned to endure as long as possible without imposing on friends. However this may not be necessary at all. There is a group which supports parents and families of babies with CDH called the Parker Reese Foundation. This non-profit institution is devoted to finding a cure for this condition and helping those families affected by it. They have a house located about 20 minutes away in Hillsborough, on a dairy farm. It has been offered to us free of charge until Katie is discharged. How good is our God?!!We will know tomorrow more about this prospect.

Other activities scheduled for tomorrow is that the Red Cross is supposed to send someone to collect blood from myself as well as Anthony and Dawn Marie Dagenhart, and my nephew Bobby. This blood is to be used as a direct donation for Katie’s surgery and recovery. Since we all give blood, the Red Cross assures us that these pints of blood will be able to be processed and used relatively quickly. Katie’s Surgery is tentatively scheduled for Wednesday.

Stay tuned for day 5, hopefully before midnight.

Again, thank you all for you for your e-mails. Please feel free to send any you wish.

God bless you all!

Day 3-- April 12, 2009

2009-05-17T18:09:00.007-04:00

What a beautiful day to praise the Lord. Happy Easter every one! Our baby girl seems to be making improvements by degrees. The Doctors have been able to remove her Cethetor and now she is actually urinating in a diaper!!! WOOOO-HOOOOOO!!! We'll take well any way we can get it.

Other exciting news is that she is stabilizing so well that they have been able to gradually reduce the amounts of her blood pressure medication until she is now not on any!!! So of the seven drugs normally given to infants with Congenital Diaphragmatic Hernia's (CDH from now on) she is now on NONE! Praise God.She is also being slowly weaned from the High Frequency Ventilator, and the amount of Nitrous Oxide that has been used has been reduced from 20 parts per million all the way down to .5 parts per million. All of you prayer warriers are fighting a winning battle!

We have had another really nice treat. We are allowed to come and "help" every four hours with her routine exams and cleaning. Starting at her head we get to remove those little shades and see her beautiful eyes. We then get to sort of swab her mouth out with gauze ans saline solution. It's kind of like washing her gums and lips. The nurses flush some of her lines to keep them clear and functioning. The tiny little blood pressure cuff is repositioned from either leg to arm or the other way around. They just switch it between the two places. Lastly we get to help change her diaper. Who would have ever thought that diaper changing could be so looked forward too? Mostly it is a time for us to touch and bond with our little girl. As parents we are allowed to do it with no gloves after donning a gown, a good hand to elbow scrubbing and copious amounts of that alcohol based hand sanitizer. You all know me, I am a mechanics teacher, a certified welder and all around lover of anything rusty or greasy, but I am the cleanest I think I have even been. My hands are washed so often they nearly stay "pruny".

With all of these improvements and would-be signs of getting better, our happiness is only dampened by the realization that we are trying to make her better only to make her worse. All of these steps have to take place to ensure that she is strong enough to survive the impending surgery. We have been told that once the surgery takes place she will be as sick or sicker upon completion as she was when she arrived. The two to three days after surgery are going to be very difficult days. We are stregthening our faith and renewing our contracts with the Lord, as we know that he will to continue to provide the wonderul peace that he has already blessed us with.With all of that said;....the factulty and staff have encouraged us to come home. We have two children and we cannot neglect our little Michael. So, we have come home for the day to have Easter with him, and attempt to have a somewhat normall day and night for his benefit. He is too young to understand why his little Katie can't come home. Beth is still also having to recover from delivery. She was released only about 16 hours after Katie's birth, in order to be able to be with her, but it has been really tough on her. She has been really weak and somewhat wobbly from blood loss associated with child birth. Added with sleepng in hospital chairs/cots has not helped either. Since Katie is so stable and doing so well were strongly advised to come and get some much needed rest, because the hardest part is yet to come. As we were told this is the "Eye of the Storm", that proverbial "calm". If there was a time to spend as some symblance as a normal family unit with Michael this may be it, for a while at least.

The thought was discussed about splitting our watches, but in short order the realization was evident that not only did Michael need us and we need him, moreover Beth and I need each other. So the painful decision was made to come home if only briefly.This was a terribly hard thing to do. My head understands it, but my heart was torn out having walking away from that room. However she is not alone. She has her own private Nurse practitioners and Registered Nurses watching over her 24 hrs a day. We were given a direct line to her bedside and encouraged to call as often as possible. Nanna Joan offered....er..uh...demanded to stay in our stead. Granny Irene and Papa John offered ...oops scratch that too...demanded that they get their turn tonight. Papa Benny has been so kind and selfless as he has been watching Michael. I know that his heart and desires are to be by little Katie's bedside, but he has been providing invaluable services as a jungle gym, "Mow Mow" driver, Shopping cart pusher, Supper buyer, Pajama puter oner, and yes even.......duhn duh duh duuhhhnnnnnnnnnnnn...............POOPY DIAPER CHANGER MAN!!!!

We Love all of these wonderful grandparents for the support that they have shown us. Beth's grandparents even sent us a package of home cooked fried chicken, peas, deviled eggs, potato salad, and chocolate pie. We had that waiting room smelling right! We will never be able to repay the displays and demonstrations of kindness that have been shown to our little family.I have attached a couple of photos of Beth helping with the those special touchy feely times. Since Beth is also a registered nurse she also gets some stethoscope time.

Keep the prayers coming!

Day 2-- April 11, 2009

2009-05-17T16:39:00.008-04:00

It has been a very long 48 or so hours here. So much has gone on and so many well wishers and visitors have been that it has been sometimes difficult to focus and process all that is going on. But here's an update.

Katie has what is called "Congenital diaphragmatic hernia". It affects about one in fourth thousand live births. This defect is a result of the babies diaphragm not closing entirely during development, which allows her bowels to encroach on what is essentially "free" growing room. As the lung is a hollow organ it is very easily displaced. She currently has at least one loop of bowel that goes nearly all the way to her collar bone, and apparently her liver is also in this space, and laying a bit on it's side, therby causing a dusruption of the circulatory system as well.

Depending on how early this breach occurs, determines how much lung development took place. We are hoping that it occured later in development and that she has a moderate to normal sized lung behind the other organs. However, we still understand that the possibilities are still very strong that there will be a greatly diminished and stunted lung on her right side. At present the left lung appears to be mostly normal and doing its job, albeit under great pressure from the right side. This has kind of squished her heart and left lung to the side and compressingit slightly against her rib cage. Not only is this condition relatively rare, of all of the cases only about 5% are on the right side. We would have had much better odds winning the lottery.Here is what has been done for her. If this gets lengthy, just close it out and come back later. I look forward to sharing with all of you, as it is somewhat theraputic.

When she arrived via lifeflight to Duke, (I actually beat them here), she had already been fiesty enough that she had pulled several of her lines out. She took a while to stabilize. Katie was initially put on a ventilator to help her keep her oxygen levels up. She had begun to show signs of repiratory distress early at Rex. She had to have an IV inserted into a vein in her head. She had to be given a unit of blood about 1:00am. This was to increase her blood volume in order for it be able to carry more oxgen. She again began showing signs of distress around 3:00am. She then had to be put on a different ventilator. It is called a high fequency venilator which gives her about 420 breaths a minute. It is was explained to us it is like a dog panting in order to more quickly remove the Carbon Dioxide build up in her blood. They have also had to switch her from oxygen to a mixture of Nitrous Oxide. This also also reduces the build up or production of CO2. At first it was a bit difficult to see her with this new device as it moves a lot of air rather quickly and obviously makes her jiggle a bit. Just like a dog panting after a long run.Around 7:00am a PICC lin was insterted into an artery in he leg. A small tube was then ran from that location through the blood vessel to near her heart. This allows quicker distribution of medication through he blood stream. This line also allows fluids to be given, which allowed them to remove the IV from her head. Another line was actually placed in a blood vessel in her ubilical cord and stitched. This allows them to be able to draw their blood samples through this line rather than having to poke her repetitvely.She is given a pain medication in order to help her rest and tolerate all of her new plumbing.

We are unable to really touch her as any outside stimulation causes her to respond and want to move, cry, etc. If she swallows air into her stomach it can pass on through her system until it reaches the loop, or kink up where her lung belongs. This causes a ballooning effect and even greater pressure. She has another tube down her throat into her stomach in order gently syphon off any air she may swallow, or any gases that may form.She also has "shades" over her eyes to keep light out, and Bose head phones with "white noise" to drown out any outside noise stimulation.

This has been one of the hardest parts. She is so beautiful, and we love her so much, but we are not encouraged to touch her. Beth was allowed to touch her briefly when she finally got here from Rex. I have decided to not touch her until such time as she is stable enough. I do not want selfishly and needlessly endanger her any further.

Now for correcting this issue. We are expecting the surgery to take place on Monday or Tuesday. We will know more when we actually meet with the surgical team. I know that this happened for some reason. I am really very comforted to know that it is happening over the Easter Weekend. What a wonderful tesitmony Katie is going to have. We are so thankful that our Saviour came here and was persecuited and crucified and ultimately resurrected to pay for our sins. We will never know the sacrifice that was made for us, we just have to appreciate it. I find comfort as well that so far Katie's darkest hours were in the early morning hours of Good Friday, and perhaps her greatest strides toward stabilization towards surgery may happen on Resurrection morning.Praise the Lord!

I am attaching a photo of Beth being able to touch Katie for just a few seconds. This will give you some indication of the level of care she is requiring.Thank you so much for your thoughts and prayers. The many e-mails and phone calls have truely been a blessing. Beth has commented about how much of a response we gave gotten from the Triton family. Your outpouring of love has truely touched both of us, and your continued prayers are helping our little girl. Keep them coming.

Day 1--April 10, 2009

2009-05-11T06:46:00.009-04:00

As fate would have it, our little girl decided to come into this world a little late. The kind folks at Rex Hospital in Raleigh, NC helped us right along with a little induction. This progressed normally and the baby was born at 12:59 pm on Thursday. I guess that would be yesterday as it is now 12:45 am. Our precious little angel is less than 12 hours old and I write this from the Duke Intensive care Nursery in Durham, NC. Beth is still at Rex. As Katie was late she had had a bowel movement while still in utero. This meconium causes some concern for the health of the baby specifically if she inhales it when she first cries. As she was born the doctors were quick to use suction in order to pull as much of the offending mater from her mouth and nose as possible before she took her first breath. Upon a cursory examination she was deemed to be in very good health. Beth came through with flying colors. She is set to be released tomorrow. Very shortly after she was born,Katie was taken to the nursery for observation. Her blood oxygen levels were dropping and they thought that it was due to some of this fluid in her lungs. Further examination discovered what appeared to be a collapsed lung and the possible solutions were explained. About 20 minutes later the Dr came back and said that the x-ray had revealed that she had a Congenital Diaphragmatic Hernia. In short, her liver and a portion of her intestines are located where her right lung should be. The decision was made to life flight her to Duke Medical center for emergency surgery. After a frantic packing, many tears, hugging, and farewells I made the trek to Duke. Currently Katie is being stabilized to determine when she can be operated on. Drs here say she must have the operation within the next couple of days. No one has made any indication otherwise that this not a very serious situation. She will have a surgery to remove the organs from their present location and return them to their normal position. This will enable Drs to then repair the hole in her diaphragm and assess the condition of her right lung. Currently there is concern as to it's presence and or development. Once this has been completed we then have to teach her to eat ever so slowly to see if there are concerns with her bowels which have been "kinked" for so long. If these have grown shut, a second operation may be necessary to cut out the damaged areas and reconnect the healthy sections. Recovery and hospitalization have been optimistically presented as about three weeks, but more realistically as five to six weeks. Now she is on a ventilator, with several other lines and catheters in place.I asked the most obvious questions. I was told that the success rate for this procedure was about 75% at Duke. Once she is released after the next month or so, she will be very susceptible to colds and respiratory problems. We will have to turn into something I am not......a germaphobe. I was told by the Dr that if he had to pick a baby with her condition to survive that he would pick her. Of 7 drugs normally administered to children with this condition, Katie only requires one. We were told that she has a huge head start over most other cases. She is a fighter. Not to be misunderstood, we have a VERY sick little girl, with a LONG LONG row to hoe. However we are supremely confident in the Lord's ability to use these fine physicians at Duke to help make her whole and better. It would be easy to be resentful, angry, or bitter, but we have found a peace that only God can give. I have no way of understanding why the Lord chose to send her to us in this fashion. If it is to make me desire to have a closer walk with him so be it. If her condition can be used to plant the seed of salvation into an otherwise lost soul, so-be-it. I thank God for his blessings and Mercy. There are many families who may never know the love of a child, and after a stroll through the Intensive Care Nursery, I can attest that there are families with children far worse off than Katie. Again, the Cole family requests prayer for one of our own. I have attached some photos of little Katie before she was attached to the myriad of monitors and tubing. I may send some of those out later, but for now please appreciate her cuteness as a normal new born.