Wednesday, May 20, 2009

Day 40--May 19, 2009

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!

2 comments:

  1. Hey there Andy and Beth! We're soooooooooo happy for you guys! I hope you're enjoying your first night home with Ms. Katie and Michael together! I hate I didn't get to wish you guys off today. My mom said I just missed you. We moved into the 'penthouse' after you guys left! :) Keep in touch: thetailoredtot@yahoo.com

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  2. I was so glad to find your blog on the PRF blog. We have been wondering how things were going with another fellow Parker House baby. I can't wait to read over your entire story. Congrats on Katie kickin some CDH bootie :). Enjoy your beautiful little one. Kristen - mother to Bodee (Parker House boy #3)

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