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.
We are Andy, Beth, Michael, and Katie Cole. We started blogging in the spring of 2009 as we dealt with the life-threatening birth defect of our daughter, who had a Congenital Diaphragmatic Hernia. But now she is now a happy and healthy one year old and we want to share more of our life than just "Katie's Story." We emerged from this most difficult time with a stronger marriage, a stronger family, and a stronger faith. Please join us as we live our thankful life!
A congenital diaphragmatic hernia, or CDH, is a birth defect that occurs in approximately 1 in 2500 live births. Half of those babies will NOT survive. Babies with CDH have a diaphram that was not formed correctly and this hole allows the abdominal structures such as the liver, spleen, and intestines to migrate up into the chest cavity. Because this usually happens so early in gestation (usually at 8-12 weeks), it interferes with the normal growth of the heart and lungs. Most of the time the lung on the affected side ends up being only a fraction of a normal sized lung at birth. This doesn't usually cause problems until the baby is born when they need those lungs to breath air for the first time! At birth, this is a life-threatening emergency that will require surgery to repair as soon as the baby is stable enough. Following surgery, there is most often a long, slooooowww recovery process.