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
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.