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!
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.