Slow Progress

We had a scare about two weeks ago. Kai was acting sickly, so we had the nurse practitioner do some tests on him. She was informing James and I that RSV, a virus that is potentially deadly to premature infants, has been going around in the community. In adults and children, is shows as a mild cold, but for preemies, infants with chronic lung disease, and infants with heart disease (all of which Kai has) it can be devastating. Needless to say, James and I were upset by such news. We went home that night in disbelief that shit like this could still happen after he was doing so well, after talk of him returning home.

They started him on antibiotics immediately and awaited the test results. His CRP test came back showing that he had an inflammation somewhere, we had to find out where. After about 48 hours we got the news that none of the cultures had grown, which was a good sign. Then, after about 96 hours, nothing had grown. We still don't know what was wrong with him, but he got better within about two days of feeling sick and continued to trek along.

I have been staying at the hospital a lot, trying desperately to get him home soon. It seems all my hard work paid off. Kai is scheduled to come home on Friday, assuming there are no changes to his condition. I met with his nurse yesterday to discuss his meal plan. Preemies have a hard time gaining adequate weight, especially when complicated by chronic lung disease. This is due to the amount of energy that is required for him to breathe vs a term baby. According to his meal plan, he has to take four bottles a day, not something an aspiring breast feeding mom wants to hear, but he need a fortifier that will help him gain weight. In addition, he will be needed a fat supplement, such as coconut oil or palm oil. Both are high in saturated fats, which are easy to digest and lauric acid, which is present in high concentrations in breast milk. The nurse was explaining that most mothers of such an early preemie don't make it to discharge able to breast feed their babies, and being that this was a rare case, she had to do a lot of research. Luckily. I am also taking a random nutrition class and I plan to ask my professor about supplementation suggestions. I would much rather give Kai an animal based oil, but coconut will suffice for now.

Yesterday, I also went crib shopping with my mother. Walmart gave us the run around and we ended up visiting all three stores in Gainesville unintentionally. But it worked out for the better because at store number three, I found a great deal. So, aside from a mattress, He is all ready to come home! Friday can't come soon enough...

And then there was light...

On December 25, 2009, nearly two months after he was born, I got to hold my son for the first time. Merry Christmas to me! It was a magical milestone. We were beginning to see that we may get to raise our son after all. He did very well that day, and for every holding to follow. We had to start with Kangaroo holding, and weren't able to hold him like a baby for another week or two.

On January 18th they finally extubated him. He looked so different! James and I walked into his room that morning, knowing that they removed his tube, and yet we still walked in and walked back out thinking he wasn't our baby. He went from a reddish pink color, to looking like a white baby. After a few days though, his ethnicity was restored. About a week later I got to breast feed him for the first time. He did really well with that, too. He went straight for it, just like a big boy. We are currently working on the feeding thing today. There is still some room for improvement.

Another week later, he was moved from the NICU3 to the NICU2. I can't believe he has made it so far... we never expected this, and with such encouraging results.

That brings us about up to speed. There were, of course, some details that got left out, but I think the general experience has been laid out before you. He is doing really well now. He is breast feeding and bottle feeding almost every feed and is breathing very well with minimal support. His pulmonary hypertension is resolving and the experimental treatment for his eyes seems to have worked. The only thing keeping him in the hospital is feeding. He needs to be able to eat 100% via bottle or breast.
Last night I slept at the hospital so that I could breast feed him all night, however, I never woke up. So, this morning I felt really bad when I arrived at his bedside and had failed to come and work with him. I will have to sleep here again, and try again. On the plus side, the opthamologist checked on his ROP today and said that his eyes looked great! I am loving all the good news. Its about damn time.

They are thinking he will have to go home with a monitor and on oxygen, but they are talking about him coming home. We have been waiting for this for so long, and now its tangible.