September 28, 2009

As we have learned, after almost 13 weeks in the NICU, there are always ups and downs. Gabe's chest tubes have been putting out only about 10cc's a day for the last few days. Last night, however, they started putting out quite a bit more. I believe one put out something like 70 and the other around 55. This was very disappointing for us to hear because we thought he might finally be starting to dry up. Along with the extra fluid, his numbers weren't quite as stable, yesterday and today, as they have been over the last week or so. His Alubmin levels and IGG levels were low, so he received FFP in hopes of bringing those levels back up. There were a couple other levels that were lower then they should be, but for the life of me, I cannot remember what they are. Dr "B" dropped by to say hello and said it's just going to take "time." We have seen many ups and downs over the last three months, and know that Dr "B" is right, it's just so hard sometimes. More than anything in the world, we just want to bring our little boy home!

Along with his FFP, Gabe also had an abdominal ultrasound, and a full body skeletal x-ray today. Needless to say, it was a very busy morning for Bubba and Nurse "L." The abdomenal ultrasound will be repeated every two weeks to keep an eye on G's liver and the masses. GI wants to see if the masses are growing, and if so, at what rate. The hope is of course that they are not growing. There is a possability they could shrink, so fingers crossed this is the course they choose to take. The full body skeletal x-ray was done to get a good look at all of G's bones and how they are growing. Any time a genetic disease/syndrome is suspected, one of these is done. Gabe would have had this done many weeks ago, however it's only been in the last few weeks that he has been able to be turned and manipulated, and there is much of that involved in this x-ray. I think they took about 19 x-rays of him today. If any of these show abnormal growth/development of bones, it could be another piece to the puzzle, and possibly help with a diagnosis. Gabe is going to be a glow-in-the-dark kid by the time he leaves the NICU. I guess it could be cool party trick in college.

Despite everything going on, Gabe still looks great and is continuing to shrink. The smaller he gets the more aware I become of just how small he should have been when he was born at only 32 weeks. For the most part, he has been pretty mellow and enjoys spending long periods of time looking around. He has been kicking his legs, wiggling his feet and toes, and I actually saw him move is left arm down a bit today. I was really excited to see this because it gives us hope he will not spend the rest of his life in the muslce man pose. G is beginning to have better control of his eyes now, and we rarely see them go different directions anymore. That was always a little freaky. Today they weaned a bit on one of his sedation drips and on his vent. Both very exciting things.

Regarding the possible Noonan Syndrome diagnosis; blood was drawn today to be sent off for genetics testing. It could take approximately 6 weeks to get the results. Waiting...waiting...waiting...so much waiting....