Friday, November 28, 2008

more of the same

Tyler's bili levels were 17.2 and 18.7 on her last two labs. So, we're still in pretty much the same place. When we originally got to the NICU on Tuesday night and she dropped her levels from a 31 to a 20 overnight we were thinking that we were going home today (Friday). Well, today will come and go and Tyler will be no closer to going home. So here's the tentative plan for Tyler- they turned off her IV and are seeing if she can remain at an 18 without it. Then they will slowly wean her off the phototherapy one light at a time. Best case scenario is that she stays at an 18 (or goes lower) during all of this. The neonatalogist said that he would be comfortable sending her home at an 18 if she can stay there without the lights. We would just have to take her in for blood work frequently. It will still take time to wean her off the lights and wait on labs to see how she does (they're only taking labs every 12 hours at this point). If her levels go up, the lights go back on and we're back to square one.

We are obviously so frustrated at this point because there is no explanation for Tyler's inability to get rid of the bilirubin. The doctor keeps saying how unique her case is. I can't even explain how hard it is to watch your baby lie in a hospital bed with her eyes covered almost 24 hours of the day for days on end. It doesn't feel healthy for a 2 week old to be in such isolation. I hate that she can't at least look around and see the world around her. I worry that a week of living in the dark with little touch and holding will have a long term negative effect on Tyler. I hate missing out on precious days of her life, but I am so thankful that she will be ok and will come home eventually. I may never put her down!

2 comments:

Erica Parsons said...

Sarah, I am so sorry to read about Tyler's jaundice. I know your family is incomplete without her at home. My family and I will be praying for you and your family, that you will all be healthy and hopefully together very soon. Take care...
Erica

gretchen owens said...

praying for you guys!