A bit of an update.... Lila has been off oxygen for over two days now with really strong saturation levels! Yeah! This is a nice little victory for us. She is doing really well in that area. Now if we could just get that girl to eat (I wish that was my problem in life) The doctors think that she got a bit of a bug and has just not felt up to eating. Her white blood cell count was just a little high, like someone fighting a cold, but they are back to normal now after a round of antibiotics.
I have felt more at peace these past few days. As someone who has taken care of a child with cystic fibrosis for eight years I was definitely thinking the worst, especially with her being on oxygen for so long. But after Sara (Lila's pediatrician, and Williams mom) talked to the NICU doctors and has read her tests and scans and felt really good about the situation I have felt better. The doctors really feel that Lila was misdated and that she was born at 36 weeks. That alone could have landed her in the NICU to work on feeding and breathing issues but combined with the miconium intake and getting a bit of a bug it is no surprise that she has been there that long. Sara says that those little 36 weekers are so frustrating because they look so normal but they take a while to eat on their own and feed on their own, and that they can do really well for a few days and then crash and not want to do anything. I think that we pushed Lila really hard in the beginning and that she just needs time. Frustrating!! But it is nice to have more peace. Believe me I have begged for every test and lab that there is to see if something else is going on and I really think that she just is not feeling well. Now that we are off IV's and oxygen we just need to work on eating. Which today she breast fed for the first time and really did amazing! I thought that option was done for us but she really took off and did well.
So unfortunately it is just a waiting game. But I am happy that she is getting the care she needs.