Thanks so much for everyone's kind words and prayers. You guys are making me cry! I just got back from UT with Lily and she is resting comfortably although she does have periods where she won't stop crying so I am trying to control her pain as best as possible without giving her so much that she vomits.
Her hydrocephalus is worse than we thought and further tests revealed that she is blind in her right eye. She may regain her vision in that eye or may become completely blind in both eyes, they just don't know. Her prognosis is "guarded" and when I asked what that meant, all they would tell me is that it is not good. I'm starting to come to terms with this and I've decided just to be thankful for every day that I get to spend with my beautiful little girl. I just pray that she remains a happy little girl and doesn't become completely blind.
They told me that I can only give her the L/D for now but so far she refuses to eat so I may have to give her some sugar water to keep her glucose level up (no nutrical become of the protein). They also gave me lactulose syrup and milk thistle.
Thanks again guys for everything. Especially those who told me their stories, it gives me some hope
