Welcome Kayla, you have definitely found the right place, and I'm sure you won't feel so all alone. There are plenty here who have been where you are--check out Westonsmom's blog--she went through alot when he was born--almost all of us did, in one way or the other--my granddaughter was not dx untill she was a year old...and I am one of the "lucky" ones--she is "mild" right now ( a ticking time bomb in other words...)
You should try starting a blog...
Are you stilll in the hospital?