We went to visit yesterday afternoon and I got to hold her while she had her feeding.
She's had horrible diarrhea leading to a sore bottom- something they are trying to remedy with Nystatin and SUPER Butt Paste. Yep, if you thought Butt Paste was good stuff, this is supposed to be even better.
I am so grateful for those times that I get to see her and hold her because they are so very rare. It's hard to be so far away...it was nice to be there at the hospital because of the ease of walking down to the NICU when I wanted to. Now I have to get back to real life, other kids and responsibilities and lots of sleeping lately. I am so tired and so sore yet...but I know you don't want to hear about me and really I am handling things. My body temp is all messed up- last night I was just shaking because I was so cold and then later I'd break out in a sweat. Not so fun. But, I am okay. I think it's all hormone-related as my body tries to regulate itself back to it's "normal" self.
Lily has jaundice as well...they figured she'd eventually have to go under the bili lights simply because she has been SO red. She had her little sunglasses on yesterday when I got there and I could already see where the light was making a difference.
Last night the doctor decided to suspend her tube feedings and they reinserted a new IV for glucose water which Lily handled like a champ. The nurse said she didn't even cry. Her vitals continue to be stable and hopefully this rash will clear up soon. Having her on the IV has helped to decrease the diarrhea so they are going to run some labs and then increase the feedings as tolerated and see how things go.
I am grateful for nurses who are taking good care of Lily...everyone has been wonderful.
We so appreciate all of the prayers in our behalf.