First 24 hours at home...done...still a roller coaster, but with moments of almost normal serenity!
Our in home nurse was great today. Turns out she'll be our nurse all week, and if not, only one more nurse will come by. I thought it would be like the NICU where Bella saw a different nurse every day.
Today was nice at times to be so peaceful, but Bella beat herself up pretty good with her own two fists today and her face has taken a beating. We also found out from the EB nurse educator that reflux is common in EB, so we installed a 2" elevation for Bella's head in her cradle to hopefully help with that. She just seems to have two main states...sleeping and crying. Normal right, but the crying is like turning purple screaming and almost inconsolable. Ali wasn't like that so it wore Ang and I out. Also the nurse had to leave to go to her other job in the middle of the wound care. Ang and I thought we could do the right leg and hands by ourselves, but you just need 6 hands to manage it and it took us pretty close to 2 hours to finish up. THANK GOD Nanny and Manny stuck around this afternoon; they helped care for Ali wonderfully during our first in home wound care session.
Gang, we thank you all for the continued prayer and support. We are pretty worn out right now, and really are carried by you.
Tomorrow: the first trip out to the pediatrician. She's already due for her 2 week check up...never mind the fits 12 days were in a hospital. Please pray that Bella tolerates the checkup well.
Please hold with me this vision again:
"One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition. But when they brought me home from the hospital, it went away."
All things are possible through God.
Good night, keep the posts coming. Your messages keep us going.
We love you all.