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.
From Care Pages Site:
ReplyDeletePosted Jun 10, 2009 9:21pm
by Michael Cassens
I think about you guys everyday, and send as much positive light that I am able to conjure to all of you. Also, Tim, we got your message and will get you some hospital grade pacifiers right away. Love to you all, Mike
Posted Jun 10, 2009 1:59pm
by Lynne Boschee
Tim, Ang, Ali and Bella -- Just seeing your news and updates and getting present to the journey you've been on that past few weeks. We love you, and we know that Bella will tell her friends, "Yeah, when I was born, I had this rare skin condition. But when they brought me home from the hospital, it went away." We are holding that and we are sending you prayers and all our love.
Posted Jun 10, 2009 10:34am
by John Vande Bossche
Tim and Angelina,
Mary and I keep Little Bella in our prayers. Certainly as you say all things are possible through God. Your spirit is fantastic.
John and Mary
Posted Jun 10, 2009 10:10am
by Conde Rogers
I am with you each and every step of the way. I am praying for miracles for you all every day. Love to you. Conde
Posted Jun 10, 2009 10:10am
by Ron Gray
Tim/Angelina: You are right. All things are possible through God. He'll give you enough strength to endure this trial. And, no doubt your vision of the future is indeed accurate. Ron
Posted Jun 10, 2009 9:54am
by Cindy Barr
"I believe for every drop of rain that falls, a flower grows. I believe that somewhere in the darkest night, a candle glows. Everytime I hear a newborn baby cry, or touch a leaf, or see the sky, then I know why I believe."
I too believe Bella is here for a reason - to one day 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." - Know that you are loved and that the prayer warriers are in constant prayer for Angel-Bella's full recovery, and strength for her parents and big sister.
We are witnessing a miracle in progress! Amen!
Cindy Barr
Posted Jun 10, 2009 8:49am
by Angela Ostermann
I believe with all of my heart that 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."
I know it is hard, but you have it in you. God has chosen you to care for this special angel for a reason. She needs the best of you, and I know that you are pouring your heart and soul into it. You are amazing parents, keep up the great work. We continue to pray for your precious angel to heal, for you and Ang to cope, and for beautiful Ali to understand.
Xoxo,
The Ostermann's
Posted Jun 10, 2009 8:24am
by Robin Setto
Dear Tim, Angelique, Ali and Bella,
Stay strong, believe in one another. Intense prayers continue. "Yeah, when I was born, I had this rare skin condition. But when they brought me home from the hospital, it went away."
Love,
Michael and Robin Setto
Posted Jun 10, 2009 8:16am
by Sara Cooper
i admire you...and she will also look back and realize what an awesome family she has...what a lucky little girl...
we are still open for some playdate time if you need Ali to have a little break :)
Posted Jun 10, 2009 7:54am
by Trazona Montague
you guys hang in there. You are doing fantastic! Not many people would handle this as graciously and positively. Go team Ringgold!!!!
Posted Jun 10, 2009 6:29am
by Olivia Swedberg
Dear Ringgold Family,
I read the updates on Bella first thing each morning, East Coast time, which is usually shortly after you all have gone to bed. So even when you're (hopefully?) sleeping, my prayers for you continue. Tim and Ang, you are amazing parents!
Take Care,
Olivia
Posted Jun 10, 2009 3:25am
by Jim Hornaday
Ang, Tim, Ali, & Bella -
Bless you all with continued love, strength, commitment, and healing. There are many steps in a marathon. Keep pace. You are making remarkable progress through this journey. My thoughts are with you. I share your vision. You are healing!
Love,
Jim