The good:
We are home from St. Joe's. (my bed feels really good underneath me as I type after 4 nights on a pullout chair!)
Strike a pose. Leg warmers are BACK.
Bella is tolerating feeding through her feeding tube and pooping like a champ.
Mommy got to hold her yesterday and today.
Bella opened her eyes and looked at mommy while being held for the first time today.
Anabella's beautiful eyes
The Bad:
We came home without Bella. That was rough. Seeing the empty car seat and having to unpack her coming home outfit and clothes...breaking points. Bella doesn't feel real...even when we're with her, we can't touch her. They keep her sedated so she won't move around too much and cause new blisters or exacerbate existing ones.
Doctors seem in no hurry to do the biopsy...short term care isn't going to be impacted by results...only her long term prognosis...which is what we'd like a glimpse of. The spectrum of this disorder is so wide...from superficial to fatal. The flipside is that it forces us to stay present and savor every moment we have and every little sound Bella makes.
Ali showing her little sister her new dolly
Aunt Dina bought her.
Summary:
The Tx team is trying to keep Bella's wounds clean and healing and infection free. Some blistering is getting better, some is getting worse. Both hands are now bandaged due to blistering on the outside of her fingers.
We're home and we're exhausted. We have to pace ourselves; this is most likely a marathon, not a sprint.
From Care Pages:
ReplyDeletePosted Jun 3, 2009 4:09pm
by Bruce Swerdfeger
Angelique and Tim,
My thoughts and prayers go out to you and Anabella. She is a beautiful baby. I pray for you peace and comfort and a full recovery for Anabella.
Bruce Swerdfeger
Posted Jun 3, 2009 3:14pm
by Christa Lorenz
Hi Tim and Family,
Just a note to let you know you are in my thoughts! Your baby is beautiful and I will pray for her full recovery!
-Christa Lorenz
Posted Jun 2, 2009 12:15am
by Brian Barr
Hi Folks,
Just got in from out of town and got the news. We wish for you peace and strength and the warmth of the Lord's healing embrace. Anything we can do to help, please know all you need do is ask. Also know we will be praying for you and precious Bella in earnest.
With all our Love,
The Barrs
Posted Jun 1, 2009 11:44pm
by sam b
Tim: I am praying for you, Angie, Bella and all involved.
Sam B.
Posted Jun 1, 2009 9:06pm
by Russ Baldwin
We will pray for the biopsy results to come back quickly and favorable. We will continue to pray for Bella's healing and strength and peace for your family. We will also pray that an update comes soon about the three of you bringing Bella home.
Love and Prayers
Russ & Jen
Posted Jun 1, 2009 7:00pm
by terri wiener
I am so sorry for everything you and your family are going through.
I keep you in my thoughts and prayers as I see these wonderful pictures and read your updates. I continue to pray for Bella and the family.
Love, Terri
Posted Jun 1, 2009 5:02pm
by Kristine Gorman
Hello Angelique, Tim, Ali & Bella:
So sorry that you are going through such an challenging time. You are all in my thoughts, and I look forward to reading your updates each day :)
Kristine G
Posted Jun 1, 2009 4:51pm
by Stacey Krsulic
Hi Angelique, Ali, Tim and sweet Bella,
What a beautiful little girl and wonderful family. I too can't begin to say I understand what you're going through, but I do know how hard it is to come home without a little one. She will be there with you soon - hang on to that. What wonderful parents (and sister) you are - the voice recording, the music, the dolly - everything Bella needs to see what a wonderful family was chosen for her. Hugs, prayers and positive thoughts coming your way.
Stacey K
Posted Jun 1, 2009 3:40pm
by Jeff Cogan
Hope the little munchkin will be ok. I'm sure she will.
Best thoughts to you guys.
-Jeff Cogan
Posted Jun 1, 2009 2:48pm
by Sara Cooper
Dear Ringgold Family,
I cannot pretend to know how you are feeling.
BUT, I can say that you and Bella are getting the best care at CHOC. My friend's baby was born at 25 weeks, weighing just over 1 pound. I visited them often, and was amazed at the love in that building.
Your daughter is beautiful :)
We live, literally a 5 minute walk from CHOC.
If you would like to leave Ali with us while you have a visit, please call us. We have lots of toys, and would love to have her...
We are usually home by 4:00/4:30...Molly is up till 9:00ish, so it doesn't matter how late you need to leave her.
Our home # 714-634-9424 my cell 949-322-3287.
We are praying for all of you...
Sara and Ken Cooper
Posted Jun 1, 2009 2:28pm
by Olivia Swedberg
Dear Ringgold Family,
What great pictures of Bella- she is as beautiful as her name! As you support each other through this challenging time, know that you have warm and caring thoughts coming to you from so many others who are praying for you.
Thinking of you,
Olivia
From Care Pages:
ReplyDeletePosted Jun 1, 2009 1:27pm
by Nancy Sandoval
Angelique, Tim, Ali and Bella
We are thinking of all of you and sending our thoughts and prayers to you as you travel this difficult journey. Your faith is strong and God's goodness and strength is beyond words. We pray God's healing hands will gently lay on beautiful baby Bella. The entire staff at CHOC is amazing and Bella could not be in better medical care. We are here to pray for you and support you in any way we can.
Blessings,
The Sandovals
Posted Jun 1, 2009 8:12am
by MB Young
Love all the pictures - keep the news coming. We're in such prayer for you all!
Mary
Posted Jun 1, 2009 7:32am
by Denise Dew
Dear Father in Heaven, I have two very gracious and Grateful friends who are going through that closeness with you that they may or may not understand what they're going through right now. YOU have drawn them nearer to you LORD through the birth of their dear little Anabella. Father I just pray that You give them the strength, resilience and courage they will need to weather this mini-storm of hospitals, and waiting and doctors and nurses doing whatever and all it takes to make little Anabella strong and free from her present condition. Father You can and DO work miracles. I pray that the Ringgolds get to see how powerful you are through the rapid healing of their little babygirl.
Thank YOU Father, through YOU all things are accomplished great and small.
Amen
Posted Jun 1, 2009 7:22am
by Dennis Jarosh
Thanks for sharing your families progress thru CarePages. Bella's in our thoughts and prayers. Let us know if there is any additional support you might need.