(We are watching Will Ferrell on Men vs. Wild w/ Bear Grylls as I type. Thank God for laughter therapy.)
THANK YOU THANK YOU THANK YOU all for your visits and posts. We are overwhelmed by the love and support coming from far and near.
Check out some new pics...
Our PT Betty stayed up last night brainstorming a new way to bandage Bella. The result? A private room with bath and a lot of teamwork. Thank you, Betty.
Beautiful Bella with her new bandages covering some gnarly blisters, but also a lot of healthy new skin on her left leg. Take the good with the bad.
Bella bundled in mommy's arms, new bandages, and her "lovie".
Bella was moved into a private room in the NICU. This gave the Tx team the space to do a full bath and would care dressing, as well as keep her wounds away from the open air and germs of all the other staff and visitors.
They took out the IV line that was going into Bella's umbilical cord today. She is taking her feeds so well that they don't need to feed her supplementally and they want to get her off morphine. That is GREAT because that IV line was a major risk for infection. If she needs any pain meds, they can give it through her feeding tube.
Our minister Dennis short came today and brought us lunch and together with our nurse, we all prayed over Bella this morning.
The Speech/Language Therapist (sorry, forgot her name) fed Bella via syringe today to see if her mouth could handle feeding. Bella has two blisters on her tongue and a broken blister on the roof of her mouth. Luckily, after the feeding, the blisters didn't get any worse.
The Physical Therapist, Betty, had a breakthrough today in Bella's wound care. Until today, they have been trying to do her wound care through the twin doors of her isolette and only one person would attempt the wound changing at a time. With Bella squirming around and covered in aquaphor (a vaseline type lubricant to protect her from friction and new blisters), her dressings have been falling off repeatedly. Betty told us that she went home bummed out and told her husband she felt like she failed at work. So she stayed up late looking up dressing strategies and came in with a whole new plan today, hence the new room. She worked on creating new "mitts" of dressings to cover Bella's hands and feet, while Karen the nurse held Bella steady in the bath. Ang cut strips of dressing for Betty and I played a slow, arpeggio rhythm and sang Bella her birth song. It was a beautiful combination of teamwork and care. Bella had her first spa day!
While holding Bella today, she woke up and looked into my eyes for about 20 minutes. It was the first time I felt like we really met. I was a little intimidated by her intense eyes. I have been looking mostly at her eyelids since she was born.
The skin on Bella's left shin has healed MIRACULOUSLY. I couldn't believe my eyes when I saw it. It was the first time I saw her left shin since she was born without any skin on her lower left leg. Well, all I can say is that it has almost completely regrown! KEEP THE PRAYERS COMING!!!! THEY ARE WORKING!
The biopsy is FINALLY scheduled for this Thursday.
The reason for the ONE WEEK DELAY on the biopsy? The Pediatric Dermatologist is from UCI Medical Center, not CHOC, and CHOC didn't give her clearance to come into the NICU to do this biopsy. Apparently, it is a very technical biopsy that not just any Doc can do. Luckily, our doctor happens to be the Medical Director, so he went to the administration and got her the clearance she needs. Red tape....happens.
On a side note, the staff and families of the other patients are a little upset Bella has been moved into a private room. They kept coming to Bella's door today to say how much they missed the music today. I told the nurse that I would be willing to play for 30 minutes a day in the main room, so she left a message for the NICU Director of Nursing, so we'll see.
Focus your prayers on healing Bella's mouth. Those blisters need to go away and not come back, otherwise we may have to insert a permanent feeding tube into Bella's abdomen. Bella is just too beautiful for a feeding tube.
Finally, let us focus our thoughts, intentions, and prayers on a biopsy that holds a miraculous result. There are three types of this skin disorder, let's create that she has the mildest version. Could this disorder heal completely or move into remission? Let Bella surprise and delight us all with a miraculous recovery.
Your prayers, thoughts, and intentions carry us through each day. We watch Bella grow and heal every day, and we know it is the communion of your love and God's love and power that keep this journey unfolding in miraculous ways every day.
Tune in tomorrow for more (mostly) good news. Some friends are working on something exciting to help even more people help out.
By the way, the name of the street we turn on to pull into the CHOC parking lot? PROVIDENCE STREET.
Anabella Ringgold was born on May 27, 2009 with a rare skin disease called Epidermolysis Bullosa, or EB. She had the rarest form, called Recessive Dystrophic, or RDEB for short. A single gene in her body responsible for making the anchor that hold her skin to her body was defective. This caused blisters and wounds to occur all over her body, including her mouth and entire GI tract. Any kind of friction, rubbing, bumping caused blisters to form, or it caused her skin to shear clean off. Life expectancy is under 20 years due to risk of malnutrition, infection, or squamous cell carcinoma. Although pain and discomfort was constant, Bella remained bright and cheerful, bless her heart. Though currently there is no cure for EB, Bella took place in a clinical trial at the U. of Minnesota where through Bone Marrow Transplantation, she grew her sister's skin on her body over time. Unfortunately, she died from complications of transplant on October 11, 2010. This is her story, and our story of how we cope as a family with the journey we are on together.