Providence

(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".

The good:

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 bad:

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.

The request:

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.

No coincidences.

Visiting and Contact Information

At this time, please do not call; I don't have the time or energy to respond to all the requests for information or updates. While we appreciate the support, phone calls actually cause stress and prevent me from attending to my wife and daughter.

Please email us at timringgold [at] gmail dot com. I promise that I will call you when we need help. We have called on many so far for various reasons, and are grateful to have all the help.

Please understand that this experience is far beyond anything we have ever faced and is requiring more energy to cope with than we can explain. Thank you for honoring this request.

The Little Things...

Thank you all sooooo much. Each night, we read your posts and comments and the pain goes away.

The good:

Docs d/c'd Bella's pulsoximeter today. That's a device that measures oxygenation of blood. Bella's blood O2 saturation has been solid enough to no longer need to put this tether on her. Her skin is so sensitive that this device is causing more problems than solving, so they gave it the boot.

Bella is gaining weight. She is up to 8 pounds, 4 ounces and still pooping away the day and night. Her digestive system is tolerating full feeds now.

I (Daddy) got to hold Bella today for the first time since she was born 5 days ago.

She was so close to me, I could FEEL her healing in my arms. Being so close to all your prayers, I had the strength to see her totally healed from this condition. I was afraid to ask for so much being so cut off from her, but holding her in my arms today, I felt your prayers in action. Thank you for that moment. It was the first moment of peace in 5 days.

Mommy gets one $5 meal voucher per day for the cafeteria and we as parents don't have to pay parking! Thank God for the little things.

I met Eric Mammen at last! Eric is the Music Therapist at CHOC. Eric and I have a similar career journey and are both Chapman grads, married, 30 something with 2 kids. We also live within a mile of each other in Orange! It was nice to connect with a colleague and find a new friend in all this.

Ali, Mommy & Anabella

Mommy had her Assessment at the Mother-Baby Assessment Center today. Her nurse complimented her on her progress, stating that she has rarely seen a patient in such good shape so soon after a C-Section. Go mommy! Rally on!

The bad:

Bella is still in an isolette while we are comfy at home. I am dealing with some serious guilt being at home while she is alone. I am reminded that we need to care for our selves and our other daughter in order to have strength to care for her....but sometimes that just sounds hollow.

Still, no biopsy. grrr...

Bella still has blisters on her tongue and roof of her mouth (ouch!) so she can't eat orally. We are unsure whether they were a one-time event or a chronic condition. Once they subside, we'll try feeding orally again. If they reappear, we're gonna have to consider a feeing tube inserted permanently into her abdomen.

Outside of that, there was NO NEW BAD NEWS ABOUT BELLA'S CONDITION TODAY! Thank you for all your thoughts and prayers that made that possible. Ang and I confided in each other today that we were feeling guilty that we don't have the strength to pray much right now, but we are comforted that we are surrounded by literally hundreds of friends and family who ARE praying hard for her right now. We are reminded of the "Footprints in the Sand" poem, and we genuinely feel carried, and we know Bella is carried by the collective circle of your prayers and God's love.

The whole family

Last night, when I hit my knees by my bedside for the first time since this all began, I found myself filled with gratitude, and started thanking God for all the blessings in our life right now. I find it hard to believe that's what was present, but at the end of the day, the only things that remain are the good things, and what could be better than that?

Your posts really boost our spirits. Thank you!!

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.

Our first update

Thank you for visiting.

The good:

No return of seizure activity.

No blisters from being taken out of isolette and "held' by mommy for 2 hours yesterday. YAY!

Mommy holding Anabella for the first time.

Dr. Metz (pediatric dermatologist -UCI Medical Center) has seen photos of Bella and is now in the consultation loop.

We trying again this afternoon for Bella to be held by mommy.

The Bad:

Bella was still too agitated at 22:00 from afternoon activity to be held again last night.

Bella has to be medicated/sedated with morphine to prevent her from moving around too much and exacerbating her existing wounds and blisters. This leaves her too sedated to try to feed orally.

Tx team is considering feeding tube, but her condition may affect her esophagus and a tube going down it may trigger blisters in her esophagus.

Other news:

Angelique is recovering like a CHAMP!!! Doing really well. She is truly rallying so she can spend as much time at CHOC with Bella as her body will allow being less than 3 days post-op. She reads bed time stories and poems to Bella so that Bella can hear mommy's voice.

Bella listening to Mommy's voice

Ang will be discharged from St. Joseph's tomorrow.

Tim is practicing NICU music therapy on his daughter. He completed his NICU MT Certification training in Florida in February having no idea he would need to use it on his then in-utero daughter 3 months later. The staff in the NICU, from the residents, fellows, nurses, and even head of neonatologists are responding extremely positively to overall effect on NICU environment, morale of staff, and other families present. Silver lining?

Daddy's first music therapy patient

Ali stayed dry for her fifth night in a row last night, locking in a celebration party for her in the near future. She paints and colors pictures for her baby sister and visits her daily. Grandma is staying with her at her home (thank you Grandma!)

Request:

Thank you for visiting this site. This is going to be the clearing house for updates and information on Bella. Words cannot describe the intensity of this experience, and while the intention is appreciated, phone calls are not welcomed at this time. Please send emails or post to the site. If we need something, TRUST US, we will call you. Otherwise, please send positive thoughts, affirmations, and most of all, PRAYERS that Bella somehow can come through this beginning unscathed and perhaps even live a normal life.

We love you, we know you love us, and appreciate your care very much. We are blessed beyond belief to have so much love and support in our life that we even need to set this website up. It is a "problem" we are grateful to have!

Blessings, Tim & Ang