Thank You for Your Messages and Prayers

Hahaha...one minute off last night's post. Creatures of habit, OR WHAT??? :)

Hello all you beautiful people out there generous enough in your life to take the time to log in and read and follow and pray for us on our journey. You are the breath of life and strength keeping us moving through each day. Without you, this would all be going terribly different. Ang and I read each and every one of your posts at least once at day (once at night and if we have time, once in the morning). While we don't respond to them, please know that every one of you that has posted and visited (just seeing your name on the visitor list makes a difference!...but go ahead and post anyway! ;)) has been thanked by us. THANK YOU ALL.

Well, the day has arrived, and nearly gone. The biopsy was this morning. Armed with information for EBnurse.org, we strode into the NICU this morning with new confidence, clarity, and purpose. We were grateful to finally be pushed into reading about EB; that website is AMAZING. We learned so many useful tips that made a difference in Bella's care TODAY.

We actually told the staff a thing or two today! It was awesome because Dr. Metz was there to confirm what we were telling the staff. Here's the deal:

Dr. Metz felt Betty's wound care has been FANTASTIC and was impressed.

EB babies can deal with blisters in their mouth and still bottle feed.

Sooo....the big question was, "Was Bella averse to bottle feeding?" which the answer was, "No, she took it like a champ and was PISSED it was taken away and another tube stuck down her throat."

Sit down if your standing....

10 minutes later, Dr. Metz says to me in the nurses station, "They want to send [Bella] home tomorrow."

I just stared at her like a deer in headlights. Tomorrow?

Yeah, that's right, tomorrow, folks.

Now, it may be "as soon as" tomorrow, IF they can get the discharge planning complete by then, which anyone who knows hospitals knows is a daunting task to coordinate case managers home health, equipment, all within 24 hours. More than likely it will be early next week since the weekend will be a big waste of time since none of those people will be working.

BUT...

Bella is medically cleared to come home tomorrow.

She can feed orally on her own and wound care can be done at home. The risk of infection, believe it or not, is much lower at home than in an ICU...so they want her out of there for her own sake ASAP.

It gets better.

Because she is a medical marvel and everyone wants a pice of this story, the company that manufactures the wound care products Betty is using IS COMING TO THE HOSPITAL TOMORROW to find out more about what breakthroughs Betty caused and how to potentially re-engineer some of their existing products based on how she has modified them. They are bringing BOXES of supplies for her/our use.

But wait, there is more.

The PR team at CHOC got wind of this story a few days ago and has been trying to contact Ang and I about doing a story on Bella and her music, but GOD LOVE or social worker for keeping them at bay. today, she finally told us they would like to meet with us, and we agreed. The power of music therapy and prayer needs to be read about as often and by as many as possible.

Your prayers are being answered. I say it that way specifically because Ang and I are CLEAR that the power YOU all are generating GREATLY exceeds what we have been able to do on our own. We acknowledge and own that we have stood and loved and nurtured and prayed and played over our daughter to the best of our ability, and that first line of support has been vital and crucial to her progress, AND without YOU...our army of positivity, love, compassion, generosity, and support...we couldn't have been so strong ourselves being the parents we've always hoped we could be.

Thank you.

Thank you.

Thank you.

Now, to the bad...

One of the staff, bless her heart, didn't realize yesterday when she hastily taped the feeding tube BACK IN, that you cannot use adhesives of any kind on an EB baby. So today, as I held Bella, I watched from point blank range the nurse pull that tape off bella's cheek, along with a roughly one inch long by half inch wide chunk of her skin.

Man, that made us so mad. Mad at the nurse for making a knee-jerk reaction while we were at lunch to reinstitute that feeding tube. Mad at the staff for not having read enough on EB to have known not to use ANY adhesives. Mad at the system for giving us a new nurse every day, so that every day, it was her first time ever dealing with EB, so the collective growth curve was far lower than it could have been. And, mad at ourselves for not being brave enough to read up on EB sooner.

What can you do? I don't blame anyone for it. Her skin will heal as it is doing so well. This case is so rare, everyone is learning as they go, including us...but man, in the moment...grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr...

Bella's face today is covered in blisters from her rooting yesterday after getting a bottle, then getting it taken away for 24 hours. She was trying to eat her hands, suck her thumb, self soothe orally all night and her face llos the way it does today because of this trial and error method that could have been avoided if our dermatologist had seen our baby 7 DAYS AGO when she was first called.

Thanks for enduring this rant. I know that we "practice" medicine, heck, I "practice" music therapy. I know that this case is SUPER RARE...but knowing doesn't stop feeling.

So, the long and the sort of it is that her skin heals well, but blisters so easily that the slightest friction to her skin causes it to separate. She IS a miracle, you're right! AND, the miracle isn't finished manifesting.

The Request:

Bella's quality of life if her current level of severity persists will be debilitating. There are versions of EB that have "gone away" as children grow older. Here is the story I am envisioning, and I humbly request you do the same:

One day, years from now, Bella will say,"Yeah, when I was born, I had this rare skin condition, but somehow, it just went away when I came home from the hospital." She will speak of it with no conscious connection to her own words. It will be as if she is reciting an event from her history book.

However, this event will have left in its wake...faith strengthened in many all across the country, faith even restored in a few, and music, oh sweet healing music therapy for thousands of infants at CHOC over the years to come. Questions were already asked in meetings at CHOC this week as to why there is no music therapy in the NICU...they have a part time MT on the units...why not the NICU???

It all started with a song. Bella's song. Written by her mommy and daddy and recorded by her daddy in the midst of being totally sick. It was sung and played to her while in the womb for months, it resonated in the O.R. as she was delivered, and a tender, softer lullaby version floated through a NICU and helped heal the patients, their families, and the staff.

Oh, see the ripples in the pond you cause? YOUR PRAYERS gave strength for that third vital chapter to be written.

Hopefully, by the end of the day tomorrow, a new blogspot will be finished. My dear friend Jim Hornaday and his girlfriend Jody Gnant have been working hard on creating a public blog where you can go read about Bella, listen to her music, and if you feel like it, contributing to her care by downloading her song as well as a couple of others that are appropriate.

The site is www.careforanabella.com

you can also go to www.myspace.com/timringgold and hear and purchase "Bella's Song" there as well.

During the biopsy today, Bella started to have a meltdown. Before the third lyric of her song was out of my mouth, ( I was playing my guitar for her during the procedure), she stopped crying and looked up toward my direction of the room. She knows her song, and I think she likes it.

Finally, I just say publicly THANK YOU to my amazing wife Angelique and my beautiful daughter Alessandra. First and foremost, they the angels that keep me afloat each day. Thank you all for reading all of these words. I hope they inspire you as much as they do me.

Talk to you tomorrow.

So Much for Trying to Get to Bed Early...

So much for trying to get to bed early...

First off, Happy Birthday, Zoe! Our close friends' daughter (and one of Ali's bestest friends) turns 4 today! YAY!

We're still up because we are preparing for tomorrow morning. Tomorrow morning, we FINALLY meet the Pediatric Dermatologist, Dr. Brandie Metz from UCI Medical Center nearby. She is consulting with everyone at CHOC tomorrow morning as well as doing the very specific test to confirm diagnosis and determine subtype. There are staff literally lining up to pepper Dr. Metz with questions regarding Bella's care. The Director of Nursing, Linda Glenn, told me today that maybe one patient A YEAR comes through CHOC with this diagnosis...

...what diagnosis do you ask?

Well, we have been witholding this information to save you all from reading unnecessary information on the web about a very complex and rare disorder. Some of you (you know who you are) went out on the web anyway...I can see that it is very tempting, but I implore you to resist the temptation to try to peg this one.

Here's what we know:

Bella's symptoms present like Epidermolysis Bullosa, or EB. There are 4 types of EB, with multiple subtypes. Each subtype can vary in severity widely. It takes this very specific biopsy tomorrow to determine the type and subtype. EB affects 1 in 50,000. The biopsy will be sent to Stanford University (literally the nearest facility that can read this type of test) and we go from there.

For example, Bella presents with symptoms that both support AND confound a diagnosis of 2 of the 4 types. Even within one of the types, she presents like two subtypes...

So, more will be revealed tomorrow. Now, back to today's Summary:

The Good:

We walked into Bella's room and there was no feeding tube in her nose!

Mommy and Daddy both got to bottle feed Bella this morning!

Wound care looked GREAT after yesterday's breakthrough. Great job, Betty!

Bella was awake and alert during the day now that she is off morphine!

Daddy met with the Director of Nursing who thanked me for transforming the vibe in her NICU through the music I played in there since we got there last Wednesday. I asked her permission to continue to play in the main pod that connects three 8-bed units while Bella recovers in her new private room. She couldn't believe it. She gave me the green light and sent out a communique to all staff as a heads up that I've got her blessing.

When Daddy returned to the main pod, I started playing for a couple and their preemie. After talking to each other for a little while, we shared about how powerful prayer is. When I confided that I am conflicted about asking God for a miracle, they came to Bella's room and prayed over her and...prayed for a miracle. How do you ask for God's Will and a miracle at the same time? They seemed to have that figured out and shared with us.

The Bad:

Because EB is so rare, most of the tx team has never treated a patient with it. We are stumbling through the treatment a little. They used a special bottle on Bella, but didn't know exactly how to use it. The development team was not too happy about that.

After the bottle feeds today, Bella developed new blisters in her mouth and was really agitated for the rest of the day. Her feeding tube was then put back in. No more bottles.

Bella didn't get enough pain relief before her bath/wound care. She screamed and cried all the way through. That sucked.

The request:

There is a subtype of EB where patients claim to "grow out of it" by the time they reach grade school. Through the power of prayer, could she perhaps grow out of it sooner? Her skin is sooo sensitive. We really need a miracle. Please create in your thoughts, prayers, intentions, and meditation that her skin heals and stays healed forever, that no new blisters appear, and that this condition clears up for good.

God heals so many so often in so many ways and so many places. We humbly ask that this child is granted this same grace beginning today.

Thank you to all who share in this sacred moment.

We are blessed by your love and generosity.

Good night, be well, we'll talk to you tomorrow.

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?