Thursday, June 4, 2009

Thank You for Your Messages and Prayers 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, 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.


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 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 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

you can also go to 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.


  1. From Care Pages:

    Posted Jun 7, 2009 8:42am
    by Jan Pflaum

    Ang and Tim, I want to say that you both are such incredible parents, I watched you both with your little angels and it was so amazing.
    I think of Bella and say prayers for her everyday, and for you her parents to have the strength and courage to carry on. I do believe you are both very strong and with the grace of God you will do just great. As far as Bella is concerned she will be just fine, she seems so healthy and strong but most of all she will be a fighter. I worry more about you three than I do her. I know about the goodness and grace of God, He has been so good to me by giving me your Uncle Bill, I have been blessed. So in essence, God will watch over your precious family and you will be just fine, because you have been blessed, some days may not feel that way, but you have been. Love and kisses to Ale and Bella and to you their parents. Jan and Uncle Bill.
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    Posted Jun 5, 2009 7:08pm
    by Jennifer Thomas

    Be sure to check the posts at the Blogger site too, there is already one from "some random person", as she put it. Your beautiful family is touching many, many people. Awesome work by Jim and Jody!
    Posted Jun 5, 2009 3:39pm
    by Ann Dieringer

    Hello Ringgold Family - What an amazing report; God does answer our prayers. Hugs, Ann D
    Posted Jun 5, 2009 3:07pm

  2. More From Care Pages:

    Posted Jun 5, 2009 3:07pm
    by Denise Dew

    Oh HEAVENLY FATHER, PRAISES OF JOY AND THANKS & GLORY go to YOU for hearing the prayers, cries and pleas from those of us who know and love the Ringgolds. Thank You Father for your Tender Mercies and your Glories Miracles you display through this precious angel Anabella.
    Thank You Father for Timothy and his most beautiful gift of music and for Angelique and her endurance as mother to your little angels. May they continue to recieve the blessings that You surely have for them to recieve and for us to all see and behold.
    Posted Jun 5, 2009 2:12pm
    by Lacy Jane Vanderboom

    I am so happy for you and your girls my brother!!!!
    I just allow the tears of joy to flow as I read your inspiring notation and imagine the smiles on your faces as you get the good news. I will not comment on the issues with the procedures...
    Rather I choose to honor you and your ability to allow them to flow like and out of your present moment!
    Once and your family are an inspiration and constant reminder that we all benefit from the power of prayer and positivity.
    I love you all...more and more!!!
    God he has and will continue...
    Posted Jun 5, 2009 12:46pm
    by Treisa Cassens

    I went from being happy to sad to crying ... man Tim you guys are amazing, so super strong. We are blessed to have you as friends and yes we will keep Bella and ALL of you in our thoughts. I want Zoe and Ali and Bella to have tea parties in a couple of years.
    Posted Jun 5, 2009 11:57am
    by Jennifer Higgins

    It breaks my heart to see Bella's blisters, so I can only imagine how you are feeling as parents. You are an inspiration to other parents and I send my prayers to all of you.
    Posted Jun 5, 2009 11:30am
    by Barbara Dailey

    e just cannot believe all we are reading - Our prayers for your strength, dignity, grace, and love are apparently very effective as you display all - We pray of course every day for little Bella's healing - and from a further away objective place, you have once again confirmed my very deep belief inthe power of music and there can never be too much music in the world - thank you Tim for the gift of your music to Walt and please know that it played a part in the success of his health problems - Love you two and your two - Walt and Barb
    Posted Jun 5, 2009 11:19am
    by Conde Rogers

    Sending you sooooooooooooo much love. I am surrounding you with love and healing miracles.

    Posted Jun 5, 2009 10:43am
    by Russ Baldwin

    We will hold Bella up in prayer and praise God for her strength and beauty, and we will ask that she grow out of EB. We will continue to pray for your strength and peace. We will ask that God's will be done with your music and that it will help all those others in need of comfort and healing. You are a beautiful family.
    Posted Jun 5, 2009 10:39am
    by Steve Williams

    Accepted with joy and inspiration.
    Posted Jun 5, 2009 10:11am
    by Marie Bresnahan

    You remain in my thoughts and prayes all teh way from brooklyn. I am so inspired by you and yoru story. Tim, your gift of music is so inspiring. Your family is lucky to have you there by their side. I remember so well when you sang the song "The Wind Beneath my Wings" at my Dad's funeral. I am not sure if I ever told you how very grateful I was for that. You are truly the Wind Beneath the Wings of your darling girls. Keep the faith and keep up the good work!
    Mimi Bresnahan
    Posted Jun 5, 2009 9:53am
    by Sara Cooper

    Oh My Goodness...
    I need to re-apply my makeup!
    I just cried and cried as I read your email.
    It's just amazing...
    Posted Jun 5, 2009 8:22am
    by Angela Ostermann

    We are so excited for you guys! Bella is coming home! YEAH!!! I hope the nursery is ready! :) I hope big sis is doing good through all of this too.. she is probably all prepared to be a great helper! She SO deserves a trip to Disney once Bella is well enough :)... we continue to pray each day!