Wednesday, June 3, 2009

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.


  1. From Care Pages Site:

    Posted Jun 4, 2009 10:37pm
    by Conde Rogers

    Thank you so much for sharing all that you are with us. I am so inspired by who you are being. I am creating and praying for miracles for your little angel Bella. I think of you three throughout the day and check in for the updates each day. Much love to you!!
    Conde & Don Rogers
    Posted Jun 4, 2009 6:08pm
    by Lisa Wilson

    Angelique, Tim & Ali. We have prayers chains is several states praying for you and little Bella. Your friends across the country are wrapping you in love and support. Lisa WIlson
    Posted Jun 4, 2009 4:17pm
    by Rachel Kupper

    God bless your family! You are in my prayers!
    Much Love,
    Rachel - Music T co-intern :)
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    Posted Jun 4, 2009 2:37pm
    by Jennifer Thomas

    Thank you Tim for your honest and heartfelt updates. I think eveyone on this site appreciates how you are allowing us a small glimpse of what you and Ang are going through right now. I'll say it again, you are an amazing father, husband and friend.
    I think positive thoughts of Bella all day long and I know she is going to come out of this with the best possible diagnosis.
    Whatever you guys need Jim and I are here for you...We love you all.
    Posted Jun 4, 2009 2:23pm
    by wendy burkhard

    Tim & Ang, we are holding the space for Bella's wellness to be delivered with grace and ease. You are with us as partners as we courageously become bigger human beings out of our experiences with our children. We just got home from 6 days at Phx Childrens Hospital. My lastest status on facebook clarifies it well. We love you, Wendy & Jerry (& Harmony too!)
    Posted Jun 4, 2009 1:11pm
    by Carolyn Rhinehart


    You are Grandma's special little girl. I love you so very much. Ali and I will see you later.

    Love and kisses,

  2. More from Care Pages:

    Posted Jun 4, 2009 12:05pm
    by douglas garrett

    Tim, when I read about you playing music in the main pod and the couple with the premie I thought of how God is working through you and your family in a very challenging situation to touch the lives of others. Here's a quote I received in my email this morning - "I don't know what your destiny will be, but one thing I know: the only ones among you who will be really happy are those who will have sought and found how to serve."
    - Albert Schweitzer

    Blessings and prayers from all your friends, Douglas
    Posted Jun 4, 2009 11:09am
    by Lacy Jane Vanderboom

    Praying and asking for a miracle each day.
    We love you guys.
    Posted Jun 4, 2009 10:57am
    by Doug Gleason

    Baby Bella you are so dear
    In God's hands He holds you near
    Healing, soothing, giving strength
    His power and grace knows no length
    Amazing love and your parents devotion
    Will put these great miracles in motion
    Posted Jun 4, 2009 10:41am
    by Jennifer Higgins

    Keeping Bella and her family in our prayers
    Posted Jun 4, 2009 10:00am
    by Barbara Dailey

    we also have no problem praying for a miracle and are doing so. Our love for you and your little family grows every day- Walt and Barb
    Posted Jun 4, 2009 9:39am
    by Angela Ostermann

    You both are doing such a great job with this, stay strong, keep the faith, God will grant your miracle.. He has already given you two, Ali and Bella. You all continue to be in our prayers! With Love, The Ostermann's PS.. not sure what your arrangements are with help at home.. would like to send a maid over or maybe dinner at the hospital.. send an email with details if you are not too overwhelmed, we just want to help, not hinder. xoxo
    Posted Jun 4, 2009 9:07am
    by Cindy Barr

    "Through it all, through it all, I've learned to trust in Jesus, I've learned to trust in God. Through it all, through it all, I've learned to depend upon his word."

    Baby Bella IS a miracle. Her little life is affecting everyone in a miraculous way! Through your strong example of faith in God, you too are a blessing and inspiration to others. I believe God has put Angel-Bella here for a reason -- to show us all that the power of prayer is miraculous, and that through it all, God is good--all the time. Know that you are not alone, as there are many, many Prayer Warriers praying for the complete healing of Baby Bella. Amen.
    Cindy & Brian
    Posted Jun 4, 2009 9:01am
    by Bernadette Slavin

    Hi Angelique: I asked Bob G how you were and he shared this website with me. Bella and all the family will be in my're so right...prayers can work wonders. If there is anything I can do, please let me know and of course don't feel you must respond to my have enough on your mind. I was so happy to hear about the music and the healing, peaceful vibe that is being sent out. God does work mysteriously. With love, Bernadette
    Posted Jun 4, 2009 8:23am
    by Elaine Quick

    We are all praying for God to heal Bella and to give all of you the strength to get through this. We love you, Thomas & Elaine
    Posted Jun 4, 2009 8:14am
    by Sara Cooper

    amazing...simply amazing.
    We will be praying for the best results...
    and if you need a place for Ali to play while you are at CHOC, please email us :)
    Molly would love a playdate!

    Sara, Ken, Jack, and Molly
    Posted Jun 4, 2009 6:49am
    by Marie Bresnahan

    I believe in miracles and I and putting in my requests for Bella. I am sending many prayers from Brooklyn.

    Peace and love,
    Marie "Mimi" Bresnahan
    Posted Jun 4, 2009 5:59am

    Tim and Ang: For a spiritual energy boost consider reading the 8th Chapter of Romans, especially verse 28: And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Your family is in our prayers. Your dedication and courage is awe-inspiring. The Goldens