Tuesday, June 2, 2009


(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.


  1. From Care Pages Site:

    Posted Jun 5, 2009 2:53pm
    by Sara Cooper

    Hello again...
    I wanted you to know that I added a link to your blog on MY blog. I have a lot of people in my little world who will pray for you and beautiful Bella...If you Don't want it on there, let me know, and I will remove it.
    Posted Jun 5, 2009 8:19am
    by terri wiener

    wow.....This site is the first thing I look for in the morning. Thank you for sharing this with us. I am amazed and humbled by this journey you all are on. I am so happy you can take your sweet Bella home. Love, Terri
    Posted Jun 4, 2009 1:32am
    by gia venturi

    Surrounding Bella and your family with healing white light. My thoughts of peace and healing are with you! I'd send strength, but I know you have it in droves. Don't forget to breathe.
    Posted Jun 4, 2009 12:57am
    by Treisa Cassens

    Tim and Ang- this is a wonderful news and shows so much progress (especially at a week old) AWESOME! My mom brought news to her meditation group and they "held her together in their thoughts and toward the healing light" so there is another 15+ people praying for you all. I figure every bit helps! Also her best friend's son-in-law starts his new job on Monday ... at CHOC. So sending friendly faces and reinforcements! Love to you all!
    Posted Jun 3, 2009 9:09pm
    by Kristine Gorman

    So glad to hear how she is improving! Love the new pix :)

    Kristine Gorman
    Posted Jun 3, 2009 8:34pm
    by JoAnne Thomas

    Hi Everyone, we are so pleased to hear good news. You are all in our prayers. Love Ron and JoAnne Thomas
    Posted Jun 3, 2009 6:56pm
    by Shane Hamilton

    We are all thinking about you and your beautiful family! Take care and congrats on your amazing little girl!
    Posted Jun 3, 2009 5:17pm
    by Sheila Marchetta

    So glad to hear the wonderful improvements.
    Add the prayer community everyone I talk to, plus the CASA, and the Daily Word's Silent Unity. See you tomorrow! Love to all.

  2. More from Care Pages:

    Posted Jun 3, 2009 3:17pm
    by Lacy Jane Vanderboom

    glad to hear all the good news guys!!!
    Will focus as requested.
    Love you!
    Posted Jun 3, 2009 9:39am
    by MB Young

    That's all good! I've been in such prayer for all of you after Mass each morning and the children have entrusted your intentions to all their devotions throughout the day. We await our Lord's Holy Will for you all and pray for the strength to carry out His Plan.
    Posted Jun 3, 2009 8:49am
    by Karen Skipper

    Wonderful report! You all continue to be in our prayers. Karen Skipper
    Posted Jun 3, 2009 8:19am
    by terri wiener

    I'm sending warm,loving thoughts towards Bella and the family. It sounds absolutely astounding what is happening there.
    Love, Terri
    Posted Jun 3, 2009 7:47am
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    Intense prayers continuing, we see her completely healed! So many highlights to be thankful for in her recovery today! Stay strong!
    Michael & Robin Setto
    Posted Jun 3, 2009 6:22am
    by Margaret Tanner

    Dear Ang, Tim and Ali,
    Bella is beautiful! It's wonderful to hear about her progress and to learn about the music therapy - what a terrific idea! Sounds like she's as capable as her mom - she's going to do great! I add my thoughts and prayers for her healing and for yours, Ang. Warmest wishes,
    Margaret Tanner
    Posted Jun 3, 2009 2:21am
    by Rick Sherman

    Tim, I'm sending you, Angelique, and Bella much love and light. My prayers are with you all.


    Rick S