Thursday, June 11, 2009

Update 0601009 "25:55"

Did anyone get that?

Yup. It's 1:55. Ang is feeding Bella her bottle and we are rocking out to Mozart's Rondo Alla Turca on piano. Yeah, I know I used Mozart and ricking in the same sentence. That's what sleep depravation does to you.

The Good:

Bella's first pediatrician appointment went well in that she was 55-75% in each developmental area.

We started putting cotton balls in Bella's palms which is much healthier for her hands and little fingers to develop...keeps the natural shape of her grip while encased in tubing and socks.

Dressing changes look better and better each day...mommy and daddy are learning! It still took 2 houts though.

We tried a pacifier late the night before and it really helped with diaper changes.

The Bad:

Bella formed a giant new blister on her right elbow. The night before she literally beat the night before's blisters right off her face, so yesterday we tried to swaddle her. However, she is freakishly strong, a wiggle worm, and suffering from reflux on top of everything else (common in EB babies) so she spent most of last night wriggling and breaking free of her swaddle. We think the pressure of trying to pull her arm out caused the blister. It was little in the morning, but it almost wrapped around the back of her arm from one side to the other by 4pm. We had to lance it and drain it, otherwise it would just continue to spread. The way EB blisters work is that when a blister forms, it can just spread and spread because the pressure from the fluid building inside just continues to separate the adjacent skin. That doesn't happen to us; our blisters are restricted to their respective trauma site, because the healthy skin all around is bound down by that missing protein in EB.

Bella's reflux has made her REALLY irritable when awake (which is all night) She gurgles and hiccups in her cradle despite the 2" lift we gave her. Will try a higher incline later. Diaper changes at night have been wrestling matches which have also caused some new blistering. This evening, after the nurse left, while I was trying to change her diaper, she pulled her left foot COMPLETELY out of its dressing boot, which took three people to put on. I had to run next door to get our neighbor Becky, the OC public Nurse, to help feed Bella a bottle while we redressed the foot on the changing table.

Becky was reading my post from yesterday when I knocked at her door. Providence

Anyhow, we are tinkering with her feeding schedule, type of formula that is being used as a protein supplement for wound healing, EVERYTHING possible to try to make her comfortable. Oh, and diapers only get changed on a FULL tummy till Bella mellows out a little.

There will be good days and bad days, and there will be elements of good days in bad ones and vice versa.

Today, Ang had a good checkup and so did Bella. Today, hundreds of people prayed in their own way. for our daughter. Today, God placed my neighbor right where she needed to be.

Thank you all for visiting. It helps us soooo much. More than you know.

Please hold this vision with me: "One day Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away."

Download Bella's music!



  1. From Care Pages Site:

    Posted Jun 13, 2009 11:56am
    by Dave Funnell

    Dear Tim and Ang, our prayers are with all of you as we lift up our request to the Lord for his healing gift.
    Jeanne & Dave Funnell
    Posted Jun 11, 2009 4:02pm
    by Michael Cassens

    Hi Guys, I got the hospital grade pacifiers for you. Let me know when would be a good time to bring them over. I also have pictures from Zoe's birthday party for you (as well as the now old champions league final) to brighten the day. There are some good shots of A. Also, I posted Bella's story on my school facebook site so if you start seeing messages from people you don't know, it may be some of my students (including some of the Psi Beta kids you inspired with your visit, Tim!)

    Thinking healthy and happy thoughts and sending beams of white healing light to you all!

    All our love,
    Mike, Treisa, and Zoe
    Posted Jun 11, 2009 1:26pm
    by Judith Pinkerton

    Tim and Ang,
    I read your regular postings to stay in the loop so that my prayers are current for your needs. I accept that your gifts of love, presence and steadfastedness with Bella and Ali will continue to grow daily into life experienced as easy, peace and joy-filled.
    Love to you all,
    Posted Jun 11, 2009 12:40pm
    by Angela Ostermann

    Hi!.. I had a few ideas that I was not sure if you had thought of or not.. to prevent friction in areas that may be easily irritated (elbows or knees) maybe terry wristbands? I looked online for baby sized ones and found these cute pink ones but I don't know if they are small enough...

    Also.. to keep all her medical supplies handy, we used this.. it worked well and we have been able to reuse it to store toys (as you will for Bella!)
    Hope this helps!
    Posted Jun 11, 2009 11:36am
    by Lynne Boschee

    Sending you love and miracles. Jack is now joining us in praying for Bella and her "oowies." Love you guys.
    Posted Jun 11, 2009 11:35am
    by Chelsea Davis

    Still praying. I'll drop by the lasagna on Monday.:) We're behind you & want to support your family in any way that we can.

    Chelsea & Tim Davis

  2. More from Care Pages:

    Posted Jun 11, 2009 10:53am
    by MB Young

    Got that vision memorized now! One day at a time, you two, and don't forget to sleep!
    Posted Jun 11, 2009 10:50am
    by Jan Pflaum

    Oh my gosh, you both are incredible, I just want to let you know that Bill and I will be happy to come down and take care of your babies while you both go out for a nice lunch together or dinner. You need some time for just the two of you. Bella and her darling sister will be just fine with us. I can do this, and Bill will be very supportive............ Think about it and let us know. Our prayers are continuing. Much love to all of you.......Jan and Bill
    Posted Jun 11, 2009 10:47am
    by Conde Rogers

    Sending you love and healing and miracles - complete and full miracles.

    Posted Jun 11, 2009 10:37am
    by Barbara Dailey

    you are creative, you are innovative, you are strong, you are able to ask for help when needed - you are determined - I don't think that little Bella and Little Ali could ask for better parents, guided always by the love and direction of god - Good will come to you - Love Walt and Barb
    Posted Jun 11, 2009 9:22am
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    The family is a strong unit. Yours is very strong! We are definitely holding Bella's vision with all of you. Our intense prayers continue.
    Michael and Robin Setto
    Posted Jun 11, 2009 8:28am
    by terri wiener

    I am holding the vision of Bella.
    Am thinking of you all.
    Posted Jun 11, 2009 8:23am
    by Angela Ostermann

    I am so sorry to hear that Bella is so uncomfortable! The reflux is killer, my nephew had that really bad and they ended up having to change to a soy based diet. I know Bella is on a special diet but I am not sure if that can be integrated. Also, something that really helped, they let him sleep in his car seat (buckled in placed in crib) so that he was inclined enough.. not sure if you have tried that yet. Keep up the excellent work Mom and Dad! We are all rootin for you! I am so glad the neighbor is there to help, wish it was me! We think of and pray for you all constantly! I know that one day Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away." xoxo, Angela