Sunday, June 7, 2009

Last Night in the NICU

Big Shout out to our dear friend Jim Thomas whose birthday was Friday! Our bad, Jim!

In 24 hours, God willing, I'll be typing in this same position while Bella lies peacefully in her cradle at the foot of the bed I'm typing on.

In 8 hours, I'll be prepping for our final in-hospital wound care dressing change session with Betty our PT who is coming BRIGHT AND EARLY AT 8 AM to Bella's room. (Why Betty? That is just m-e-a-n. j/k we love you)

The fatigue is running deep, and anxiety high. The last two days have been exhausting, more so mentally and emotionally. Transitioning so quickly into EB wound care specialists has gone well, but has required every ounce of concentration and focus...two things we've been running in short supply of since the 27th. We realized that because of Bella's rare condition, we're going to know more about how to dress and care for her wounds than a nurse assigned to drop in each day. This has already become the case at CHOC. This is a little scary because, on the one hand, we expect of ourselves to be our daughter's first line of care, but learning about skin healing/infections, and types of dressings, how to apply what's a lot when it's NOT your kid. I'll spare you the long tedious order of operations, but each limb has 8-10 steps depending on severity (left leg is still the doozy). However, each day, we troubleshoot and brain storm and learn a little more about how to do better for Bella. Wound care is the most painful part of this disease. EB patients liken their blisters and lesions to 3rd degree burns, so what we are concentrating on now is how to minimize the time the wound is exposed to air. That reduces pain and risk of infection, the two big hurdles this condition throws at you.

Having said all that, Ang and I completed all Bella's dressing changes in 2 hours flat today! Big improvement from 3.5 hours yesterday.

Katie, the PT today, said that CHLA (Children's Hospital Los Angeles) used to have an outpatient EB wound care clinic. She gave me the name of the PT Director there to follow up with to see if they still have that service. CHLA isn't anywhere close to where we want to be schlepping for any reason, but in case something gets too intense for us to handle with home care nurses, it will be nice to know a clinic specializing in this is only 50 miles away. (Let's hope they still have it!)

Bella is feeding like a champ with the Haberman Bottle still although we will have to fortify her breast milk with protein and extra supplements. That's cool. Mommy and daddy take supplements and protein shakes, why not our daughter?

Unfortunately, this afternoon, Bella started to display some unusual behavior that alarmed our nurse. She was twitching uncontrollably during sleep, and her heart rate spiked over 200 beats per minute during her afternoon bottle. She was also really upset whenever awake in between sleeps. She turned all sorts of dark red and purple today during her screaming fits. It was enough to completely break your heart. The resident on hand didn't think it was another seizure because seizures rarely happen in your sleep and the twitching needs to be more rhythmic and steady than Bella's was. No one had an answer for her heart rate. I walked in to the hospital confident of her medical condition, but nervous about her wound care. I walked out of the hospital nervous about her medical condition and confident (mostly) about her wound care. The switch was off-putting, and I am definitely scared about how tomorrow is going to go. Thank you for all your thoughts, wishes and prayers. All of us really need them at this crucial juncture.

Meanwhile, thanks goes out to so many for so much. I just don't have any more gas in the tank tonight.

The request:

Keep creating 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 just went away."

I hold on to this vision with a tired and fragile grip. So many have learned so much in such a short time since Bella's arrival. We pray that once she is home where she belongs, she sheds this disorder and blossoms into a fully functioning, inspirational child and adult capable of all the things her big sister is capable of.

Transformation happens.

Please keep the messages and comments on the photos coming, and please visit to download "Bella's Song" as well as several others to help support Bella. (edit- the songs can also be purchased above! Thank you :) )

We love you all.


  1. From Care Pages Site:

    Posted Jun 9, 2009 12:23am
    by Megan McGuire

    Dear Tim & Ang,
    I hope this note finds you at home (& that it doesn't get lost in the transfer - hope it's not too late!) after a joyous homecoming. Thank you for opening your hearts and souls to all of us by sharing these updates on Bella's care and condition. As difficult as it may be for you, it is so nice for me to read about all our prayers manifesting. Thank you also for reminding all of us, including yourselves, to take nothing for granted and cherish every minute we have with those we love. I know that a year from now when your family is attending the NICU reunion with Ali and your healthy, almost-toddler Bella you will be translating her healing story to other parents and caregivers. Back to the present, please try to remain confident and strong as you care for Bella at home. You can do it! We wish more than anything we could be there to help, though. We love you and are so grateful for the loving and supportive community you have down there.
    Dear Ali,
    Congratulations on your potty party! I loved your cake and you looked like the most beautiful princess I have ever seen. Your little sister is so lucky to have such a great role model! Love to you from John, Megan, Marissa and Brady.
    Posted Jun 8, 2009 7:53pm
    by Russ Baldwin

    Anabella is amazing, and so are her parents. Our prayers and love with continue to be with your family.
    Russ & Jen Baldwin
    Posted Jun 8, 2009 3:42pm
    by Kristine Gorman

    Hooray! So happy to see this wonderful news.

    Kristine Gorman
    Posted Jun 8, 2009 3:28pm
    by Jim Hornaday

    I'm projecting strength, concentration, clarity and love upon you all.
    Posted Jun 8, 2009 2:46pm
    by Becky Stone

    Kudos on becoming Anabella's experts! My prayers are with you, and I'm just steps away tonight.
    God's love and peace,
    Posted Jun 8, 2009 11:23am
    by Doug Gleason

    We continue to pray and we are continuously amazed by the blessings and by your strength as a family. We love you! Welcome home Bella!
    The Gleason's
    Posted Jun 8, 2009 11:12am
    by Angela Ostermann

    Repeating this has always helped me.. I hope sharing it with you will help you too.. repeat until you feel at peace. "I put this situation into the hands of infinate love and wisdom, let the devine idea now come to pass." We continue to pray for each and every one of you.
    All our love,
    The Ostermann's

  2. More from Care Pages:

    Posted Jun 8, 2009 11:09am
    by Kelli Kelly

    We love you guys! Welcome home Bella.
    Posted Jun 8, 2009 10:46am
    by Jennifer Higgins

    I know how scary it can be when you take your little bundle of joy home after a hospitalization. My daughter was in the hospital for 8 days at CHOC for a respiratory infection at one month old and while we felt safe in the hospital taking her home scared us to pieces, but prayer kept us calm and at peace. Although Bella's condition is much different I can see how the power of prayer has helped you and will continue to comfort you through this process. You are all doing such a wonderful job!
    Posted Jun 8, 2009 10:12am
    by Barbara Reuer

    P.S. Remember to "breathe deeply"... blr
    Posted Jun 8, 2009 10:11am
    by Barbara Reuer

    My thoughts and prayers continue to be with you all.

    Posted Jun 8, 2009 9:30am
    by MB Young

    Life with all children is never a sprint, it's a marathon. Pace yourselves. We're with you!
    Posted Jun 8, 2009 9:05am
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    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 just went away." .... stay strong Tim and Angelique - Bella is so strong too! Our intense prayers continue for all of you.
    Michael and Robin Setto
    Posted Jun 8, 2009 8:43am
    by Barbara Dailey

    we're still with you - and pray for renewed energy and strength for you and Ang - always remember that God doesn't take us to places and give us challenges that we cannot withhis help handle - Love Walt and Barb