Thursday, August 5, 2010

August 5: Day +34

A rare glimpse at Bella's face!

Greetings from our little cocoon!

I call it that because something amazing is happening here.

I haven't commented too much on Bella's skin yet, because frankly we've had more pressing matters on our hands for a month straight. Right now, while her kidneys still don't work, at least her V.O.D. appears to be improving, and her blood pressure has been GREAT all day, so with that, I call our attention to her skin at last.

In the EB community, EB kids are often called "Butterfly Children" because their skin is as fragile as a butterfly's wing. Well, we are transforming the meaning of Bella as butterfly child. You may now call her a butterfly child because the metamorphosis of her skin is no less dramatic. Today we had a dressing change and a dialysis circuit change. Every time I unwrap Bella's left foot, I hold my breath, because we use a very large dressing over it to protect it. So, I don't ever know what I am going to find underneath. Sometimes, Bella's foot will just blow up into one, giant blister for no apparent reason, so it's always a mystery. She was fluid up +900 3 days ago, and I was worried it would translate into a blister as her foot swelled around its dressing. When I looked today, I saw this...

Compared to right around transplant day...

Well, we're really not sure what is going on. It seems like Bella is systematically shedding all her skin that covered EB wounds. Dr. Wagner told us that the new cells seem to home in on where there are wounds, as if there is a signal being sent by them somehow. So that really nice coloring just above her toes... when I touch it, it still feels like it is all going to shed off eventually. However, it feels like there is a healthy foundation growing underneath it. This is the complete opposite of how this area usually feels. Usually, even if the skin is completely closed, it feels almost dead by comparison. There used to be no "plumpness' to the skin. Now, it feels supple UNDERNEATH the skin itself. Here's another example, check out the top of her right hand today...

versus that same day around transplant...

See how thin that skin is in the above picture? It looks like it is barely stretched over her hand. That same spot now has such think, supple skin growing in underneath the chunky dead skin molting off. Also, the natural color of the skin is returning to areas that just never got any better than that deep pink tinge you see above. The top of her hand ballooned into a giant blister on her second day of life from flailing in her isolette, and has never looked that color since the night she was born. No joke. Also, we can't explain why there is more milia (little white dots around the edfes of wounds) than before, but the wounds are still healing more completely than ever before despite it so... we'll take it.

Today, during dressing changes, I can't tell you how much dead skin I massaged off Bella... particularly her hands. It's as if she is wearing a bicycling glove on each hand... you know, the ones that don't have fingers, and end right at the heel of the palm...

Anyway, the skin on the fingers has been molting off for a few days now, and today I went to work on them for a while, and the wrists started in on the same thing, so I just kept working on them, and the skin just kept falling off. Again, it is weird, and we don't really understand the process, but it is truly a bit magical to watch.

It is refreshing to focus on this today, as this was the purpose of this whole journey. We had healthy lungs, liver, and kidneys when we got here. This past month of focusing primarily on them has been so tough because it was all collateral damage. However, all the while, Ali's cells were at work growing inside Bella, laying the groundwork for the masterpiece which has been hence underway and now visible to the naked eye. I remember thinking about pregnancy several weeks ago, and how the most dramatic details take place before the naked eye can see any evidence of the miracle at work. What week do you start showing when you're preggers? Well, we're showing!

We also found out today that Ali's cells, as of Day +28, are 100% engrafted! There are two types of cells, fast growth and slow growth, and both cells are 100% engrafted!


THAT is the cup of water we have been waiting for the most on this most arduous marathon.

Under the hood, here are the numbers...

Weight: 11.4 (from just a few minutes ago woohoo! We haven't seen 11.ANYTHING in a while)
I/O: -248 (Yay! include what she evaporates daily (200mL/day) and thats almost half a kilo!)
WBC: 10.7 (best to date! YAY!)
ANC: 7.2 (2nd best to date! YAY!)
BILI: 1.5 (lookin' great!)
CSA: 174 (F-I-N-E)

So, as you can see, no cause for alarm inside. In fact, we heard today that the results from Monday's liver ultrasound indicated "an improvement in V.O.D." due to a reduction in swelling of the liver and reduction of fluid in the abdomen. So, good news is the trend!

By the way, THANK YOU for all of you who prayed for pee and did the pee pee dance at 8 am EST today because today...

...DAYLON PEED!!!!!!!

Seriously! 100mL!!! HUGE, buddy! HUGE!

Why is this so awesome??? Because as Daylon goes, so does Bella! We've been waiting for him to turn the corner so she'll follow along as she's done all along. Remember, these two kids are cosmically attached at the hip, and lay in their respective cribs all of 40 feet apart, if that. I told Daylon's mom, Jennifer, to tell everyone on her blog to do a pee pee dance so that since our lines are crossed, it'll hit Bella! (Gotta have SOME fun with all of this).

In other news...

Ali got a mani-pedi today. Apparently, she was in 7th heaven, as the pictures clearly show. One of the nurses mentioned that I was in trouble because Ali liked it so and will want more, but that is FINE with me... send Ali mani-pedi gift certificates because mani-pedis don't take up any space! LOL. She has gotten so many material things in the past 60 days that she expects a new toy almost daily. So, we're gonna focus more on activities than toys going forward. So, if you just can't sleep at night and need to send her something, send a check and mommy and daddy will put it toward a mani-pedi, trip to the science center, zoo, aquarium, etc. Thank you for understanding!

Thank GOD for good days. We know we are not out of the woods yet, but it's nice to feel a ray of sunshine occasionally break through the trees. Good night.


  1. Seeing Bella's face brought tears to my eyes. Her skin looks amazing. Yay for Ali's cells! We will keep praying for Bella to pee. I am so happy Ali is enjoying herself. My love to you all.

    Grnadma Carolyn

  2. AWESOME update! I will continue you praying for your girl!
    Love in Christ, Mary Chinn, Indiana

  3. I'm so happy you guys are having a good day. Reading your blog made me happy. Ali is too cute with her little pedicure! Keira and I are having a girls night next week to grab some school clothes and we were going to treat ourselves to a pedicure too! Bella's skin looks wonderful! I can't wait until we can have our healthy little kiddies back! I'm seeing the light at the end of the tunnel for these two!...Can ya see it! :)

  4. God Is Good. HIS work in these two children is evident. May HIS work be seen by others and change many lives as HIS healing hands have done using Daylon and Bella to refresh my FAITH.

  5. Bella I am sending you peace to heal you to hold you I am sending you peace to hold you in love. Vicki

  6. Wooooo!! What a fantastic update! Those pictures are amazing.

  7. Tears of joy. No exaggeration.

  8. Oh that new skin looks SO beautiful. Way to go Bella Boo :)

  9. This is such amazing news, Tim! Reading your post made me SO happy for Bella and your family. I'm praying that things keep progressing in this direction!

  10. Look at her precious face!!! I was just about to sign out for the night and I saw her precious face and gasped!! This is so wonderful!! Hooray Bella & Ali's cells!

  11. Wow! I instantly burst into happy happy tears for you all! I love to see those pictures of her beautiful little face! Ali looks lovely also after a day of pampering! Our prayers keep coming for all of you and for all of Daylon's family!

  12. Look at that beautiful face! :) Her skin looks great!! Last night I prayed "pee daylon pee!" So tonight!! "PEE BELLA PEE!!!" :) What a great way to end my night! This post was wonderful!

    Corona, CA

  13. I am so glad to read good news on both Bella and Daylon's blogs today! I will continue to pray for Bella. I pray that you will be able to hold her in your arms again very soon.

  14. I love it! Her skin is beauteeeeful!!!! I'm overwhelmed with tears of joy...Thank you Lord for always being present and watching over Bella. Please Lord be with her tonight and through tomorrow...please protect her and bring her to full recovery! thank you Jesus!!
    Ali is sooooo cute! I laughed at the part when you said, 'Mani-pedi's don't take any room.' Hahaha...I think I step on 2-3 hot wheels A day...and to think that more toys are coming with our baby girl....LOL!
    Good night Bella doll...praying for you girlie :)

  15. So grateful for all the good news -- for Bella and Daylon.
    I love seeing Bella's beautiful face. Can't wait to see her open those beautiful blue eyes, too.
    Still praying for Bella to pee.
    Good to see beautiful Ali enjoying a mani/pedi.
    Love to all, Nanny Sheila

  16. Wow!! We've been playing the Ice Age version of peek a boo with my 8 month old granddaughter...and it was the first thing that came into my head when I saw beautiful little Bella's face this morning: Where's the baby?? THERE she is!! Awesome, awesome, awesome...tears of joy, WooHoo!!, tears of joy. Oh, and I missed yestersay's peepee dance, but its on for 8 in my house today! Hooray for Daylon!! He's the first winner of the peepee contest...c'mon Bella honey, you can be the next winner!! This has been a bit if a weird post for me, but I have so much positive energy this morning...I just can't keep it to I'm sending it out to Bella and Daylon, and all of you there fighting for them, and all of you out here with me, fighting and praying. Blessings and prayers for continued progress and healing...Bella, beautiful baby girl, you are getting well! Hugs!

  17. Wow! It'w working!! So glad you have good news. I'm in the lump in throat, blurry eyes, runny nose mode after reading your post. What a miracle these doctors perform, with God's help of course. Now onward - Pee Pee Pee Pee - Hugs, Terri

  18. I can't imagine that you could write this with dry eyes because it's impossible to read it with them.


    The prayers continue for Bella and Daylon and everyone involved!


  19. "Praise God from whom all blessings flow;
    Praise Him, all creatures here below;
    Praise Him above, ye heavenly host;
    Praise Father, Son, and Holy Ghost."

    The words of the Doxology were running through my head as I read today's post. Praise God, indeed, for all the positive news you've shared with us! Praying for God's continued blessings to your and Daylon's family as you travel on this amazing journey. And thank you for sharing it with those of us "strangers" who - oddly enough - feel so connected to you.

    A friend in NC

  20. Yeah!!! What a wonderful day you guys had. I loved reading the blog this morning and the feeling of happiness that came over me for Bella and you! Her skin looks soooo good! Prayer does amazing things! We will keep it up :)
    Love you guys,
    The Vanderbooms

  21. I keep praying for your sweet little Bella and all of you, to be strong to pass this storm and patient to wait for the good days to come.
    what a wonderful family you have!
    Lots of love,
    Mariana from Weybridge, England

  22. My 3 year old Gracie's prayer for Bella:
    Dear God,
    Please make Bella better so she can play.

    (Followed by her giving Bellas picture a big smooch)

    I am filled with hope and joy for you all, she looks so much better!! Inside and out! Sending love, strength and prayers.
    Angela and Grace Ostermann

  23. Lynne, Bob, Jack and BenAugust 6, 2010 at 8:38 AM

    Miracles abound! Yesterday, Ali said -- "My sister is prettier than me. She's a baby," and I log on this morning to see this beautiful face!! I usually shed tears reading the blog. This morning, they are tears of joy. Much love and continue to pray for pee.

  24. Praying for wet diapers!
    You are witnessing miracles with her skin! Wow!