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!

YAY!!!!!!!!!!

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.