The New Normal

Is that a smile in there?

There were a lot of prayers said for Bella this morning around the country at various churches and congregations. We could tell, because today was like no other day in this journey for us. It felt...normal.

It was the first day since Bella's birthday that we all started and ended the day under one roof as a family.

It was the first day Bella got to go to the park.

Thanks to our Pastor Dennis and fellow congregant Mimi coming over to deliver flowers from our church, we cleaned and straightened and things look almost back to...normal.

In grief healing, we talk about "the new normal." It will never be as it was, but there is a new stability available from which to reach out and take life by the reigns again. We saw a glimpse of that "new normal" today, and we are grateful TO ALL OF YOU who have held that vision in your hearts and minds these recent days and weeks.

Thank you.

Now to the good and bad of the day:

The Good:

Dressing change at just about an hour again. Ang and I have now worked out who does what and it is running very smoothly. Bless our next door neighbor Becky for stepping up and supporting us the past 3 days while home health care drops the ball.

Bella spent all morning awake and alert making eye contact, and visually tracking (at 6-12 inches), and appeared, like a normal, happy baby.

We stopped giving Bella the multivitamin drops they sent us home with. Passing gas and poop all morning without any pain at last! She's on breast milk+formula already, she's much happier now.

We walked to our neighborhood park today as a family, the way we thought we would all along. There were many many days where we thought even today was out of reach.

The Bad:

Bella is healing well in many places, but her left index and middle finger, shin, and ankle are all having trouble healing. We realized Bella kicks her left shin - more like rakes it - with her right foot, so she's beating herself up. The skin affected when I accidentally pulled her boot off looks like it has died and is going to slough off now. The fingers are tough because it is difficult to wrap them in such a way that keeps them covered and moist enough to break down all of the mangled dead skin on top from the giant blisters that formed in her isolette. She has to wear gloves on both hands now as she has knocked the skin of her lips more than once just today. Because of her GI pain, she has developed blisters on the ends of her fingers from squeezing her hands so tightly.

Ali spent so much time with Grandma recently that she has forgotten how to do what she's told! LOL. You can SEE the shock on her face when she asks mommy or daddy for something and they say no. It's mostly pretty funny and only occasionally annoying. Wouldn't have it any other way, though, grandma has been a LIFE SAVER over these past 3 weeks. We love you grandma!

The Request:

Even with all the success, blessings, and miracles around, it's gonna be a long time before some of her wounds heal. Being in charge of that job is both empowering, frustrating, and scary at the same time. Wound care / daily dressing changes is the high point of anxiety for the parents and pain for the child. We have to psych ourselves up for the task every day. Please pray that Bella's wounds heal fast and permanently, please pray for continued strength for mommy and daddy as struggle each day to recover and reorganize.

Hold with me the vision that says, "One day, Bella will look back on this 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."

Good night and God Bless each and every one of you for your love, generosity, and support.

Thanks to you diehards who even get on here over the weekend!

Dressing update: wound care took 1 hour today! We're starting to get the hang of it, and our neighbor Becky has volunteered to assist since our home care nurses couldn't staff Friday, Saturday, or Sunday. It's all good; I'd rather have Becky by our side than any stranger at such a time. NO new blisters today. Although, we figured out that Bella is doing a number on her self. We uncovered a wound on her left shin that we couldn't figure out where it came from. We thought maybe it was from our hands lifting her legs during diaper changes, but turns out, she kicks herself in the left shin with the inside of her right foot! Tomorrow, I will add shin guards.

Reflux update: Whatever it is Bella has, the formula didn't completely do the trick. When she either passes gas or poops, she screams in pain. That's really a drag, because she's pretty gassy. Really don't know what to do till Monday about that one. Also, she kicks and hits like a street fighter. She HATES diaper changes (kicks and screams till she's purple, and tonight was inconsolable even after a fresh diaper and a bottle. Is that colic? Ali was a saint in comparison!

Lastly, please go to http://www.youtube.com/watch?v=VZ9MXSCfMzw to see a tender video of Bella. It is her inner essence revealing itself amid the tumult her body is going through.

We love you,

Tim & Ang

P.S. Please purchase Bella's Song available above! Do it now! :)

Providence Story of the Day

We ran out of the most important product for Bella's wound care yesterday. No problem; box loads of products were en route and would be here today. However, on Thursday the home health nurse says she can only come at 9am...products won't be there by 9 am. I'm gonna have to use a different dressing...something less than what the wounds need right now.

9:05 am: The nursing manager calls to say the nurse called in sick with the flu.

Products show up at 10:30.

We head over to CHOC for Lactation Clinic, come home, and home health leaves a message: no coverage. (By the way, they already said no coverage over the weekend, too. So much for the 7 consecutive days of nurses the CHOC Case Manager promised me)

1 hour later, Becky ,my next door neighbor the nursing administrator indicates not only will she come Sat Sun, but tonight as well.

8pm: We dress Bella's wounds in 90 minutes listening to relaxing classical music, and use the RIGHT dressings for Bella's left leg with the RIGHT amount of people.

Bella slept well last night and today, crashing from her two day long scream fest. The Isomil formula supplementing the breast milk seems to be working.

While her fake looks a bit worse for wear today, ALL of Bella's wounds look better than yesterday.

Thank you all for visiting this site. Please go to www.careforanabella.com and buy Bella's Song.
I need to sleep now.

We love you all!

Update 0601109 "27:41"

I am inventing new time with these late night posts.

Good news. NO emergencies today. Wound care went very well. I think we got it down to 90 minutes today with almost no help from the nurse. Actually, she only helps with extra hands getting something we forgot or soothing Ali with a pacifier laced with sweeties. We found a new, better place to do it daily with a plan of how to integrate dressing changes into our family's daily routine. Eventually, once Ang is back working, we'll put Ali to bed in the evening, then change Bella's dressings and put her to bed. Just having that kind of rather simple plan gives us the vision that even while Bella deals with this unusual disease, we can somehow integrate her needs into a relatively normal home.

Btw, we just got 3 hours of sleep for the first time in 2 days and it was AWESOME. :)

Having to be patient to wait 3 days or so to see if the new formula supplement kicks this reflux was killing me. Actually, just about every facet of this experience was killing me. I think as I drove to pick up Ali from daycare this evening, I hit my rock bottom. But guess who was sitting at the bottom waiting patiently? God.

I realized that I have been trying to control Bella's disease and ultimately her fate. I thought, "If I just get enough people praying for her, I can cause her to miraculously get better." It became about me. As a parent, of course I want her to get better and I am praying, as all of you are, for that miracle. And yet, in that moment, I understood that, "Yes Tim, there are things at work that 1)are not about you and 2) are more powerful than you." Each new blister mocked me into realizing I am powerless over controlling her.

In that moment, I surrendered to EB. I have a beautiful, magical, miraculous daughter, and she has EB. Now, she may not have it her whole life, and yet she may. But either way, I'm walking down whichever road by her side grateful just to have her.

That's when God's grace flooded me with peace. The peace I have been without (with tiny exceptions) since May 27th. It's a conundrum; in order to have that peace I so desperately needed, I had to give up asking for it.

Then it showed up.

I'm sorry to steal the spotlight a little here from Bella, but it is a big day for me because since that moment, I have been at peace, and enjoying my daughter and the rest of my family immensely. I no longer have to put on the strong face to write this. In fact, I went to bed content, as did Ang, and we forgot to check the update page! (Sorry ... we had been up for 2 days straight ...)

This is a long, moment by moment journey, and thank God for it, because now I see Ali's perfect skin, and realize what a miracle every action, every activity, every game played...truly is. I got to fall in love with both daughters again today.

Last, you have to see Ang in action to witness the power of woman. She is Rock solid and cool as ice. A stronger woman I do not know and I cannot imagine being side by side through this without her...not to mention that she dropped just under 30 pounds in 2 weeks post-op. She is healing and strong, not just for herself, but for her children, and her overtly sensitive and emotional husband. She is the foundation and the mortar of this home. Thank you, Angelique.

Keep it coming, your prayers make moments like today possible.

Here it is again. 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."

We love you all. Thank you for walking this journey with us.

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!

Tim