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.