August 9: Day +38

Happy Day!!!!!

Daylon's extubation was a SUCCESS! Please got check out Jennifer's (Daylon's mommy) update at their blog listed on the right.

Bella had a pretty rootin' tootin' good day as well! Docs were buzzing at her progress today! They were able to turn down her norepinephrine and her vent quite a bit. They also took off a bunch of the excess fluid they left on her on Saturday. Her blood pressure was STRONG throughout the night, all day, and into the evening, but by about 8pm, she had had enough of all the weening and evened off for a while. All in all, GREAT strides today.

We needed to go up on her precedex today as well after watching her do the "reverse caterpillar" breakdance move in bed. She was a breakdancin' fool this morning, and again this evening. It was kinda cute to see her so animated, except that all the movement could cause damage to her airway from her tube, so it really was more stressful than anything else.

Renee, her evening nurse, and I started a bet on what day Bella will get extubated. I said Thursday, and she picked Wednesday. We started getting other staff in on it, and at one point, there were more people thinking Wednesday than Thursday, but Bella recovery hasn't exactly moved in a straight line, so I foresee a little ebb and flow of progress between now and then. Regardless, there is a lot of good energy right now surrounding Bella's care, and I think Bella just doesn't wanna get left behind on 5C now that Daylon is off his vent! She's so smitten.

Angelique has a side bet going that Bella will also PEE on Thursday. I learned today that it is hard to pee while on continuous dialysis because it is constantly pulling off whatever is going in, so it doesn't give the body a chance to convert excess fluid into urine. That made me feel better; like her kidneys may not be as bad off after all, but more like we are doing all the work for her right now to help her recover.

Anyhow, it's nice to have a positive air on our wing; room 1 and 3 on the PICU have been pretty intense these past 40 days and 40 nights. I am grateful that I've been allowed to sleep at home every night with Ang and Ali this whole time so that I can remain healthy and rested. I know that once we get back over to 5D, it's gonna be a little hectic at night for a while, so sleep while I can!

Lastly, I want to thank those of you who have taken the time to post comments about returning to prayer and buy groceries et cetera. I sat on my prayer bench this morning and wept tears of joy reading those comments. I am reminded of a song I wrote called "Ripples in the Pond." I have shared these words before, but not for a long time. The chorus is:

Sometimes you never know

how far the ripples go

when you throw yourself

into the pond called 'Life.'

Sometimes you never know

how far the ripples go

but you throw yourself back in again and again...

... with a smile.

This community is real. We love one another. We pray for one another. We are a part of each other's lives. Though most reading this have never met each other, we feel connected. Bella connects people. Our evening nurse Renee DREAMS about Bella, and our Renal Fellow, Jurat, loses sleep over her. When you write and tell me that Bella is on your mind or in your heart as you move through your day, it washes the pain away. In a world where it is so easy to be resigned and cynical that one person can make a difference any more, I watch my daughter, a helpless child, mobilize an international army of prayer and support.

I also want to make a special acknowledgement to those who lift Bella up in prayer. That is your most sacred, most intimate space. That is your most private time. THANK YOU for allowing Bella, and our whole family, into such a sacred space. We are honored to be there.

For those of you that may not call your thoughts, mediations, wishes, or intentions "prayer," I thank you with the same reverence, for I believe the energy and purpose is the same.

When people ask, "Why does God let bad things happen in the world?" I think it is so we get the opportunity to experience ourselves as generous, loving, compassionate, and nurturing. We don't need tough times to call upon these things. However, I think each tragedy or trial is 'an alarm clock' that 'wakes us up' to the opportunity to BE these things FOR EACH OTHER. THAT is when I experience the richness of what life has to offer. To give and receive these things, that is what it is to be wealthy.

I may not be financially rich, but I am wealthy beyond my dreams. Thank you for 'investing' in us. We are so blessed to have you walking with us. Good night.