October 1: Day +91

Ali loves that baby sister!

Heaveno!

God is so good. Why? Because as we were leaving tonight at 1opm, we were on track to hit -100 mL for fluid for the day, AND Bella's blood pressure was...

...100 over 70!

I can't tell you how much joy is in my heart right now! We were so worried we somehow screwed Bella's blood pressure up yesterday going for the -200 mark. We learned our lesson. We can't pull off more than 100 per day. NO PROBLEM. We have our course! We shall now sail forward, blood pressure confidently in hand and pull 100 mL a day off until we get back down to around 11-12 kilos. Then... wean off the vent! Then, try hemodialysis!

There is just so much RESPECT and HOPE around Bella now. What a difference from last week, huh?

We had a nice visit today from three members of the U. of Minnesota Gopher football team. Adam Weber, Kim Royston, and Kyle Henderson stopped in to deliver a signed poster from the entire team. At first, I was curious to see how they would handle being in such an intense setting. What I can tell you is that I was extremely impressed with how present they were, how connected to the moment, and how polite and courteous they were. They were a class act. Three young men putting time into something small that makes a big difference. I told them about Bella's blog and gave each of them a personal, hand-written thank you card. I wanted them to know what an impact they have when they do such a seemingly innocuous thing as visit the hospital.

A class act. Thank you, fellas!

So, when was the last time you visited a retirement home, children's hospital, shelter, and let someone just tell their story?

I confess that when I was in college, I had to do service work in order to fulfill my church scholarship. While I derived some joy out of it. I confess that I spend little to no time volunteering since "I don't have to." (Yes, yes, I realize that I am a little busy taking care of Bella, but I honestly would not volunteer on my own as much as I did when I had to.) Please, don't be like me... forced to make a difference. Please, take it upon yourself to reach out. You will be amazed how GOOD you will feel, and you may or may not ever get to fully know the impact you make on another, but suffice to say that it is greater than none, and that alone makes it worth it for both of you.

This morning, when I sat Bella up and put on Mickey Mouse Clubhouse (her FAVORITE), I caught her sneaking a peek at the TV! We can tell that, while she keeps her eyes closed most of the time, she is still fully aware of all of the sounds in the room, and is "awake" and "asleep" at different times of the day, even if her eyes don't open. Her heart rate changes, her respiratory rate changes, her blood pressure changes, it's pretty clear. it was cute to see her catch a glimpse of her favorite show!

My view of her...

Her view...

Tomorrow, I think we hit the Owl movie... whatever that is. I'll be in rounds first thing either way, and we'll do a circuit change tomorrow morning, hopefully in the AM before her morning meds at 11 (the one time of the day her ativan and methadone are given at the same time).

The butterflies are upon us!!!

Please keep the words of support for Bella comin'! I read to her every comment every day now, and it is a ritual that uplifts not only Bella, and myself, but each and every staff member that hears the love and generosity and faith Bella's world-wide only family has for her. And please please PLEASE, if you feel comfortable, put your name and location. I got the MOST AMAZING letter today, and I so badly wanted to know who wrote it so I could say their name and thank them personally, but alas, I'll never know.

Next prayer request: We want to drop the vasopressin to just a whiff so we can resume tube feeds. Bella hasn't had food in her gut for waaaaaaay too long, and we need to be down to a bit more on vaso (or OFF!) in order to do that.

So, the exact intention would be that Bella's blood pressure can stand on its on such that we can resume tube feeds. Please hold this thought for a moment and lift it up in whatever way works best for you. Thank you for offering all of the energy to Bella that you do. I am firmly convinced, considering her mystifying myriad complications, that it is your energy that has kept her strength so she can battle back through EVERYTHING she has battled to this point!

Thank you for that gift. You have given it generously.

Also, please send Angelique and I physical and mental energy. We are pretty worn down from the roller coaster of the past 10 days. The fatigue in my body hurts a little more each day. THANK GOD we get roughly 7 hours of sleep a night. The 13-14 hours in the ICU for going on 3 months straight now (albeit with some wonderful weekend breaks) is pretty draining, gotta admit. So, thank you!

One day, Bella will look back and say, "Yeah, when I was born I had this rare skin condition, but when they brought me home from the hospital, it went away."

God night.