Friday, August 6, 2010

August 6: Day +35

Hello, world.

I'm tired, but happy, so we'll see how much I ramble on about tonight. First off, Bella's blood pressure is getting A LOT BETTER. We have gone down on her norepinephrine, resumed feeds, and continue to pull fluid off her. It was another optimistic day in rounds.

Here are the numbers...

Weight: 11.2 (down .2 from yesterday)
I/O: +78 (not bad, considering we were off dialysis for around 6 hours yesterday)
WBC: 12.5 (up again, personal best!)
ANC: 9.4 (up again, personal best!)
BILI: 1.6 (holding steady... a very good sign that we caught her V.O.D. in time)
CSA: 168 (holding between 150 and 200 is wonderful right now... helps kidneys come back)

So, we're inching toward her original weight of 10.7 before we can begin plans for taking her off her ventilator. Hopefully, with her blood pressure improving, we can move back to intermittent dialysis instead of continuous. That would make getting off the ventilator A LOT easier, since they will need to ween her off her paralytic meds to restart her breathing on her own. When she gets off her paralytics, she's gonna be a movin' and a shakin', and the current dialysis machine would simply NOT tolerate that much movement.


1) Get her weight back down to 10.7
2) Switch her back to intermittent dialysis (4 hour chunk once a day)
3) Ween her off her paralytic medicine
4) *Somehow* get that tube outta her throat safely. (cringe)

Today, we our problem began with really high heart rates that lasted into the evening, but now that her heart rate seems to be under control, her blood pressure is alllllllll over the place. So, even though things are looking good over all, we are still in the ICU after all.

Sorry, I don't have a lot to write about, things overall are progressing well. Ang and I are t-i-r-e-d, but happy. Bella is healing, Ali is having the time of her life, Ang and I are spending a lot of hubby/wifey time together... life is GOOD.

Cute new blanket, gift from one of mommies from day care back home... thanks, Nicole!

Okay, maybe I will mention one more thing. We will be donating proceeds of book sales going forward to Ronald McDonald House of Minneapolis probably for quite some time. If you have been moved, touched, inspired, or have just enjoyed my writing, will you please consider purchasing a copy of Bella's Blessings: A Humble Story of Providence? It chronicles the first 3 months of Bella's life in much the same way I am capturing this chapter of her life. However, it lays out the spiritual context from which we have been operating this past 14 months in greater detail than I have gone into during transplant. We truly feel Bella IS a blessing to the world, and we chose that context early on, and the whole world changed before our eyes. Mind you, none of the events changed, but when we changed our response, the outcome transformed into something inspiring even to us.

I have made a major transition in my life from full-time music therapist to primary caregiver and part-time author/blogger. Your support would help me continue to provide laser-focused care for Bella going forward. If you haven't purchased a copy, please do so today. If you already have, will you write a review either as a comment here on the blog and/or on the purchase page (click on the giant book on the right to go there)? Also, will you consider buying a copy as a gift for that one or two people you know would totally be inspired as much as you were? I have been really hesitant to plug the book over the past month, but they don't sell themselves, so thank you for allowing me to talk a little about it here.

Good night.


  1. I had a whole review and I hit a button...poof! Gone! Typing on my new iPad...let's try again.
    first, I want to buy a few copies for the RMH there, and the hospital, too.
    I have been following since day one. The book, to me, has only made me closer to the journey. (geez. My first attempt was so much better). I get emotional thinking of Ali and bella reading it when they are older. Bella will change the world, with big sister watching her back.
    I love the honesty and beauty in your story.
    Now, as a self confessed kids' book geek and junkie, I think a childrens book is next. I'd love to help with that...from the siblings' perspective and the butterflies' perspectives,too. ( one of goals is to illustrate a book, you know?)
    I hope all your readers buy a copy. Or 2 or 10. Even if younger thinking "I read the blog. I already KNOW the story, you are wrong. Because I read the blog, I spent time at your house...and the book is on my coffee table as a reminder of all the things I should be thankful for.

  2. ok...I just lost myself in happy tears when I saw Bella's butterfly blanket!! THIS made my day!! I am purchasing books TONIGhT....I've been meaning too, and your blog tonight gave me that extra 'push' I needed ;)Bella is truly an inspiration to me. Her journey has definitely opened my heart, in wanting to be a streak of happiness with anyone and everyone I come into contact with daily. We have no idea what people are going through and what they have to I have chosen to smile at strangers, talk to patients waiting in the lobby (when I call on doctors offices for work), express my thought out loud to someone that looks great for the day, maybe lonely or just someone who needs someone to talk too. The other day, I striked up a conversation @ a doctors office, and before you know it...I had everyone who was waiting for the doctor, come over to join in on the conversation. There was about 8 diabetic patients around me, and one patient was on an oxygen tank, and walked over to sit next to me. Thank you Bella for leading me to these are truly a blessing and God is working through you and touching the lives fold and folds over. Sweet dreams sweet baby girl...I can't wait to check back in with you tomorrow!
    Praying for you lovely!

  3. YAY! GO BELLA! I'm glad to hear the good news. Lots of prayers and love still coming your way. Stay strong. God is GREAT!

    Take Care,
    Amber McLaughlin, CA

  4. GREAT news on Bella's numbers! Love and Praises! We have two copies, but I will focus on bringing your inspring story outside of our direct sphere of influence. The Froehlich's send their love and prayers, we saw them this week in Redding, neat folks, same great house/yard.
    All our love,
    The Gleason's

  5. Let the good news keep coming. Go beautiful Bella.Love, Nanny

  6. Jack and Molly's NanaAugust 7, 2010 at 9:35 AM

    Gosh, it just seems to be getting better and better. I've loved seeing the photos of Bella's beautiful little face recently, and the smiles from Ali, too. I imagine that if you'd turn the camera on your face we'd see one there also.
    Hope you all have a wonderfully calm weekend, and that the big girls enjoy their lake time. Blessings to you all!