Monday, September 6, 2010

September 6: Day +66

Check out those bushy eyebrows comin' in!

Hello! Hope you all had a wonderful Labor Day!

Well, like I said yesterday, nothing like threatening Bella with an impending tracheotomy. She had another good day with the ventilator. She's done so well, that they've weaned her all the way down to a rate that they often extubate kids at. The vent is set to give her 15 breaths a minute, and she is breathing between 25-30 times a minute, so that means she is taking a breath on her own in between almost every breath the vent gives her. The breaths she is taking are good, full breaths. Right now, the team is thinking they'll let her take every other breath for a day or two to slowly strengthen her lungs. She is battling two enemies: atrophy and edema. She hasn't used these muscles on her own in over two months, and sitting on top of them is 9 pounds of excess fluid. So, we need to take it S-L-O-W this time.

Is there a baby in there?

I pleaded with Sam, the attending ICU doc who I am rapidly becoming buddies with, to grant us a "stay of execution" from Thursday's trach surgery. he agreed that if Bella continues to rally, we can hold off on the trach, but the minute she stalls or regresses, we gotta do it. Fair enough. I shared with him my concern about keeping it clean and the skin breakdown it will cause due to all the excess fluid in her neck and chest, and he agreed they are valid points. So, Bella is not a good candidate for a trach between having EB, a BMT and FO (fluid overload), AND she is not a good candidate for extubation due to the FO.

Once again, caught between a rock and a hard place.

Some other good news is that we discontinued versed today! By tomorrow, we will be off it completely and on ativan to help with the withdrawals. So, we are definitely making progress. Also, we ran Bella's Prisma circuit to give her back an extra 10 mL of fluid every hour today and she didn't need any extra fluid tonight! YAY!

So, pretty pretty PRETTY please LAY ON THE PRAYERS THICK that Bella continues to do well breathing, and that her capillary leak goes away, and finally, that her kidneys begin to work again. Also, we want to wish our primary nurse Lori a fun-filled and relaxing vacation! We will miss you dearly, but you have more than deserved it!

Bella's buddies, and a card Ali made all by herself...

Thank you again for praying for Bella, and for our family. May God bless each of you as well.

Ali rocking the kung fu in her new wellies...

Ali pretending to be a baby in daddy's arms in Bella's room...


  1. Praying so hard for Bella to keep this rally going! Praying for all of you for the support you need to stay strong for Bella!

    Tina, Mike, Becca & Liv in NJ

  2. Hey new friends...I had a dream last night that day +75 was a special day for my dream she was sitting up and laughing and waving! I woke up crying for joy.

  3. Bella and Daylon are looking more alike with the new cool!
    I love that she continues to rally under pressure :)
    Thanks for the shout out...hoping to raise lots of $$ in bellas name. If all your readers pledged $10.....awesome!
    Specific prayers on the way...

  4. Extra prayers coming her way... stay strong!

  5. I am glad that she's had a good day. Praying for her multiple times every day! God bless!

  6. Such wonderful news. My heart is full with joy and hope. I am sure yours is too.

    Keeping you all in my most sincere prayers.

    Carla, from Portugal

  7. I'm praying for Bella today, as always. Hope she continues to stay stable, and maybe even some improvements on the way!! I can 100% visualise the day Bella is laughing, playing, and being pushed around in her stroller again! Can't wait to see the pics!
    We all love you Bella, keep fighting!

  8. Love the picture of Ali in your arms. You sure do love your daughters, don't ya!!!
    Extra prayers for beautiful Bella. Keep the Faith. God Is Good All The Time. Peace and love. Love Leah's Nana

  9. Once again, the Amazing Bella rallies! Keep it up precious baby! We're praying for you to keep improving each day. At this rate, you'll be opening those beautiful eyes and smiling soon.

  10. Just wanted to say that I'm still thinking of you guys constantly and praying hard. Esp that there won't have to be a trach. I'm so sorry. There are no words. I'm here if you need anything or want to vent... You guys are doing an absolute amazing job. But you already know that. Keep going strong. Love you guys!!!!

  11. Really happy to hear that Little Miss Bella is holding her own right now, regardless of her motivations! I sent a message to everyone I know asking for prayers...I know the heavens will be busy tonight :) Blessings to you all for strength, and hope...and especially for Bella, beautiful baby girl, who will be well!