Monday, September 13, 2010

September 13: Day +73

Daddy snuck in some cuddle time with Bella this morning!


Man, it was a l-o-n-g day today. Arrived at the hospital at 8 am for morning rounds at 8:15, and from the moment we concluded rounds till we left tonight at 9:30, we were doing something with or to Bella. She's gonna sleep for 2 days probably.

Judy, the AMAZING RT who made Bella's new fab headgear FROM SCRATCH...

We changed out her dialysis circuit today, and while she was off Prisma, we switched out her bed for one that has a working scale on it. The scale broke on her other bed over a week ago, and we've been waiting till a circuit change to switch beds. The problem was that the circuit crashed early Friday morning (like 3 am) so we had no interest in doing anything but getting her back on the circuit to minimize more "fluid flooding" on that day. Monday rolls around and it's been 72 hours since a circuit change, which is the optimal time to switch it out and we were all over everybody in the Renal Dept. to make it happen. So, new circuit, new bed, new weight:

14.6 kilos. Yikes.

Her "dry weight," which is how much she 'should' weigh at this point is 11 kilos (they measure in metric in pediatric and neonatal because you need to be able to make smaller divisions than ounces for the little ones). That means she's got just under 8 pounds of water sitting on her. It is mostly from her ribs up to the crown of her head. Bella. has. no. neck.

Bella in her new bed... I swear, she's in there somewhere!

Next up, liver ultrasound. Haven't had one in quite a while, and docs wanted to see how it's doing. Didn't hear a peep from anyone afterwards, so I guess no news is good news.

Bella's buddies and balloon watching over her...

Okay, then it was my turn. I spent the morning, when not holding Bella in the air to switch beds, cutting dressings for a full body line and dressing change. I started her dressings at 2:30 and finished up at about 8:30 tonight. We hung out while she tanked on her second pressure support (you would too if you had the day Bella did), then hit the road. We tried every trick in the book to stimulate her enough through the hour, but she was OUT COLD and not breathing more than 12-16 breaths a minute. That's not gonna cut it; she needs to breathe at least 16-20 to barely pass the test, so I imagine we'll rest in the morning tomorrow, and MAYBE try again in the afternoon or evening.

Fabulous socks of the day!

Lastly, enjoy the portraits that the organization Now I Lay Me Down To Sleep took of us! The pictures are absolutely amazing! Angelique and I can't believe neither of us screwed up the picture of all of us! We are really grateful to Ann Niedermayer for her wonderful work. Thanks, Ann!

God night.


  1. I know I don't post as often as I should, but we are still praying. Our men's gourp is restarting tomorrow morning, so you will be having a bunch of guys praying for all of you every Tuesday morning again.
    Love and Prayers
    Russ, Jen, Cody, Casey, & Celeste

  2. Your family photos are lovely! Thoughts and prayers with you all!

  3. I absolutely love, love, love the picture of you and Bella cuddling. Awesome! And those family pictures are fabulous as well. Lots of love and prayers for your family are still coming your way. Stay strong.

    Take Care,
    Amber McLaughlin,CA

  4. Wow, the pictures are beautiful! I am glad Bella is having a number of stable days. Praying that she improves a lot over the next few days.

  5. The photos are gorgeous, what a talented lady. You guys look fantastic. Hope Bella gets her rest tomorrow and dad gets a break too.

  6. Love the pictures! Just beautiful. Thinking of you in Pittsburgh!

  7. Beautiful picture of you holding Miss Bella, I bet she loves that contact! Praying for great days ahead, and for Bella to get stronger and the pics of the family too, they are almost ethereal :) hang in there, blessings to all, and especially sweet Bella, beautiful baby girl, who will be well!

  8. Pretty pictures. Praying the water weight comes off soon. Is there any update on her kidneys?

    Still praying for your precious family.

    A momma in TX

  9. Loving all the pics today. What a beautiful family (inside and out) you have!

    Praying for healing,

    A friend in NC

  10. Still here and still praying for you guys. The pictures!!!!!!!!!!! OMG They are wonderful!!!!!!!What an awesome memory captured

  11. The picture of Ali and Bella is adorable! Ali looks so happy being next to her little sister! :) Praying for you all ALWAYS. I can't seem to get Bella and Daylon off my mind EVER! :) I have a picture of each of them at my desk at work and everytime I look at them I say a little prayer! :) Keep up the AWESOME work Tim! You are such a great father!

  12. Beautiful pictures! Wow!
    Your strength and faith is inspiring. Our continued prayers for you all.
    All our love,
    The Gleason's

  13. Such wonderful pictures to have and to share.

    Krista Boyd