Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Wednesday, June 24, 2009


First, our little adventure, and then down to the nifty gritty of her daily life here at TCH. 

Yesterday, pedi surg got back to us about her g-tube being replaced with a mickey (g-button).  They felt that given her complications after having her g-tube placed and her fundo, that they wanted to wait two full months……but not from that surgery …from her exploratory surgery where they removed part of her stomach, tried to drain the abscess and did the partial fundo.  So, July 22nd.  I, for one, plan on being home by then.  What does that matter?  Well that means coming back here to TCH – and as long as we are vent dependent we will travel to and from doctor’s appointments in an ambulance.  Sounds like a lot of hassle for a 5 minute procedure, but what can you do?

june 24 020Well, if you are a 7 1/2 month old baby girl who likes to hold onto to wires,  you can get ahold of the g-tube that Mama has so pain-stakingly kept out of your reach and yank the whole thing out, stitches and all, right after Mama leaves and the PAs and RNs are switching for the night!june 24 015

That is one way to get surgery’s attention.  Then they might consent after all and give you that mickey button – one month before they wanted to. Crazy girl!  :)june 24 019

In other news, she lost weight again, but I expected that, since she couldn’t eat without her g-tube.  Now that her mickey is in, she is getting feeds again – and at a higher rate.  She was positive 300 last night.  Her lungs sound a little coarser, but not wet.  What a blessing that she is doing so much better.  Before, being that positive, she would be in respiratory distress now.  But she is doing well.  She has also been started on baby aspirin to thin her blood a little.  Her bronioscope (sp) is scheduled for tomorrow. 

More fun pictures:

june 24 018

She is finally starting to use her hands!! I am so excited!  I placed her ladybug right next to her hands.  When she moves them, she hits the ladybug – and she likes it.  So now she is starting to voluntarily (versus involuntarily) hit her toy!  Yeah!  She won’t reach for it yet if I move it away, but baby steps.  Yeah Bell!june 24 001


Our good friend Linda was in town.  She came up and got to hold our sweet girl.


june 24 022



From PT today.  I love her eyes!  There is so much in those eyes.


Lacey said...

I can't believe how much she reminds me of Jax. Those eyes have such a story behind them. Of strength and courage. She bumped that ladybug, and is like, wow, thats how I get it to work. Baby steps indeed.

Heather said...

Funny about eyes,I was just thinking those very same things this morning!My walk down memory lane with Zoey's blue binder did that!Zoey "spoke" volumes to me in those early days.She continues to do the same now.The eyes say so much without uttering a word.They truly can be a window to the soul and express so much without a single sound.I know you will love the Mickey.Life is much easier with it.I cannot say it enough ... she looks wonderful Shelly.Really wonderful.Moving right along Miss Bella.Just as I knew you would!

Shelly,check out a new button I have for another miracle baby,if you don't know of her already.Her sweet momma found me a few months back and I have been following their story.The feisty one's name is Kaelyn.Her mom and dad could use all the support they can get.They are very strong but I know would appreciate hearing from others traveling a similar road.Thanks in advance.

Anonymous said...

Bella, charting her very own course...didn't want to wait for the button, so she made it happen earlier! Just how bella does it! :) And you are right, those eyes hold so many of the world's secrets, eternal secrets and great, pure love. Beautiful eyes!