Thursday, November 06, 2008

The new belly.



She had her first feeds today, clear fluids only. The first one was fairly traumatic, the drainage tube had fused to her tummy and removing it was very unpleasant. Once that was over, hooking in the feeding tube was not as problem and she didn't mind the feeds at all. Though, she looks less than thrilled in the photo...



My parents came to visit, which mostly consisted of sitting and staring at her while she stared at her Tinkerbell movie. After that crazy exhaustion inducing exercise, she took a really long nap and when she woke up, she SAT UP! Then I asked if she wanted to stand, she did! Then I asked if she wanted to take a walk in the hall and SHE DID! We looped the floor twice before she crumpled back into her bed. She still hasn't moved much. That is hard work for a tired, pained little body. After crawling back in bed, she watched more Tinkerbell. Surprise.



After Tinkerbell time, Josh and BubTar came to visit. BubTar and I went to dinner together and Josh and KayTar bonded...by watching Tinkerbell. When we got back from dinner, the radio show people were there dropping of the goodies for the nightly craft contest, a blank watch and stickers. She decorated hers with stars and fish stickers, with a little help from her brother.



They also dropped off a letter from our friends, Kristin, Easton, and Dalton! I had her pose with it, but she couldn't quite smile...



The boys stayed long enough for me to shower (THANK GOD FOR SHOWERS) and then they went on their merry way. While I was in the shower, though, KayTar broke her Tinkerbell DVD. I fear for our survival without it. EEEK! My sister might have mercy on me and bring us a replacement tomorrow. I think "Watch Tinkerbell" is actually written her post-op orders...or at least it should be.

Later on, the radio people came back to award KayTar her prize for winning the craft contest, a Barbie. Her very first. She was thrilled and has been brushing its hair for about an hour now. Simple joys. Consequently, she won the art contest last year when she was here for her EEG, too. I wonder if they stack the odds for adorable little Tars.



Tomorrow, she'll start Pediasure feeds in her tube. She's only had three sips of fluid since 9:30pm on November 3rd and she still doesn't want anything to do with eating or drinking orally...and for the first time in her little life, I DON'T CARE! Honestly! She can be fully hydrated and nourished whether she feels up to drinking or not. A miracle in the form of a little plastic button. Amazing.

[Insert long, heartfelt sigh of relief]

23 comments:

Christina said...

She's looking good! And I can just imagine your relief at knowing she will be nourished. Continued hugs and healing thoughts to you guys.

flutter said...

she's going to bloom, I just know it

sheree said...

awesome. So glad to hear she is doing well. Now if only your sister can get that tinkerbell dvd to you asap...

:)

alejna said...

The new belly is beautiful. I'm so happy you'll get more peace of mind.

Assuming you can replace Tinkerbell, that is.

jeanie said...

Wow - what a weight off yur shoulders.

Ahh - but has she seen "The Princess Bride"?

ewe are here said...

She looks good. And the tube will help her stay that way.

Tinkerbell, huh? Good taste. ;-)

~aj~ said...

Somebody get that girl a new Tinkerbell movie A.S.A.P!!!

I can't believe she's already been up for a walk. That's wonderful! Her sweet little smile is such a blessing. So glad everything is going well.

HUGS!

Mad said...

And look! That belly is still beautiful, as is the girl herself. Soon she'll be running and jumping and laughing...

BTW, Miss M has suddenly become Tinkerbell obsessed and we don't own the dvd. Part of me wants to get it for her; most of me knows that she'll demand to watch it 24-7 and she won't have just cause for lying around doing so.

Liana said...

What a relief, indeed! I'm really happy for you that the surgery went fine and that your precious girl is recovering- and of course, best of all, that you can keep her fed and hydrated now! Truly wonderful. Hooray!! :)

Mimi said...

Oh, wonderful news. Sounds like you are all doing very well, and I'm so happy to note that this decision is already paying off both in the form of nutrition and hydration for Kaytar, and less worry for you.

I think she looks adorable.

motherbumper said...

*sigh of relief* from up North. And eeeeeeeek - A BARBIE?!? Don't tell Gigi or she will want one too.

crazymumma said...

Oh man the decisions we have to make on their behalf. She looks good hon. She looks darn good.

Aliki2006 said...

I'm so glad it all went well! Congrats to all of you, and hugs to KayTar.

I'm sure you must feel tremendous relief.

Amy Y said...

Sighing along with you, Mama. Glad she's on the mend!

Jaden Paige said...

So happy to hear little Kaytar is feeling a little better!

Sounds like you have a little artist in the making :D

InTheFastLane said...

love the forced pose smile..heh :) Hope you are home soon.

Anonymous said...

That sigh of relief is what it was all about. So happy to see her and know that things are going well. Still thinking of you!

Kristin said...

I'm feeling relieved right along with you...what will she give us to worry about now??? :) Or once she's home and recovered and all that, that is.

So did she start solids today? Her little attempt at a smile with her truck card is breaking my heart a little.

Hope you get your Tink replacement very soon. Or she might just have to enter and win another art contest! :)

Gwen said...

yay for bellies that provide adequate sustenance, no matter what they look like!

and yay for tinkerbell! (?)

Sheila @ Dr Cason.org said...

I must be pretty emotional today- or maybe it's the beer I'm drinking- anyway I just teared up looking at her!

It's is a relief to not have that fight I'm sure.

Anonymous said...

I am so glad the tube is working so well!

moplans said...

YES! That last bit is exactly what the tube is supposed to do. I am so glad it is over!

hey her site looks great! We had julia's covered in gauze for a couple of weeks. Does it heal faster uncovered?

Chaotic Joy said...

Oh Kyla. (It seems I start all my comments with those words lately). I am so glad she is doing OK. That you are home safely now. That she is getting what she needs. She looked BEAUTIFUL in her pretty tutu.

My husband came to the computer to look at the pictures of her feeding tube and our hearts went out to you. The little tiny taste of this struggle that we have had with Ben has given us such a completely different perspective on this type of thing.

But this is a good thing, I sincerely believe it. How is Bub handling everything?