Wednesday, September 14, 2011

YES Today!


We're Home!!!!!

This was our SIXTH time coming home from a hospital admission. Added another 4 days to her "# of days in the hospital" to clock a total of 338 days now.

A doctor said about her CDIFF: "I don't think this is her problem, but given her past track record, we want to treat her for it so she doesn't have to be on isolation the next time she is hospitalized."

Mommy's thoughts: At first, I was a little irritated. Let's not "assume" Annabelle will be visiting the hospital again soon! I'm a "think positive" kinda Momma!

"Mom, you're in my way!"
But, I'm also realistic. Annabelle can't get over things like stomach bugs or colds or other issues like most of us do. At least for a while, she'll need a little help. I think I've been a little "anti-hospitalization" for these simple things, but the last four days have knocked it into my little brain that Annabelle is going to be different than my other kids, and that's okay. It doesn't mean I'm being a Momma who brings their kid to the ER with the sniffles. (If this is you, please, I mean no offense. I'm just usually the OPPOSITE of that kinda of Momma!)

It's probably why I waited so long to take her in, cajoled the doctors on the phone to letting us try pedialite a little longer. That won't happen again, I can promise you that! Annabelle does NOT need to suffer due to my stubbornness!

That said, oh my. It is SO SO SO SO SO SO SO nice to have my daughter home!

"There. I'll smile a little if you promise to put the camera down!"
She LOVED seeing her Daddy and sisters again. Since we'd all had a bug, they had stayed away from the hospital and hadn't seen her since Saturday morning. Annabelle was quickly laughing at her big sisters and playing with all her toys. She was give out though and fell asleep early.

And she handled her feeds okay here, so I'm SO thankful for that!

Speaking of feeds, she did NOT handle them okay this morning. Our goal was to go to full-strength of her "new" formula at the hospital this morning. However, she gagged like crazy  and still had a HUGE runny stool with it. So, we switched her back to a lower strength of her OLD formula, and she's doing better (not perfect though.)

Where is Annabelle?? In her carseat! HOMEWARD BOUND!
But she's not technically getting enough calories to "grow" so we can't stay like we are for very long. The thought is it will take her belly a few days to get used to digesting food again, and we can work our way back up to full calories and then try again to switch to the other formula in a few weeks.

If that doesn't work, we'll try an elemental non-milk based formula. I am REALLY resisting that though, for a couple of reasons. Mostly, because it isn't "normal."

That might sound REALLY dumb, but my long-term goal is to obviously for her to eat normal, which means that she could drink normal milk. If we have to go "that" far from normal food, it's just much farther we will be from getting back to normal food.

Some might not agree with me in that logic. And if she doesn't handle more "normal" formula soon, I'll agree to go to the completely medical formula.

We're also going to try feeding her some thickened formula via her Gtube to see if she'll take that as well. This is trial and error though, so I'll be "playing" with this to see if it helps any. (Theory being, if it is thicker, it'll stick in her tummy and not reflux, thus causing her gagging.)

Oh, and we did NOT have the swallow study. In the end, we didn't want anything to potentially prevent us from going home today, so we are keeping it scheduled for Monday. BUT! The WONDERFUL speech therapist did get the time changed from 8:30 to 11:30 so we just have to go right before clinic instead of almost 4 hours early! This will help a BUNCH!

Thanks SO SO much for your prayers the last few days! We appreciated them SO very much!

YEAH FOR HOME!!!!

THANK YOU JESUS!!!!

15 comments:

Angie said...

Oh my goodness! She is so big! And precious. Glad that she's home again. Sweet, sweet miracle baby!

Jessica said...

Long time lurker here... I had to come out and give a suggestion as to the pukes...

Two of the other blogs that I follow ( http://patriceandmattwilliams.blogspot.com/ , and http://owensheart.com/ ) each have kids with G-Tubes. One of them is also a HLHS, and the other is a completely different disorder. None-the-less ... they each had horrid problems tolerating formula feeds after some time. By doing a blended diet through the G-Tube, they were both able to not only tolerate feeds once again and stop puking, they were able to get more than enough calories to grow!

I'm sure if you contact the Moms of the blogs - they would be more than happy to share - they've each done more than a few posts regarding the blended diet through the G-Tube!

I know what works best for one kid can mean nothing for the next (I'm a NICU nurse up here in Chicago!), but I just thought that maybe Annabelle isn't tolerating all the sugars in the formulas anymore (or something like that!)

So happy that Annabelle is back home where she belongs, and hope that you find a solution to the pukes soon - I'm sure that they are no fun for anybody!

Jess
NICU nurse up in Chicago!

Claire said...

I actually was going to post just was jess said. A blended diet would probably work really well for little miss not to mention getting whole foods and nutrients!! Formula has so much sugar :( Owens mom got a vita mix blender and is a wealth of knowledge and I am sure would be happy to answer any questions. Owen didn't eat for a while but now is!

i also feel like a huge nerd for knowing exactly what new seat you got her because i have the same one!! it is a great seat and will last a long time especially if you are rear facing past two!

Laure said...

Ditto on the blended diet. This can keep you from elemental formula and also it can be as thick as you need it to be to help with reflux. Start with just adding baby food just like you would an oral feeder.

Often kids on a blended diet can tolerate milk even if they could not tolerate formula and there are other options besides cow milk: goat milk, soy milk, rice milk, etc. Sometimes the milk is not the culprit to the intolerance. It could be the high sugar content or the corn or just the fact that it's unnatural to the body.

If you're interested you can get started with a basic blender, but if you contact the two companies: Blendtec and Vitamix one of them may donate a blender to you.

Krista Phillips said...

Thanks for the diet tips! It is one of the ideas I've been tossing around. I think I'm going to try it in little bitty stages to see how it works, and work up to it. Talked to the dietitian at the hospital about it while I was there, and she gave some suggestions about it, but wasn't too sure about the "complete" blended diet thing.

Even when gagging and vomiting, Annabelle was "growing" just fine on her formula (but now that we are down to the lower calorie, we DO need to get higher) it's just her discomfort that really hurts my heart to see.

Anyway, thanks for the suggestions! I'm researching!

Karen Lange said...

So glad to hear she is home! And what a little doll she is! Can't believe how big she's getting. Praying for you and your gang.
Hugs,
Karen

Sarah Forgrave said...

Glad you're back home, Krista! And I agree with the others...Something about those pictures has her looking so much more grown-up! So adorable.

Ashley said...

Is Annabelle off of the nasal cannula? I didn't see it in any of her pictures. Just curious!

Riete said...

So so happy you're all home again! Annabelle looks awesome!!

Hugs and prayers!!

Krista Phillips said...

Ashley... YES!!!! Well, during the day anyway. We are still putting her on at night, just on 50ccs though as when she's deep asleep, she dips to mid80's sometimes.

That is one GOOD thing that came out of her hospital stay. They can monitor oxygen MUCH more accurately than our machine at home does, so we were able to get her OFF of it during the day completely! She's been off during the day for the last 3 days!

Krista Phillips said...

Yes, she IS looking more grown up. *sniff* In morning rounds, instead of...

"Annabelle is our ____ month old infant with history of _____"

They said,

"Annabelle is our 13 month old TODDLER with history.... "

*sniff*

My baby is a TODDLER!!! (although, she has a ways to go before she truly toddles!!)

Christin said...

Annabelle looks SO cute without her nasal cannula! She's always a cutie, but now you can really see her face. You must love it! Glad to hear you guys are back home!

Keli Gwyn said...

I'm glad Annabelle is home again and doing well. It's wonderful to see pics of her looking so healthy. I'm thrilled that she's breathing on her own. So many praises today. Love that!

Lis said...

So happy to hear your household is back together again.Praying for those feeds to get better! Please pray for my great nephew* Cayden (long medical story) same baby, just a diff name..He's* got a tough road ahead also and needs a ton of prayer!

Krista Phillips said...

Lis, will be praying for Cayden!!