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Monday, April 7, 2014

The Big Tube Wean: Week 8

Wait, what? We've been at this for almost 2 months?!

Before we began tube-weaning Brenna in February, I was skeptical about how she could possibly keep up with her nutritional demands. Her body uses up all of her calories to make (too much) skin, and she needs an insane amount of calories to grow.

Well, now I know. She literally eats almost all day.

Brenna is still not a breakfast kind of girl, which is fine…because she makes up for it later in the day.

I am so relieved that she has now a decent amount of go-to foods that she will always eat - mostly meats like pepperoni, sausage, turkey, etc., but also crackers and Goldfish - but now our challenges are turning toward trying new foods. She is a stubborn 2-year-old…enough said.

One of our biggest struggles has been the fact that if Brenna refuses to eat what we're eating or what we originally give her, we scrounge around until we find something else she will eat. Our biggest priority, of course, is that she eats. However, it's really difficult to explain to your 4-year-old why his sister gets to eat summer sausage instead of the casserole, but he can't have a second option.

These are topics we're discussing in our weekly feeding therapy session, and we're getting close to being able to be more strict with pushing her to try new foods and not reverting back to her favorites all the time.

We are also, at the advice of her therapist, starting to simply expose her to more foods…even if she won't take a bite, we leave fruits and other foods on her plate. She is beginning to "kiss" some non-desirable foods for us, which is the next step in tolerating and trying new foods. And we're been excited to see that within just a week or two of leaving new foods out on her plate and getting her to kiss them has led to some bites of new foods - for example, steamed broccoli (that was then gobbled up), crackers with hummus, and green beans (dipped in ketchup, she ate a few).

Though in the first few weeks, Brenna wanted very little to do with fruits and vegetables, we've been seeing some success with those foods - some bites here and there, and enjoying home-made smoothies packed with produce. She doesn't seem to like sweet flavors (except chocolate, but come on, it's chocolate), but she has been diggin' on smoothies that have more of a vegetable taste.

After some smoothie success, last week I whipped up a few home-made squeeze pouches with our Infantino Squeeze Station. The bonus of home-made, besides being fresh and more nutritionally sound, is that I can add oil to it for more calories :)

Apples and carrots for the lady...

Our biggest triumph is that while Brenna's weight dipped way down, she never hit her maximum weight loss number…and verrrrry slowly, we began to see her scale numbers rise! We then got to the point last week where we got the exciting news that we could cut back her tube feeds even more! Now, she is getting a very small tube feed in the morning, a cup of water in her tube in the afternoon (just to ensure she doesn't get dehydrated, because her skin makes it easy for dehydration), and a full tube feed at night after dinner.

It has been a huge learning curve - even though oral feeding is obviously the natural course of action, it was not Brenna's normal, and so we've been having to figure out a new normal for her again. But every time I get to order her nuggets at McDonald's or fill a bowl of crackers for her while on a play date, instead of packing up the feeding tube and syringe if we have to leave the house during feeding time, I revel in that new normal.

I am so proud of my new big eater!

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4 comments:

  1. I'm glad that everything is going so well! What a blessing!

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  2. I'm so glad she is doing well! Here is a post from another blog I read where she talks about the behavior management part of introducing non-prefered foods (there is a part one and part two) http://www.confessionsofthechromosomallyenhanced.com/2014/02/freedom-from-g-tube-dependency-part-1.html?m=1

    I know you have therapists involved, I just thought this mom had a great way of describing how things went for them:)

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  3. She is looking so less "baby" in her face and more "toddler." Go, Brenna, go! Happy for you that she is eating. I can understand the difficulty in being so nervous that she DOES eat, that you find anything she WILL eat when she won't eat what you are serving. That really would be hard to explain. With my 4 kids, it's you either eat it or do without, but you really can't be that way with Brenna. Sounds like she's delving out a little more, though, so that's good!

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  4. Yay! That is awesome news! So proud.

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