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Wednesday, December 28, 2011

Anticipated decrease

Kids are so predictably unpredictable, aren't they? Here's how Raya's calorie consumption has gone this week:
Monday: 260 calories
Tuesday: 170 calories
Wednesday: 129 calories
I don't know if it's realism or pessimism but I had expected her to have a decrease after her big 260 calorie day on Monday. I was a bit disappointed with how little interest she had in eating a Nutrigrain bar this morning after doing well with them 2 days in a row. Thanks to my handy little digital kitchen scale that I bought yesterday, I discovered that she only made about 6 calories out of 120 disappear, and I'm not sure that they actually made it into her mouth. Such if the life of a tube-fed kid. Some days are great and some, not so much. Today her calories came from Chicken In A Biskit crackers and Greek yogurt and a tiny nibble of Nutrigrain bar.
BUT. I did do pretty well with the real food through the tube part today though. :) I made my grandma's minestrone soup for dinner and plugged the recipe into a website that allows you to calculate nutrition information, so I was able to put some of that in the ol' Vitamix to feed to my Raya girl. It was actually kind of cool. This year I'm making my first attempt at growing a winter garden. Some of what I planted has failed miserably (i.e. butternut & acorn squash, cabbage, pumpkin, & some of the lettuce) but some of it is doing really well. For the soup today, I used spinach, a turnip, and green beans out of the garden. There is just something cool about walking out the back door and picking something that's ready to eat. :)
Anyway, I put some of the soup in the Vitamix with some Gerber mixed grain baby cereal for added nutrients and calories and ended up with a thick orange goo that smelled good enough to eat. :) Here's what it takes to feed her when we do blenderized food:

I thinned it out with formula (for additional calories) and fed it to her. For as sensitive as her stomach used to be to volume and feed rate, she sure seems to have an iron stomach now. We syringe the food in rather than using the pump or gravity, and she throws a fit if I don't let her help, so sometimes it goes in pretty fast. (side note, I'm not one to give in to fit throwing but when it involves syringes full of liquified food that you don't want being squirted all over the kitchen or vomited back at you, it's a bad idea to fight back. :) When I give Raya blenderized food, I use a bolus extension because the tube is a bigger diameter than a regular extension so it's easier to get thick pureed food through it. The one in the picture is a 24" tube which makes it easier to keep it away from grabby little hands, but the 12"ones work fine for us too. After all the food is in, I flush the tube with an ounce or two of water. That's the part that makes me nervous because I'm always afraid I'm going to overflow her. :)
After all was said and done, she had 129 oral calories, 195-ish from the blenderized food, and the rest from formula. Not too shabby. We're getting closer to the goal we set in October of having 350 calories from food. Hopefully tomorrow she'll eat a little more of something. I need to find something else that she'll eat!
One of the questions I get asked quite often is how long Raya will have her G tube for. My response is usually a half-joking, "We'll be happy if she gets it out by the time she goes to kindergarten." Sometimes on days when she's having bites of a lot of food and eating her sour cream, etc, I start to think there's a light at the end of this feeding tube tunnel. Then on other days when she's not letting anything in her mouth, I can't help but wonder if my semi-joking kindergarten response will be attainable or not. It's hard to imagine yourself on top of the mountain when you're standing at the bottom of it. Raya is a little firecracker though, and I think that someday she will decide she likes to eat food and the rest will be history. :)
**Morning update: let's just say the vegetable-laden soup plowed through her like a freight train and there will be a couple extra loads of laundry today. Oh well, at least she didn't puke, right?

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