One of the strangest part about having a kid who is fed exclusively by g-tube is how removed hunger is from the entire equation. I don’t time her feeds based on when she seems hungry, I do it by the clock. I don’t increase the amount she gets because she’s finishing her bottles faster, I do it because a doctor and a mathematical formula tell me to. Honestly? I have no idea if she ever feels hungry.
When I stop to think about it, it kind of blows my mind.
With my older kids, I have really wanted to make a point of letting them listen to their own bodies to know if they’re hungry or full. I have my own life-long issues with food, and I’m hoping their relationship with it can be a little better than mine. I didn’t go to great lengths to get them to finish their bottles as infants, but when I saw they polished off a quantity with ease, I might start pouring larger amounts. I don’t insist that they clear their plates at dinner. If they tell me they feel full, they are welcome to be excused from the table. If they’re still hungry, they can have more.
Ellie is a different thing, entirely. She was sent home on one quantity, which we stuck with too long and her growth slowed down. So we upped it, somewhat dramatically. Her weight gain took off. Everyone was happy, they love to see a baby gain weight. Hooray, weight! Except… she’s quite small, length-wise. She comes in under the first percentile for length, yet she’s close to the 50th percentile for weight. I know everyone loves a chubby baby, but I couldn’t shake the feeling that we’re basically (gently, and with all good intentions) force-feeding her. Way more than her body might actually want. While she doesn’t protest her feedings in any way, I will also point out that I have (twice, oops) forgotten a feeding and done it more than an hour and a half late. She didn’t make the slightest fuss, could have cared less. Weird, right?
To add to the confusion, we see so many darn doctors, no one quite wanted to take the lead on telling us how much to feed her. Finally, this week, we had our first appointment with the Pediatric GI doctor. Finally, someone who was willing to make the call on weaning off of the high-calorie formula. And while Ellie technically gained the exact amount of weight “they” like to see for a baby her age (30 grams per day for the last month), the fact that she isn’t getting taller at a comparable rate would seem to suggest that maybe her body just doesn’t want to grow that fast. So, we’re backing off a little (don’t want to overreact, obviously), and will check in again in a month.
We also finally had an appointment with someone from the Feeding Team, a Speech-Language Pathologist who has seen Ellie since her first swallow study. Unfortunately, once it was decided that we were taking the surgery route, the behavioral side of the feeding equation was all but dropped. We were more than two months post-op before actually seeing the SLP, who was clearly disappointed that we’ve made no attempts at oral feeds in all that time. Not critical of me, exactly, more frustrated that the ball had been dropped in all of the medical hoopla.
Believe me, I am frustrated, too. The thing about having a baby in the hospital, especially for an extended period of time and one who comes home with unusual needs, is that it’s easy to find yourself in a very passive position as a parent. You’ve gotten so used to the doctors being in charge, you just assume they’re going to continue to tell you what you need to do, when you need to do it. The truth is, doctors and hospitals have lots of patients, and are not going to have the urgency about your own kid that you wish they would. That’s not really meant as a knock on our many wonderful doctors. It’s just the simple truth that you need to be a squeaky wheel if you want anything done in a reasonable amount of time.
All of that is to say that I went to Target and bought a few bottles today. Starting this weekend, we will be (re-)introducing Ellie to bottles. Every day, I’ll put a couple of ounces of thickened formula in a bottle and give Ellie 10 minutes or so to do with it what she likes. At this point, she has pretty much lost what was once an unconscious reflex to suck and swallow. She has to learn it all over again. So when I give her this bottle, I have zero expectations. She can chew on it, she can push it out of her mouth, she can chew on it some more. The first goal is to simply get her used to this strange thing being in her mouth, to try to make it a familiar and comfortable feeling. She’s got a rather sensitive gag reflex, so it’s all about going slow and keeping it positive.
It’s going to be a long, slow, probably immensely frustrating road as we work towards “normal” eating. I don’t know whether we’ll ever get there, or if we do, how long it will take. But it at least feels good to take some first steps.