Hooray for progress.
And yet, it makes everything
Ellie has made, by our standards, some really great progress in the last few months with our new feeding therapist. Back in August, she was just barely starting to show interest in bringing foods anywhere near her mouth. Now, if she’s in a good mood (and adequately entertained with toys, and the adult in question is feeling particularly persistent), we can get anywhere from 1 to 3 ounces of actual food into her. I’m talking yogurt and thicker baby food purees, not a hamburger, but still. It’s a big step forward.
But now, it’s time to get serious. Up to this point, a lot of what we’ve been doing has been just experimenting with flavors and textures and the simple sensation of having something in her mouth. In a sense, no pressure. Just playing around. But now that she will actually consume a measurable amount of food by mouth, we need to start pushing to see what she’s capable of.
The first order of business is to reduce her daily intake of formula. Not just so that she won’t be over-fed with the additional calories of yogurt, but in the hopes of getting her to experience real hunger for the first time since she was a newborn, further hoping that it will motivate her to eat more readily. But it’s not just an even reduction across the board – if we are taking 100 calories of formula away, we’re going to take most or all of that away from the feeding prior to any attempt at feeding her by mouth. Again, in the hopes that she’d get good and hungry. That adds an element of planning ahead that is a little tricky in our current modus operandi, but OK.
In the meantime, the nutritionist wants us to switch to a different type of formula now that she’s older. That’s fine, but the new formula (really, just Pediasure) is much more calorically dense than the old one. Which means she requires a smaller volume to get the same number of calories per day. That’s also fine, except that it means formula intake alone is no longer enough to keep her adequately hydrated, so I’ll also have to give her supplemental water – through the tube, because she doesn’t really drink it yet. Yet another thing to keep track of.
Oh, and the actual “feeding” part of feeding therapy is no walk in the park, believe me. It’s incredibly slow and enormously frustrating for me. Ellie doesn’t much love it, and some days she’s especially toddler-rific and just ain’t having it. It requires a lot of distraction and entertainment and coaxing, and even then, I can never manage to get as much into her as the feeding therapist does. So, you know, no pressure to get those calories into her that you’re taking away from her formula or anything.
I said to M, this is like potty training on a much larger scale. Yeah, it’s nicer and easier to have a potty-trained kid than to have one in diapers. But the PROCESS of getting from point A to point B… wow, does that suck, and makes you (temporarily) wistful for the easy days of diapers. Same thing here, but it’s going to be a lot harder and take a hell of a lot longer. Yes, obviously I want Ellie to get to the point of being able to eat and drink everything she needs without the tube. But the fact is, the current usage of the tube is actually pretty easy. We’ve got it figured out, it fits into our lives. This in-between, in-progress phase? Exciting and all, but holy crap is it going to suck for a while.
(And, by “a while,” I’m guessing probably two years, if all goes well. In case you were wondering what kind of pace we’re talking about, here.)
I’m still waiting to get the new formula from our medical supply place. Nothing about that is ever easy – the complex-care pediatrician has to check the nutritionist’s notes and call in the “prescription” before I can order a month’s worth. But once it’s here, I think I will literally have to write out our daily feeding regime and have that thing laminated and posted in the kitchen. No more auto-pilot for me.