When people ask me what’s wrong with Eleanor, why she’s in the hospital, I stumble a little bit. I say “um” and “well” a lot, before finally coming up with “she doesn’t eat.” That is simultaneously true, and completely NOT the whole story. I mean, the feeding stuff is what keeps her admitted to the hospital instead of at home, so that’s the big focus for now.
But even that single piece of the puzzle is a little hard to explain. In a nutshell, she has never taken feeds well by mouth, and was aspirating liquids when she tried. In addition, she has extreme reflux, which makes it darn near impossible to keep much of anything in her stomach (and is also a nasty deterrent any time she tries a bottle – it all comes right back up). So, she no longer takes anything at all by mouth, and is tube-fed straight into her intestine, bypassing the stomach. To that end, she is having surgery on Monday. She’ll have a g-tube placed to deal with the fact that she can’t feed adequately by mouth, as well as a procedure called a “fundoplication” to tighten the opening between the stomach and esophagus, to deal with the reflux. I can barely express the degree to which we tried to avoid the surgical option, but here we are. At least it’s a ticket home. I’m sure I’ll have plenty to say about life with a g-tube baby in the weeks and months to come.
After all this time and the unbelievable number of tests she’s had done, Ellie has no single, consistent, comprehensive diagnosis. She remains, for the most part, a collection of unusual symptoms and characteristics. Now with a few inconclusive test results thrown in. While the feeding problems are our current focus, it’s entirely possible that they are simply a symptom of something else.
One of the things the doctors picked up on from day 1 is that she has very low tone. Not in the extremities – her arms and legs move pretty well and are reasonably strong. No, she has low tone in her trunk. Even as a one-day-old newborn, she couldn’t pull her head up the way you’d expect an infant to do. That is still the case at two months old. While most babies are starting to gain some control over those big noggins of theirs (and Ellie’s is bigger than most), hers still flops backwards alarmingly and is only showing slow, small improvement. Is the feeding trouble related to this? Maybe, since the low tone also seems to affect the smooth muscle of her organs (like the stomach). Sure. Possibly. No one can or will say anything definitive.
The low tone seems to (maybe? we think?) be a neurological issue. Or maybe a genetic one? Let me tell you something about genetics and neurology – these are two specialties that like to run LOTS and LOTS of tests, and then say, “well, we’re not sure. We’ll just have to wait and see how she develops.” Yeah, that’s the best I’ve gotten over the last two months. Of all the tests, she had two come back with some kind of abnormal result. She had an MRI that showed “simplified folding” in her brain, but neuro is hesitant to say what that might mean. And she had a chromosomal study that showed a duplication in one small piece of one chromosome. Genetics, shockingly, is also hesitant to make any grand statements. Both departments, however, are fascinated by Ellie and want to follow her as she grows. Lucky us?
The area affected in the MRI result might relate to gross motor or cognitive development. Maybe. The genetic duplication has shown some correlation to Autism Spectrum disorders or developmental delays. But we all remember the first lesson from statistics class: correlation does not imply causation. It’s possible our entire family has the same duplication, and you’d never know if you didn’t have this test done. Also, the two test results are not necessarily connected to one another.
I’m sorry, am I being vague? Well, yeah. Welcome to my world.
All I want to know is how this is going to affect my kid, and what that will mean for her life. But, absent a crystal ball, no one can tell me that. My hunch? I think we will see developmental delays, but I have no idea in what areas or how dramatic. Will she walk at 9 months, at 19 months, or not at all? No idea. Will she have a feeding tube for six months or six years? No idea. Will she talk or read or do multiplication or make jokes? No idea.
She’s a big question mark. I suppose you could argue that all babies are, that you never know what you’re going to get until it happens. But when you start out your life with more than two months in the hospital, surgery, and a feeding tube, when you know you’ll need physical and occupational therapy from the moment you get home, and when neuro and genetics find you “interesting?”
Yeah, we’re in for a wild ride.
But let me not forget what is right with my sweet girl. She is generally pretty mellow, and when she gets upset she is relatively easily soothed. She sleeps for nice stretches of time, even if those stretches are happening during the day instead of at night for the moment. She looks right at you, and if she’s interested, will track with her eyes and move her head to follow an interesting sound (or that pretty baby in the mirror). She passed her hearing test. She likes to chew on her hand. She’s incredibly snuggly. And if you’re lucky, she’ll give you her sweet, sly smile.
Oh, the smile. It’s elusive. It’s fleeting. But both my mom and my friend swear they saw it a few weeks ago (while I was in another room pumping, of course). My husband saw it the next day. It took me a while longer, but I’ve seen it myself. Not just the one in her sleep, and not because she’s got gas. A real, honest-to-goodness social smile. Not only is it a beautiful thing to see on her sweet face, but dammit, it’s a milestone. Right. On. Time.
Ellie has her own plan. I just wish I knew what it was.