I believe this covers most of the g-tube questions from you guys (minus a whole thing on feeding therapy, which I will get to), but please let me know if there’s any more questions! Go back if you need the post on the basics, or the first set of questions answered.
What’s the story with her reflux? Why did the food have to bypass her stomach and how did you know it was OK to go back to it?
I mentioned in the last post, when discussing hunger, that Ellie spent some time with a tube that bypassed her stomach entirely. This was while she was in the hospital, and it’s called an NJ tube (nasojejunal, if you want to know). This is because her reflux was SO BAD, she would literally vomit up all of her formula/breastmilk if it went into her stomach at a rate greater than 15 mL/hr. (For the metrically challenged, that’s ONE TABLESPOON.) And even with the NJ tube, which meant her stomach never even had any food in it, she would still manage to retch up stomach acid several times a day. It was awful, she was miserable, and the reflux was certainly a big contributing factor towards the oral aversion that developed when she was a newborn and stopped taking bottles.
So, though she was getting the g-tube placed because she had such an aversion that she refused all oral feeds, it would have done no good at all without the second half of her surgery – a Nissen Fundoplication. It basically means that the top entrance to her stomach wasn’t keeping anything down, so it was sort of wrapped around itself to tighten the opening. So, things can go in, but they can’t (easily) come out. And it worked like a charm, so putting food into her stomach was not a problem at all. Yay! Unfortunately, for the first few months after the surgery, she would still have random episodes of gagging/retching throughout the day. It was awful to watch, but blessedly went away on its own by about 6 or 7 months old.
In theory, that means not only will she not puke up all of her formula, but she won’t puke… at all. It means she doesn’t burp. It means she can never have carbonated beverages. In reality – she manages to throw up a little every now and then, like when she had a stomach bug. Still a whole lot less than she did as a newborn, plus without all of the random dry heaves.
It was all a learning curve, but I’d say it took a few months to get comfortable with it. When she first came home, I was terrified of the darn thing. Not only for the heebie-jeebie factor, but because the surgeons had basically said “LEAVE IT ALONE” while it heals. So I was kind of scared to even go near it for a while. After our first checkup with the surgeon, maybe a month after we got home, I knew it was fully healed and got more tips on how it worked (and that I was really unlikely to hurt anything or mess it up). Otherwise, confidence comes with time and experience, right?
By nature of the fact that I’m a stay-at-home mom, obviously I do the vast majority of her feedings. But M is, as in many things, equally capable and will do whatever ones he’s at home for. The kids, well, they’re only 5. I limit their participation to fetching and carrying things. We’ve taught a handful of other people do feed her, as the need arises. And not just my mother-in-law and sister-in-law, the pediatric nurse and MD. No, we even taught my cousin’s 12-year-old daughter when she babysat for us the night of my sister’s wedding last month. She seemed a little spooked and we told her she really didn’t have to do it, we’d take care of it when we got home. But dammit, the girl was bold and fed Ellie with no trouble at all. (We paid her so well at the end of the night that my cousin yelled at me via text message.)
Truly, feeding her is not difficult. The bigger obstacle is whether it freaks you out (for instance, my squeamish mother has not done it yet). The actual logistics are not hard.
Does her lack of oral feeding impact speech development at all?
You might expect it to, but I’m not sure whether it’s had a huge impact. At just about 18 months, Ellie has a handful of words – up, hi, bye-bye, light, off, doggie, woof-woof, and a handful of others I can’t remember right now. Is she exactly where she should be for her age? No. But, frankly, I’m not sure there’s any aspect of her development that’s exactly age-appropriate. That said, I’ve known plenty of less-complex-needs kids who have fewer words than she does at this age.
So, chicken or the egg? Are her delays interconnected because one influences or detracts from another, or because they’re all connected to some underlying-but-nameless condition? Who knows. But while you might expect an oral-aversive kid to have oral-motor and speech issues, I frankly don’t think they’re nearly as bad as they could be.
What is the biggest challenge? What are the up-sides?
The biggest challenge is not the tube itself. Like anything, I’ve learned how to use it, so it’s just one part of my daily routine, and not a particularly difficult one at that. I think the biggest challenge is the unknown – how on earth do you teach a kid to eat? How long will it take? Am I doing it right? Will she ever be able to eat normally? What will her development look like as she gets older? That’s the hard stuff, not the tube.
The up-side is that I always know she’s adequately nourished and hydrated, since I’m the one who put it into her stomach. I don’t have to fight with her to take medicine if she needs it – it just goes into the tube. Technically, she doesn’t even need to be awake to be fed. So, if something funky happens with the day’s schedule, or she’s sleeping off a stomach bug and I want her to get some Pedialyte, or if we just have to be in the car when she needs to be fed – no problem.
How do people react when they notice the tube? Do you spend a lot of time explaining? How do Rebecca and Daniel respond to the tube? Do they think it’s something special and cool about Ellie, do they not notice? Are they jealous in some way?
Yeah. I live in New England. While Yankees have a reputation for being cold, what they really are is private. Minding one’s own damn business is a major virtue up here. Which means: nobody says a thing. Like, ever. No one over the age of maybe 5 or 6 has ever simply seen me feed Ellie and directly asked me what I was doing. And it’s not as though I hide anything. I mean, I suppose I’m relatively discreet, but I certainly don’t leave the room or put up some kind of barrier.
Every now and then, after someone has interacted with Ellie a bunch of times, and maybe after I’ve brought it up in conversation or said something in passing, someone will ask me a question. But it’s very infrequent. Nobody wants to intrude, nobody wants to stare. And I understand. While I, personally, am more than happy to answer questions and explain what’s going on, I know not everyone feels the same way. I wish no one felt ashamed of it, like they had to hide. But it’s not up to me to dictate how anyone else feels, so there it is.
The big kids… I don’t exactly know how they feel about it. I mean, we’ve always explained what was going on with Ellie, explained what the tube is for and what it does, all of that. It does not appear to stress them out in any way, it’s mostly seems like a non-issue. I am sure that they notice it as something different about Ellie than other babies, but to them it seems as though it’s just… different. Not good or bad, just different.
Or, at least, I think that’s the case. I haven’t specifically sat down and asked them how they feel about it, but they appear to have taken it all really well in stride. Have I mentioned recently that they are really awesome kids?