OK, onto the next set of questions! I’ve tried to group them together thematically. I won’t get to all of them today, but it’s a start. [If you missed the post on the basics of our feeding setup, check it out.] Here we go!
What is she fed / how much / how often / how do you know how much to feed her?
Ellie gets regular, over-the-counter formula – Similac Go & Grow, if you really want to know – though we get it every month from the medical supply company, so it’s covered by our insurance. Total by-the-box preparation, no added calories or anything. We see a nutritionist regularly to track her growth and adjust the amount as needed. It has been a slightly tricky in that Ellie seems determined to be very, very short. So, when the doctors in the hospital insisted she be on high-calorie formula before she came home (oh, how they LOVE high-calorie formula in the hospital!), she had absolutely no trouble putting on weight. She rocketed up to the 50th percentile for weight, but OOPS, remained below the first percentile for length. So the nutritionist helps us find a balance wherein she’s getting adequate nutrition and hydration, but not over-feeding for her shrimpy frame. There’s a lot of math and plotting points on various charts and curves, I mostly just program in the amount the nutritionist tells me to. We’ve now got her a little more synced-up, so even though her height is still below the first percentile, at least her weight is now hovering closer to the 10th, so she no longer looks like a sweet, curly-haired potato.
At the moment, she gets about 7 ounces of formula each time (220 mL, if you want to get really precise), five times per day, which works out to be every three hours during the day and nothing overnight. She gets “bolus” feeds, which means that each feed runs over a relatively short period of time (in her case, around 20 minutes). Some tube-fed kids need to be fed extremely slowly, or even continuously for most of the day, but she tolerates the bolus feeds just fine. The every-three-hour schedule is mostly habit, I think. I suppose I could try to switch it around to four feeds per day every four hours, but this seems to work well.
Does she ever indicate that she’s hungry? Does she show any interest in food?
Short answer: no. There’s certainly no noticeable change in her behavior as it gets close to time for the next feed. I don’t think she has demonstrated hunger since she was about three weeks old and they first gave her the NJ tube that bypassed her stomach and dripped the milk straight into her intestine (in an attempt to deal with her epic reflux). She was wicked cranky that first week, because I think she was constantly hungry. But it faded and I’m not sure she’s been truly “hungry” since.
The closest we get to her “noticing” that she has an empty stomach is how she sleeps. For instance, we typically do the last feed as she’s going to bed. Except, sometimes the timing of the day is off and that last feed gets pushed back later than usual and maybe… ahem… maybe we sorta-kinda forget to push “go” on the pump. And then wonder why on earth that kid isn’t asleep yet. Happy enough, but not asleep. Oh. Right. Whoops. Forgot to feed her. Sorry, kiddo.
In general, her only interest in food is that it’s something she can grab and throw onto the floor. She is *just* starting to mimic eating and bring things towards her mouth and lick them, but it’s nothing like the typical baby/toddler who screams if you don’t share every bite of your food with him. Remember: she has absolutely NO association between food and mouth and taste and full stomach. NONE. No concept. All she knows is that if something is loose in her mouth, it’s scary and unknown and makes her gag. It blows your mind if you think about it.
What’s the prognosis for her learning how to eat? Will she have the tube forever? If/when she does decide to eat on her own, how does the tube come out?
I won’t get too much into the feeding therapy stuff at the moment – that’s a whole separate post. But suffice it to say that our new feeding therapist (seriously, a WHOLE ‘nother post) said that, barring any physical barrier to her being able to swallow or other medical/physical/mechanical obstacle, expect it to take at least a good two years to teach her how to eat. That’s two years from right now, not two years old. Yeah.
I have no idea what the future holds, but I’m working under the assumption that she will eventually learn how to eat and drink, and will eventually not need her g-tube anymore. When that happens, they’ll leave the button in for probably a few months, just to be really sure that she’s able to take adequate nutrition by mouth. Then, we’ll just take the button out and cover the stoma with a bandage, and see if it closes on its own like a pierced ear. If not, they’ll briefly put her under anesthesia at the hospital and stitch it closed. I can only imagine there would be a scar left behind, but nothing too bad.
A slight aside – when the hole for the tube was first created and the button put in, those layers of tissue (skin, muscle, stomach, etc.) all sort of sealed together at that spot when they healed. So even though the hole can be closed, in that particular place on her abdomen, the side of her stomach will always be sort of fused to the muscle/skin/tissue right there.
If, for some reason, she is never able to take enough food by mouth, or if it takes her an exceedingly long time, she can theoretically be fed this way indefinitely. There are plenty of teenagers and adults with feeding tubes out there. I’m hoping Ellie won’t be one of them, but you just never know.
Does she sit still when you feed her? Does she pull/mess with her tube?
Yeah, it was a LOT easier to feed Ellie before she was mobile. She’d sit mostly still, or would be content in a bouncy seat, and there she’d stay for half an hour. NOT SO MUCH ANYMORE. Now, feeding her means I have to keep her contained. When we’re on the go, she’ll be strapped into her carseat or stroller. If we’re at home, I typically put her in her high chair in the kitchen. Not only does it keep her in one place, but I’ll sometimes work on some feeding therapy while she’s there, which tries to connect the feeling of a full belly with the kitchen and food and all of that. Or, as when we were on vacation a few weeks ago and I didn’t have easy access to any of those things, I almost literally chased her around with the backpack for 20 minutes as she crawled and climbed stairs while being fed. Believe me, she had no interest in sitting quietly on my lap for more than about 10 seconds at a stretch.
She does mess with the button and tubing, though not too much. I wonder if the button is a little itchy sometimes, or if it’s just a curiosity, but I am glad for our taped-down gauze setup so it’s harder to really grab. And if the actual tubing is in sight, she’ll definitely grab it and swing it around and otherwise threaten to yank it and make a giant mess. It’s a blast.
Alright, that’s enough for today. Keep up the questions if you have them, and I’ll keep writing!