One of our least favorite experiences as preemie parents is the bi-monthly trip to the gastroenterologist, at which we also talk to a dietician. The conversations go basically like this:
DIETICIAN: He’s underweight. You need to get more calories in to him.
US: He’s making excellent progress with self-feeding, and we want to let that skill develop. Sometimes he doesn’t finish his meals, but we need to allow him to do that so he understands how that will make him hungry.
DIETICIAN: Then you should supplement the meals with formula through the gastric tube.
US: NO! We did that for a year and a half and it made his reflux really bad. Back then you were telling us to increase his formula which just made him vomit so much that his net calories retained went DOWN not UP when we followed your instructions.
DIETICIAN: Then when he doesn’t finish a meal, you can put the rest through the tube!
US: NO! That makes him vomit. You keep filling a kid up after he stops eating, and he’ll vomit and lose it all! And, he won’t learn that you feel hungry when you don’t eat.
DIETICIAN: Put some more calorie-dense foods in to his diet.
US: We’ve been giving him heavy whipping cream, avocado, eggs, and every dense food we can find on mychart.gov!
DIETICIAN: You should give him formula. He’s underweight.
US: NO, YOU BLANKETY-BLANK NUMBERS READER! THAT MAKES HIM VOMIT! AREN’T YOU LISTENING TO US?
Ok, so we don’t actually say that last part. And before you suggest we change dieticians, we’ve seen ’em all, and they’re all a bunch of numbers readers who talk down to you when you say you’re doing blenderized food for your child rather than that stuff Similac makes. (I think “Similac” is an unfortunate name choice because it sounds an awful lot like “ipecac,” which ironically is a syrup that used to be used to induce vomiting in poison victims.)
For some background: Our son left the hospital with a gastric feeding tube, which he still has. Until he was 18 months old, we fed him all liquids and foods through the tube. He had lots of visits with the feeding therapist in which he would make microscopic progress, and then in the course of a week, he decided he would eat everything by mouth. And that’s where we are now — he’ll (usually) eat a full day’s food through his mouth if it is pureed. Liquids all go through the tube.
And then there’s the feeding therapist.
We actually like the feeding therapist. She’s a nice lady whom Gabriel frequently asks for, and when we go to visit her, he works hard. She makes good suggestions for creating a structure around the meals in which he has limited control so that he’ll make choices and take responsibility for eating. Here’s how our conversations go:
FEEDING THERAPIST: He’s a master negotiator, and he uses that skill to control your attention. You need to set the boundaries and then disengage.
ME: I know, but then he’ll take two bites and jump up and go dancing around the table. So then I have to get in his face and make him sit down and tell him to put the spoon in the bowl each time and take a bite, which I know is a lot of attention, but it’s better than my taking the spoon myself and making him eat it…
FEEDING THERAPIST: You need to set an amount of food in front of him and tell him that once it’s all gone then he can have a toy. What would be better is if you could ignore him through the whole meal and wait for him to do the work, but I know he’s underweight and you probably can’t do that yet.
ME: Oh, don’t I wish I could do that.
As for his size: He’s growing ok, but he’s at something like the 12th percentile for weight, and the 43rd percentile for height. He’s been holding pretty steady at that point on the curve as he’s been growing. They say he’s supposed to be at the 75th percentile for height, taking an average of my height and Miri’s height. The dieticians nag us that he really ought to be climbing the curve, that is, growing more than expected, to get to a higher percentile get back on the curve to his original potential.
That last part is a little annoying for two reasons: One is that after he got to be 2 years old, they stopped adjusting for the fact he was four months premature in his growth and switched all their comparisons to term babies his age. (I could see this working for a 33-weeker, but not a 22-weeker, you clods!) The other thing is that they really don’t know what happens to 22-week preemies when they grow up because micropreemies have only been surviving since the 1980s, and the oldest ones are in their late 20s and 30s now. How do they grow? We don’t really know. They’ve got some information about what happens to them by the time they’re 5, but what happens to survivors’ brains, bodies and organs on the long term is a real mystery. I’m just hoping that indomethacin, the nasty anti-inflammatory drug used at different times both on Miri and him doesn’t give him kidney problems later in life, and I’m hopeful he’ll be able to have children of his own after the number of times they zapped him with the X-ray to check on his abdomen.
Speaking of indomethacin. It did save his life. But I bring it up now because the feeding / nutrition stuff we’re going through now reminds me a great deal of some of the trade-offs that you have to make in the NICU. For example, when Miri was in pre-term labor, they gave her indomethacin, which reduced fetal kidney function, which reduced fetal urination, which reduced amniotic fluid, which stalled the labor. After he was born, his patent ductus arteriosis remained open, and they gave him indomethacin for that, too, which worked, but it also made his kidneys temporarily fail. Let’s treat one system at the expense of another system and hope they both recover later.
Now it feels like that again — your kid is getting self-feeding skills on his own. Sorry, we need to load him full of calories instead. And we’ll send you to two specialists to give you contradictory instructions. Argh!