Our son has a feeding tube, can eat some food by mouth and is very slender. The doctor and dietician call him “underweight.” We want him to eat on his own and gain weight. These two desires often run in opposite directions. We’d like to let him get really hungry when he doesn’t eat and wait for the hunger to make him take care of himself, but that’s going to cause weight loss with a kid who’s got delays with feeding ability. You may remember I posted earlier about this in a post called “Feeding therapist vs. dietician vs. parents vs. toddler. A rant.” This is a continuation of the stuff going on there.
We have to choose our crutch. They are, briefly:
1. Bossy / encouraging Daddy for 30 straight minutes.
2. Wait for him to self-feed; tube the rest.
3. Bargaining. I’ll draw a picture of whatever you want if you take a bite.
4. Distraction by toys.
5. Distraction by television.
We had thought that method number one, bossy/encouraging Daddy was the best because it involved his hand on the spoon for the maximum amount of time with a little bit of assistance from me. But, after a couple of weeks, he started getting steadily less and less cooperative. We thought it was just typical toddler control stuff. The feeding therapist and occupational therapist asked us to make a video of a typical eating session at home, and they looked at it and said, “Your child is showing huge numbers of anxiety and defensiveness signs.” And, they asked us to not verbally push him to take a bite and thought maybe anti-anxiety drugs might be the next step.
The sensory issues: Our micropreemie spent five months in the NICU, two of which involved very uncomfortable things on his face and in his mouth, and another two with mildly uncomfortable things. This can mess up a child’s ability to process sensory stimulation, which is probably also the reason he only eats purees and is unwilling to chew.
So then, we need a different crutch. Which one?
Number 2, tube the rest. We absolutely hate this one because we spent a year and a half totally dependent on the tube with frequent vomiting. It feels like you are inflating your child like a bike tire.
Number 3, bargaining / negotiating with the child. That is, bring out his favorite toy and tell him he can have it if he’ll take a bite. Then he’s got the toy and no longer has a motivation to take a bite. Take it away and he’ll melt down and throw food. Or, bring out the Doodlepro sketch pad and tell him you’ll draw whatever he likes if he takes a bite. You’d think this is a great way to start, and then you can withdraw the bribes slowly as he increases consumption. No. He wants his darn picture and he knows when picture production has slowed… in short, he is too good of a negotiator to make this work.
Number 4, distraction by toys. This is when you let him play with whatever he wants and you put the spoon in his mouth. It has the advantage of not being the tube, but he’s not really doing anything.
Number 5, distraction by TV. Put on Disney’s Planes: Fire and Rescue for the 127th time. Child’s brain shuts down, passively opens mouth for whatever you feed him until he barfs. Also nice that it’s not the tube, but again, he’s not really doing anything.
At present, we’ve gone back to crutch number 2, tube the rest, in the hopes that the reduced opportunities to interact with the parents (and negotiate with them) will dial back some of the tension and get him to eat at his own pace while other family members are eating their own food. And then 20 minutes later, we inflate him like a bike tire. Often he throws up.
We hate it. But, it’s providing his basic nutrition needs. He has an appointment on Thursday with the GI doctor and dietician. We hope he’ll show some weight gain on those darned growth charts and get them to quit nagging us about his weight. Then, we’ll try a one-day hunger trial (that is, you do the work, and no tube supplements) and see if that gets us anywhere when we’ve got a while to recover the lost weight before the next appointment with doctor and dietician in two months.