Overcoming a micropreemie’s feeding delays, one microstep at a time

August 30, 2018
Boy eating macaroni, micropreemie, NICU, feeding delays

Macaroni and cheese at a restaurant! First time he’d ever asked for that.

Sometimes when you’re trying to get your former micropreemie to advance with a life skill, it pays to try something weird. For example, putting banana in your ear.

I brought his favorite stuffed toy, Blue Bear, to the table and made him say, “I’m going to chew banana pieces. I’m going to put them in my right ear, because that’s how you chew.”

“THAT’S NOT HOW YOU CHEW!” Gabriel bellowed. He is six and has been stuck on purees since he was 18 months old. Prior to that, he’d received all his nutrition through the g-tube.

“Then you show me how to do it,” Blue Bear asked. And Gabriel did. Next, Blue Bear tried to put the food in his nose and his eyes, but was educated. Over future meals, Shark would try to put it in his gills, Dragon would try using the scales on his back, and Whale would try his blowhole, and Rabbit would try to hop on it, but each time would be taught the right way to do it. (I never thought the high number of stuffed animals we own would turn out to be so useful.)

Prior to Blue Bear’s ear game, we’d tried something else weird: mixing liquid asthma medication (the kind meant to be put in a nebulizer) with Splenda to make a slurry and having him drink it. This was what the new gastroenterologist had prescribed, and boy, was that one confused pharmacist, going over the directions with us while handing us a box of Pulmacort that said “DO NOT DRINK.”

The reason we gave Gabriel a liquid steroid was to treat what the doctor believed was eosinophilic esophagitis, an inflammation of the throat that can make it uncomfortable to swallow. How this all worked was quite confusing to me, and if you go to Wikipedia to look up the condition, you’ll find the phrase “not well understood” twice. I don’t like experimenting on my child, but the doctor talked us into it, and we started the medication.

Over the next week, I offered Gabriel small pieces of cut fruit at meals, and I was shouted at, punched, and had things thrown at me, which wasn’t that different than what had been happening for the past three or four years. I tried bringing Blue Bear to the table to race him in eating pieces. Nope. I offered to bring out the battery-powered Brio train engine that I ordered in the mail specifically to use as a reward if he chewed five small pieces of banana or mango. Same meltdown occurred.

You’d think chewing and swallowing are the simplest things we do, but they aren’t. I’ve had my attitudes on that topic challenged again and again since Gabriel was born at 22 weeks and 6 days of gestation. The on-duty neonatologist was recommending against resuscitation, and my wife asked me what I thought.

“We have to think about quality of life at some point. If we’re talking about someone who can never swallow, it might be worth letting nature run its course,” I said. I’ve been humbled ever since then for putting the worth-it / not worth-it line there that day.

As Gabriel’s four speech-language pathologists have pointed out numerous times since then, chewing and swallowing are the hardest tasks we do each day, even if most of us do it unconsciously. And the causes of a feeding delay can be a sneaky combination of factors that are difficult to find and treat. It could have to do with the feeling of food in his mouth, the movements of chewing and swallowing, fear and anxiety, or perhaps discomfort in the esophagus or stomach.

Gabriel’s made microscopic progress with his current therapist, taking a year to go from turning purple and vomiting when having a tiny piece of fruit on his tongue to being able to swallow it most of the time. We couldn’t even call the progress “baby steps” because a baby would go so much faster. Our therapist has provided great help, but recently she’s been promoted to Children’s Therapy Center Director, and it’s difficult to get an appointment. (Good for her, but argh!)

More recently, Gabriel has made more dramatic progress, which we attribute to the combination of the steroid and Blue Bear’s antics. On the Fourth of July this year, we were in a restaurant and he asked the waitress for macaroni and cheese for the first time in his life. And took eight bites. Each bite was half of a noodle, but we still had to pull out the camera, take pictures and send them to the grandparents.