At a round table in a small treatment room, Tony Diehm sits between his twin sons, Ian and Isaac, 5, and coaches them through their noon meal.
“Good start, good start! Good job, Ian. Swallow. Now do the next one,” he said.
“I want to see you chewing.”
Using sturdy plastic spoons, the brothers scoop bites of mac-and-cheese and pureed peaches, though it’s clear they’d rather chatter about Hot Wheels cars or dinosaurs than take a bite.
To keep them focused on eating and drinking—and reward their cooperation—Tony shows the boys bits of a monster truck video on his iPad.
When it’s time for the next bite, he lays the tablet facedown.
“Keep drinking, keep going,” he said. “Your brother’s almost done.”
Before their 20-minute countdown timer beeps, both boys have finished their lunch.
Success. High-fives all around.
Isaac and Ian, bright boys with playful grins, are alumni of the Spectrum Health Helen DeVos Children’s Hospital Intensive Feeding Program.
They completed the specialized program in June 2018, but they still return to the clinic four times a year for a progress evaluation.
For members of the feeding therapy team, observing a meal lets them assess the brothers’ eating behaviors and recommend steps that their parents, Tony and Erin, can take to advance their feeding skills and diet.
Today’s recommendations: Add more calories to the boys’ pureed foods, expand the variety of flavors they encounter and add a second table food to each meal—things with chewable textures like cheese chunks or soft fruit.
These changes will keep the boys moving toward the goals of steady weight gain, better self-feeding skills and more natural family mealtimes.
The Diehms are making steady progress toward these targets, said Lynn Fagerman, PNP, the program’s nurse practitioner.
“Considering where they were when they started—you’re about a year and a half out of the program—I think they’re really coming along as we would expect,” she told Erin and Tony, residents of Big Rapids, Michigan.
“That’s huge progress.”
Rough start in life
The Diehm twins were born in July 2014 at only 26 weeks, when Erin went into preterm labor.
She gave birth at Spectrum Health Big Rapids Hospital, with the boys—each weighing just over 2 pounds—soon transferred to the NICU in the Gerber Foundation Neonatal Center at Helen DeVos Children’s Hospital.
They ended up staying five months.
Like most preemies, these two had their share of challenges.
Isaac had a congenital blockage in his small intestine that required multiple surgeries to repair. For half of his first year, he lived with an ostomy pouch and received nourishment intravenously via a method known as total parenteral nutrition.
Ian’s issues had to do with breathing. Because he had trouble weaning off a breathing tube, he went home with a trach tube and needed multiple surgeries in his first two years to have his airway rebuilt.
Though he learned to eat orally, he later developed severe reflux and went back on a G-tube after his first birthday.
“We’ve had about every version of a feeding tube for a pediatric case,” Erin said.
When the boys turned 2, it came time to begin shifting away from tube feedings. Their parents enrolled them in outpatient feeding therapy programs in both Grand Rapids and Big Rapids.
The point wasn’t necessarily to get them eating but to simply introduce the smells, flavors and sensations that come with taking food by mouth.
“It was more about desensitizing them. We were working with different textures and stickiness, having them touch pudding or having it on their lips without gagging,” Erin said. “Initial steps.”
The process laid a good foundation, but after a year or so, the boys’ progress stalled. The family needed a new way to overcome Ian and Isaac’s oral aversions.
That’s when the neurodevelopmental pediatrics team at Helen DeVos Children’s Hospital referred them to the Intensive Feeding Program for evaluation.
Progress from Day 1
In April 2018, just before the twins’ fourth birthday, they entered the day treatment program—eight weeks, 40 hours a week, with a parent or other caregiver participating each day with each child.
It’s a big commitment for any family and twice the effort for a family with twins. Coordinating with a handful of helpers, the Diehms made the schedule work, 55-mile commute and all.
Kids in the day treatment program work one-on-one with a feeding therapist while a parent observes from behind a one-way mirror.
“We want parents to learn how to do the feedings the same way we do them, so they can then go home and implement the treatment plan,” said Karie Ingersoll, MSW, a social worker for the program.
Eating is a learned behavior, she said, and the program teaches it by leading kids through the developmental steps they have missed.
“These boys, having depended on a gastrostomy tube for most of their life, didn’t develop the way that a typical child would,” Ingersoll said.
They missed the chance to develop oral motor skills like chewing and swallowing “because they were fighting to stay alive.”
The team—which also includes therapists, a dietitian, a nurse practitioner and a psychologist—created an individualized feeding protocol for each boy.
Observing their feeding sessions on the first day blew Tony away.
“I was skeptical, but it was like the first sessions they were eating and drinking,” he said. “I was like, ‘Oh my gosh, I can’t believe they’re able to get them to eat like that.”
There were struggles.
“But, I mean, it was progress for each of them from Day 1,” he said.
The secret, as the parents described it, is to stick to the protocol, be patient and firm, ignore bad behaviors and reward any progress—with bubbles, toys, books and praise.
By the end of the eight weeks, the boys had been weaned off tube feedings and were taking everything by mouth—a diet of pureed table foods plus a thickened nutritional beverage with each meal. Staff taught Erin and Tony how to prepare meals with the right consistency and the proper amounts.
In the last week, the therapists brought the boys together in a treatment room and taught them and their parents how to complete a meal with one adult in charge.
Now they were ready to take the program home.
Since graduating, the boys have added new textures to their diet and have become better at ignoring distractions and finishing a meal.
At school they eat with an aide who’s trained to help them.
They now eat enough table foods that they can order from some restaurant menus.
“The boys like to go to Applebee’s now, because we can get macaroni and cheese, we can get yogurt, we can get French fries,” Erin said. “We’re making progress. We can go out and have a family meal and do some of those things, which is pretty awesome for us.”
That doesn’t mean it’s always easy, she said.
The boys still rely on purees for a large portion of their nutrition, they’re still learning how to chew naturally and they don’t feel drawn to food.
“Growing up, we had all of our meals together as a family. That’s what I want for our family, too, and for (them) to be worked up about not wanting to have a meal, that’s hard,” she said.
“It’s something we continue to work on, (but) I think we’ll get there and that’ll be a big thing to celebrate when we do.”
In September, the family participated in the Intensive Feeding Program’s biennial reunion—a day for families to reconnect with program staff and play at a park.
“It was a day of fun so we could get away and say hi, and out of the norm,” Erin said. “We were there to see the therapists and show them that we’re progressing.”
The Diehms see the Intensive Feeding Program as a key part of “the village” that continues to support their boys as they fight back from their rough start in life.
“We’re really blessed to have a program like this so close,” Tony said. “If we’d have been anywhere else, we would have been much worse off.”