It’s been four years, but Julie Melton remembers every detail about the birth of her twin sons, Michael and Max. It was April 1—April Fool’s Day, she likes to point out—and nothing went as planned. “Michael’s water broke at 19 weeks and two days and I delivered them both at 26 weeks and three days,” she says.
Michael and Max are fraternal twins so each had their own amniotic sac. Because Michael’s broke early, his health was severely compromised. He spent seven and a half months at the hospital’s neonatal intensive care unit, and then another 59 days in a vent rehab hospital almost 400 miles away from Melton’s Levelland, Texas, home.
Even after all of that, Michael was given less than 1 percent chance to live. “The doctors still can’t believe that he survived,” Julie says. “They call him a medical mystery.”
When Michael was finally cleared to return home, it didn’t mean life got easier. “He has chronic lung disease, so he was given a tracheostomy,” Julie says. “He has dysphasia so he’s nonverbal, and he also has severe autism spectrum disorder, global developmental delay, and cerebral palsy.”
One of the biggest challenges for Julie is keeping Michael’s weight within normal limits. “He has a very hard time tolerating his formula’s fat content and feeding volume,” she says. During his first year, he was projectile vomiting so badly that he lost 10 ounces overnight.
“They had to wrap his esophagus around his stomach to tighten it to where he couldn’t vomit,” she says. Michael began to be fed via a gastrostomy tube, and Julie struggled to find the right source of nutrition that his fragile system could tolerate.
Today, Michael’s health is stable, though there are still plenty of ups and downs. Here are three lessons Julie has learned while caring for this remarkable boy.
Lesson #1: Never Stop Trying New Things
As any parent with a child dealing with a gastrointestinal disorder will tell you, finding the right nutrition can be a seemingly never-ending experiment. “It’s a lot of trial and error,” Julie says. “Michael has a very tricky stomach.”
Over the past four years, Julie says they’ve tried countless different formulas, all of which “work for a little bit, until they don’t,” she says.
She ended up taking Michael to Maria-Paula Carrillo, a registered dietitian, nutritionist, and owner of LifeCycle Nutrition in Dallas. “My initial thought, taking into account his formula and intolerance history, was to try a blenderized diet,” Carrillo says. “This is a type of enteral therapy that’s considered and recommended for many patients with feeding difficulties and intolerances.”
Caregivers mix and blend a variety of foods to create balanced nutrition, she says, but it’s hardly set it and forget it. “We give parents a set recipe,” Carrillo explains, “but it can be difficult to manage because the availability of those foods or the patient’s tolerances change.”
They tried several different blenderized recipes, some of which worked for a while. They tested countless variations, looking for that perfect balance. “We added corn starch, and tried meat and eggs for protein and a variety of vegetables to ensure proper nutrition,” says Carrillo. “He would do great with a recipe for a while, and then he didn’t. It’s been a lot of back and forth.”
They happened upon Kate Farms almost by accident. “I had just heard about it,” says Carrillo. “I wasn’t very knowledgeable about it yet and was unsure of how Michael would react to it, but you have to be open to try new things that have a potential to help.” Sure enough, it did the trick.
“Kate Farms is the first formula with ingredients and the amount of fat content he tolerates,” Julie says. “And it’s the longest that we have been able to keep him on something without having to add another formula with it.”
What at first was just an experiment, a “let’s see if this does anything” addition to his diet, has slowly evolved into his complete nutrition plan.
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Lesson #2: Today Will Not Be Like Yesterday
From the very beginning, Julie learned to expect the unexpected. Which sounds like a line from a movie trailer—an action thriller with suspense, drama, and a g-tube—but Julie says that’s not far off. “Every day has been like, ‘I wonder what’s in store for us now?’” she laughs.
Michael, like any complicated human being, isn’t going to be exactly the same day to day. His moods change, as does his willingness to put up with mom trying to feed him. “We do have to finagle some of his feeds,” she says. “He’ll sometimes tolerate us pushing straight to the button, and sometimes he’ll only tolerate the pump. It’s always changing. Sometimes he wants the push button in the daytime, and the pump at night.”
Another big issue is sickness. When other kids get a common cold, they get cranky and sniffly. But for Michael, even the most innocuous bug can cause a gastrointestinal disaster. “Every time he gets a cold it messes up his gut so badly that sometimes he doesn’t even tolerate Pedialyte,” Julie says. “Any time he has a respiratory infection, he has a lot of mucus that just goes straight to his stomach. That’s when we have a huge battle and everything else falls apart for him.” During his last cold, he lost 2 pounds in two weeks—weight he couldn’t afford to lose. “It was scary,” she says. “He’s already such a string bean.”
But just as quickly as things go badly, they can all turn around. “He’d never hit 34 pounds before and that was our goal,” she says. “When he got sick, he went down to 33.2 pounds. But after we started using Kate Farms, he shot up to 34.6 pounds, which is amazing. It’s hard to fathom. We’re almost at his age-appropriate weight for height. We’ve never been there. Ever.”
She laughs at this, still amazed that life can often work out in your favor. “Whatever is in Kate Farms is working.”
Lesson #3: Being Optimistic Doesn’t Make You Naive
Julie rattles off all of Michael’s challenges without a hint of exhaustion in her voice. Despite being the mother of two very differently abled boys—“we call them Quiet and Riot because their personalities couldn’t be further apart,” she laughs—she usually wakes up feeling more excited and hopeful about the future. “He’s proven all the doctors wrong,” she says of Michael. “In our town, everyone calls him The Little Michael That Could. He’s constantly beating the odds.”
His latest victory was last April, when the trach that Michael needed for most of his life was removed by doctors. “I couldn’t believe it,” Julie says. “I still can’t believe it. The doctors insisted that he didn’t need it anymore. He’s getting stronger and healthier every day. When something you start to take for granted isn’t needed anymore, it opens your whole world up.”
She knows not to get too complacent. “I’m not naive,” Julie says. “Life has its up and downs. But you have to celebrate the good things when they happen, and be hopeful that they’ll keep happening.”
Somewhere in the background, a child is screaming with delight. “That’s Michael,” she says warmly. “Can you hear him? He’s watching a movie. He’s apparently really enjoying it.” She pauses to listen to him, the joyful sounds echoing through her house.
“He’s a happy boy,” she says. “Everything I do is worth it just to hear that laugh.”