Whether it’s your first baby or your third, you might have a general idea of how it’ll probably go: sleepless nights, baby gurgles, and enough rocking, shushing, and lullaby-singing to last you a lifetime. But for tubie families — especially those with tube-feeding babies, toddlers, and kids — life is anything but predictable. Every day looks a little different, and progress can feel slow and small, though steady.
Many parents don’t even know what tube-feeding is when they show up to deliver a baby. In fact, for Samie Perez and her daughter Miah, now three years old, they went home from the hospital thinking that she had feeding difficulties — but nothing that out of the ordinary. But “no matter what we tried, she would not eat anywhere near the amount she needed to consume to survive,” says Perez.
Before she turned two months old, Miah was back in the hospital, which is where the family learned that she had oropharyngeal dysphagia, a condition that affects how the mouth and throat work together to swallow, likely stemming from a rare anomaly in her neck and spine. An NG (nasogastric) tube was initially used to provide nutrition, but it caused additional complications. So when Miah was eight months old, she underwent surgery to place a G (gastrostomy) tube directly into her stomach — marking the beginning of the family’s tube-feeding journey.
That didn’t mean things suddenly became simple — or easy. After all, they’d been sent home with less than an hour of training on how to tube-feed, and Perez found herself with her infant, a toddler, a steady stream of doctor appointments, and zero answers as to what was behind Miah’s feeding issues. Miah threw up after almost every meal, leading the family to try a ton of different formulas and undergoing various medical tests. “We constantly rearranged our lives around new medicines and regimens, and just prayed she kept the food down,” says Perez. “She was frail, fragile, and malnourished.”
Even amid the tough times, there were a few clear turning points for the family to hold onto — big-picture before-and-after moments, like life before and after the NG-tube, before and after the G-tube, and before and after surgery. What stands out for Perez was the discovery of Compleat® Pediatric Organic Blends, a nutritionally complete formula intended for children 1 year of age and older, after learning about blended food diets from other parents in feeding-tube groups. Perez liked the organic ingredients, and Miah’s registered dietitian was a fan of the brand’s formulas, knowing they were nutritionally well-rounded. Perez refers to this as “the first sense of relief we felt” in the family’s tube-feeding journey. Miah finally started to keep food down, gained weight, grew hair, and started to thrive. “This was honestly our last-ditch effort,” she says. “So when Miah responded positively to Compleat® we were all ecstatic and relieved.”
After that, progress came in smaller, more incremental ways. Instead of traditional milestones, the family began celebrating what they call inchstones — those quiet, everyday wins that may seem small but add up over time. For Miah, that meant tracking how much food she could keep down and how much weight she gained. Most recently, a major inchstone was her transition to Compleat® Pediatric Original 1.5, which is more calorically dense and allows her to eat three times a day — following the familiar breakfast-lunch-dinner rhythm of kids her age.
“The texture and flavor are more appealing for Miah so we have seen some progress in her willingness to eat by mouth both with the formula and also regular foods,” says Perez. “This means Miah can explore and enjoy new flavors and foods safely while still receiving all of the nutrition she needs via tube.”
Another win has been Miah’s oral progress. When you don’t eat by mouth (or use your mouth in a typical way) as an infant, it can impact the mouth muscles — and that can in turn affect speech development. After a year on a waitlist, Miah finally completed an intensive, outpatient feeding program — and by the end, “she started to not only try eating foods by mouth, but she also started trying to talk,” says Perez. “I am beaming with pride to see her full of life, to see her try new things, to see her verbalize her needs and emotions.”
The inchstones have given Perez a way to view progress in real, tangible moments. While they’re small, they’re no less powerful than a baby’s first time rolling over or saying her first word. After all, Perez says, “an inch feels like a mile when you’ve been in the same place for a long time.” She can look back at all of these memories and see how far the family — and Miah — have come, bringing a sense of joy and fulfillment.
All the while, the community has been crucial. For one, that’s how Perez learned about blended food diets, which was a game-changer for Miah. So once the family got some support, including a nurse — giving Perez a chance to focus on herself — Perez set out looking for other tubie families to connect with. “Thankfully, I found some really great groups on Facebook to offer me a sense of solidarity,” she says. “From there, I decided to start sharing our story on my social media and the network of people sort of fell into my lap.” She found support through podcasts, magazines, other creators, and even some big-name companies. By connecting with other parents who are also living the tube-feeding life, she’s learned since that regardless of how Miah’s tube-feeding journey progresses, “it’s not going to limit her experiences, and that is truly a gift to me as her mom.”
Plus, this robust network has given Perez the opportunity to pay it forward — and serve as a guide and source of comfort for other parents who were just as lost and discouraged as she was. “Several nights a week, we vlog our final tube-feed of the day for me to post to my page and give people insight to our experiences with tube-feeding,” she says. Her message for anyone early into the journey? “I know aspects of this are scary, but things truly do get better,” she says. “One day, you will be able to breathe again.”
Even with all the progress, it’s essential to take life day by day. Miah still has ongoing medical problems that can sometimes impact her ability to keep food down; when that happens, Perez has to make sure she makes up those calories — which can feel scary and fraught, “because our early experiences with tube feeding were very traumatic.” But ultimately, every day brings Miah closer to a life that mirrors or resembles that of kids her own age. Now with years of inchstones and experience to draw from, Perez feels grateful for all that tube-feeding has offered. “I am proud of our family and how we can live an extraordinarily normal life because of this tiny device,” she says. “I can look back at all of the inchstones put together and see just how far we’ve come.”
Samie Perez is a paid partner of Compleat®. Compleat® products are intended for use under medical supervision.
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