Breastmilk and formula. Baby led weaning. Picky toddlers. Parents are often overwhelmed by the decisions and challenges that feeding our children bring. But what about those that face additional medical challenges? February 8th – 15th marks the 5th annual Feeding Tube Awareness Week. To honour that, momstown Moncton’s Jenna Morton worked with Jill McMillan to share the story of Emery, Jill’s daughter who relies on a feeding tube – and is often referred to as Mouse by her mom.
There are more than 300 conditions that can require a child to use tube feeding; some will encounter it briefly, while others will maintain tubes through adulthood. Unless you’ve known someone who relies on tube feeding, you likely know very little about it. That was Jill, before Emery.
"I used to think feeding tubes were solely for people with terminal illness, premature babies who are still in NNICU, or severe handicaps," recalls Jill. "But Emery has opened my eyes to how wrong and naive I was."
Emery was born premature, at 27 weeks. She, like many preemies, used a feeding tube while in the neonatal intensive care unit (NNICU), but was discharged feeding on her own. Feeding proved to be a struggle, though.
"She always struggled with it," recalls Jill. "Always choking, frequently turning blue, and then she just quit feeding altogether." For months, Jill, Emery, their family, and their healthcare team tried to find solutions. Eventually, Emery was diagnosed with severe GERD (gastroesophageal reflux disease), gastroparesis, a pseudo obstruction in her bowel, a swallowing disorder, and oral aversion.
"In order to help the aversion and let her be ok with things around her face and in her mouth, we went the route of a gastrostomy tube," explains Jill. "She is now almost 15 months old and remains dependent on her tube for her fluid intake. We've gotten to the point that she can handle solids quite well, but fluids are still a struggle, as is weight gain."
It can also be a struggle to take Emery out in public when she’ll need to eat. Not that it bothers Emery; "her tube doesn't slow her down in the slightest! It's just an extension of who she is and what she has overcome," notes Jill. But there is a lot of equipment needed to leave the house ("I swear I'm like a walking medical supply store!" says Jill), and then there’s the public.
"We get stares, dirty looks, the 'what is wrong with her' or 'how long will she need that' questions. I realize it's a valid question, but the truth is, I don't know," says Jill. "No one knows. And it stings every time I get asked."
Jill says it was also hard to accept tube feeding, as a mother. "For a long time I mourned the loss of being able to feed my baby. Snuggling your baby close and having that bonding time, whether breastfed or bottle fed, is so special! And I never got that."
But she did get a "little mouse" that has taught her many things, including the positives about having a tube-fed child, as Jill shared with friends to mark Feeding Tube Awareness Week.
When my baby is sick, I don't have to worry if she won't eat or drink. It all goes in her tube anyway.
Medications are SO much easier to give! No fighting to get it swallowed.
Picky eater? No problem! Blend up a healthy diet and put it through the tube!
Jill is quick to point out that the positives "don't outweigh the fact that no one wants this. I look forward to the day Emery will be tube free and can enjoy all her nutrition by mouth – although at the same time it makes me nervous to be tube free! But for as long as she needs it, we embrace it! We look at everything good and wonderful it has created for her. She is happy and thriving. I couldn't ask for more than that."
(Photos by Jill McMillan Photography)
