Parent Q&A: Tips for feeding tube management

2015-11-18_14.13.20Meet 13-month-old Evie and her parents, Amy and Erick Moy. Evie was diagnosed prenatally with Down Syndrome and spent the first six weeks of her young life in the neonatal intensive care unit. During that time, doctors identified a second condition: she was born with three holes in her heart.

In order to undergo the open-heart surgery required to correct the heart defect, Evie needed nutritional assistance — extra fluids and calories delivered via a feeding tube to build up the strength prior to surgery.

Evie underwent gastrostomy tube placement (also called a G-tube or feeding tube) under the care of a team of Boston Children’s Hospital’s physicians — gastroenterologists Dr. Sonia Ballal and Dr. Maireade McSweeney, surgeon Dr. C. Jason Smithers and cardiologist Dr. Rahul Rathod, along with an expert team of nurses and dietitians from the Enteral Tube Program. A tube was inserted through her abdomen to deliver nutrition directly to her stomach, allowing Evie to receive the nutrients she needed to undergo surgery.

Evie’s sweet and playful nature bring great joy to her parents and all who know her.

In recognition of Feeding Tube Awareness Week, February 7-13, Evie’s mom, Amy, offers helpful hints for parents managing feeding tube care at home.

Thriving: What were some challenges you faced when starting with a feeding tube? 

Amy: One of the biggest challenges was transitioning to a reasonable, at-home feeding schedule.

Evie’s dietitian helped us create a schedule that made her day-to-day care more manageable. Once we went to an overnight feeding schedule, Evie no longer woke up hungry, and it allowed us to sleep through the night.

Evie was also very gassy when she started out. Our gastroenterology nurses taught us how to vent her gas through the tube, and this guidance helped greatly.

Thriving: What surprised you most about having a feeding tube?

Amy: One of the most important things we learned was how to change out the G-tube button. I was terrified the button would pop out of her stomach. Our nurse demonstrated the process on a doll and assisted when it was time to change Evie’s button.

You can imagine how thankful I was months later when Evie’s button popped out while we were in a restaurant. I was able to calmly insert a new one without having to go to the emergency room.

Thriving: What advice do you have for other parents considering a feeding tube placement procedure for their child?

Amy: Be patient as you learn the ins-and-outs of G-tubing. It takes a few days, maybe weeks to get in a routine, but once you do, it’s definitely manageable.

Evie and “Pepe” the penguin backpack.

Thriving: Do you have any tips for families who have already undergone feeding tube placement?

Amy: Incorporate your personal flair into the accessories and equipment you need. Evie and her friend “Pepe” the penguin backpack, retrofitted for a feeding pump, went everywhere with us when Evie had her feeding tube.

Thriving: Can you recommend any support groups, resources or programs that have been particularly helpful?

Amy: There are Facebook groups for families with feeding tubes. They are great resources for education and emotional support.

Learn more about the Boston Children’s Enteral Tube Program.