avatar

Nothing can hold us back: Our family’s tube feeding journey

Ava Jones When Ava was born in February of 2011, all was well in our home as we were figuring out how to juggle a newborn and her two siblings, who at the time were 3 and 2. We noticed that Ava was not gaining enough weight, but we were not sure why. One day in May she developed a high fever and we brought her to the emergency room where we were quickly admitted. During that long inpatient stay, doctors discovered what was causing the fever and the answer to why Ava was not gaining weight — she had difficulties swallowing and was aspirating liquids into her lungs.

Ava failed her first swallow test six days after we brought her to the hospital. After that, she received her first NG tube, which was inserted through her nose, down her esophagus, and directly into her stomach. This allowed us to feed her without risk of aspiration from swallowing. At first, I was overwhelmed with everything to do with the tube — inserting it, accurately checking for placement, carrying Ava with it, and even how it looked. When we brought Ava home, her brother commented on how pretty she was without even mentioning the tube. In that moment, I no longer saw the tube, I saw Ava.

Kori and Ava JonesAva had her NG tube for almost 4 months, which was the most stressful part of this entire tube feeding experience. We had to learn how to insert it and check its placement to make sure it was in her stomach and not her lungs. We got more comfortable with the NG tube care over time, but I can still remember the shaky, nervous, heart pounding feeling I got every time her NG tube was pulled out and I knew that I had to re-insert it or she wouldn’t be able to eat. It was a very stressful time for our family. Because she continued to fail her swallowing tests and we knew tube feeding was going to be the way Ava received nutrition for a while, we decided to have a G-tube inserted.

A G-tube is surgically placed directly into the stomach. It has been easier to work with because there’s no tubing taped to Ava’s face that can easily be grabbed and pulled out. The button placed in her belly is fairly flat, so it is not visible most of the time and although she could pull the button out, it is much harder to do so and happens more rarely than NG tubes getting pulled out. With her G-tube, Ava can lay on her stomach, swim, and do all of the things her brother and sister do.

When Ava was an infant, we fed her formula through her tube. When she turned one, I transitioned her to a blenderized diet. I had made baby food for my first two children and did not see any reason to not do the same for Ava. She doesn’t have any food allergies or motility concerns and the G-tube is just a different way to get the food into her stomach. The nutritionist helped me figure out how many calories to give Ava each day and how much extra water to give her as well.

Ava is now 3-years-old and doing well. She’s been cleared to eat and drink anything she wants orally, but it does take her a long time to eat orally, which makes it hard for her to get in all the calories she needs. Right now, I tube feed her breakfast, lunch, and a snack. She eats dinner orally with the family. She loves typical toddler food — fruit, pizza, spaghetti, chicken nuggets, hot dogs, macaroni and cheese.

Ava JonesHer tube diet is actually probably a lot healthier than her oral diet. Her tube diet is vegetarian, primarily because we discovered early on that she tolerated a vegetarian diet better. I blend whole milk and oatmeal with fruits and vegetables and work with the nutritionist to make sure she’s getting the proper nutrition and calories.

When we started on this journey, I had more questions than answers and found limited resources available to parents. I’m now part of the Feeding Tube Awareness Foundation and we’ve recently published a booklet on A Parent’s Introduction to Tube Feeding. It’s a tremendous resource I wish I had three years ago. The booklet is also available at C.S. Mott Children’s Hospital Family Center. It covers all the questions parents have when they are starting out on their tube feeding journey. It even includes a helpful list of questions to ask your child’s doctor and care team before you head home from the hospital with a tube feeding child.


Kori Jones and familyKori Jones is a parent advisor and staff liaison with Mott’s Patient and Family Centered Care program. She and her husband Bill are the proud parents of three children — 6-year-old Mason, 5-year-old Maddi and 3-year-old Ava. She is also a volunteer staff member with the Feeding Tube Awareness Foundation.

 

 

 

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.