Welcome back to another episode of the Tube to Table podcast! We are continuing our “Parent’s Perspective” series with Joe’s story. On this week’s episode, Heidi sat down with Maggie, Joe’s mom who participated in the Thrive Intensive Tube Weaning Program at their home in Nashville. Maggie and Heidi talk through Joe’s history including his medical complications that led to the feeding tube, past therapy approaches, and how they ended up at Thrive. You’ll also hear Maggie talk more about what she learned about herself and about Joe during the process, as well as some of her favorite memories of Joe learning to eat. Every child’s journey throughout the Thrive program is different and unique, but Maggie talks about how this process helped her learn to trust Joe and build the confidence that he could be a happy and healthy eater!
Get to Know Joe:
Joe is now 3 ½ years old and participated in the 10-day intensive weaning phase at their home when he was ~2 years old. Joe has a significant medical history including a complex congenital heart defect and multiple surgeries to repair his heart. Due to these complications, Joe first received an NG tube then a G tube at 7 months old. Tube feeding was always difficult for Joe and his family, including vomiting multiple times a day, moving the schedule, and trying different formulas. Joe initially started feeding therapy around 5 months old, although it wasn’t clear yet that the cardiac issues were impacting Joe’s feeding. Around 10 months old, Joe started therapy with another therapist, but his family was told they’d have to “wait until they can reason with him”. After moving to a different therapist to try a different approach, the new therapist had very strict guidelines and Joe’s mom felt that she had to follow every single guidelines or else it wouldn’t work. She was also told that Joe MAY be eating when he goes to kindergarten, but that his progress would be very slow.
After some frustration with no progress, Joe and his family started an online weaning program, but his mom felt that this program was extremely hard because she felt very alone without the necessary support. The program was not specific to each child, and Joe’s mom felt that it was very difficult to get support. Although he “weaned” from the feeding tube, Joe’s mom felt that she became a “feeding tube” herself since she had to spoon feed Joe while he was distracted with a show. There was an eating pattern that included sitting down and “shoveling” food into his mouth as fast as she could. Joe continued to have feeding difficulties and required another heart surgery to fix his cardiac difficulties.
How did he get started with Thrive?
After Joe’s second surgery, his mom found Thrive through a friend and was so excited to get the medical team on board. Joe’s pediatrician was helpful with the process and worked with Thrive to establish wellness parameters. Joe started a personalized, home-based wean in Nashville while working with the doctor to make a plan for treatment.
What was the experience like?
The biggest thing that Joe’s parents learned was how much pressure there was at mealtimes, without even realizing it. Prior to the wean, mealtimes focused mainly on asking him to take bites, staring at him, and watching how many bites he was taking. Joe was extremely sensitive to any pressure after past feeding therapies, specifically to people talking about food or the word “yum”. Prior to the wean, he had stopped eating any food, and although that was scary, it was good for him to take a break prior to the wean. In the beginning of wean, Joe was so happy to have less tube feeds and less pressure at mealtimes. He started to show interest in food when there were TRUE family mealtimes where everyone was eating and almost ignoring Joe. He picked up eating very quickly, and chose safe foods that he tended to want to eat a lot of. Some of the foods he preferred were yogurt, letter crackers, and kinder eggs. Joe’s parents benefitted from the in-person support to help build their confidence in decreasing supplementation and making choices meal to meal. They learned how to read his cues, focus on initiating, and build more family-based mealtimes.
Joe’s parents found it difficult to let go of the control of having the feeding tube and relying on the numbers. It can be scary to let go of that control and work to set boundaries that are age and developmentally appropriate. Learning to trust Joe and looking at how he was responding to the reduction in calories and responsive mealtimes really helped his parents with learning how Joe was as an eater. His parent learned that he is a strong and resilient boy and it was helpful for his mom to work with Heidi to see him in a different light.
This process made it possible for Joe to go to birthday parties with his friends, eat lunch at Chic-Fil-A, and go out to eat with his family!
Advice for families:
Hang in there, it’s so hard and that’s okay! When it comes to weaning, make sure you have the support you need and don’t do it by yourself. Having someone in the room guiding you along and working very closely with you made a huge difference. Make sure to have a team that works with your medical team to help you feel supported and safe