Episode 39: A Parent’s Perspective: Noelle’s Story

April 30, 2020

Posted in: Feeding, Feeding Tube Weaning, Tube To Table Podcast

Welcome back to another episode of Tube to Table! We are so excited to have another episode as part of our “Parent’s Perspective” series. This week we are joined by Jessica & Chris, whose daughter, Noelle, went through the Thrive Tube Weaning Program a few months ago. Jessica and Chris are sharing their story with Heidi, the clinical coordinator of the program and Noelle’s therapist during her wean! Throughout this episode, you’ll learn more about Noelle’s history, what feeding therapy looked like for the first 5 years, and how her parents found Thrive. Noelle’s parents share their perspective on the intensive program including their experience while traveling to Nashville, Noelle’s amazing progress, and what they learned throughout the process. They will also share advice they have for families of tube-fed children who are either just leaving the NICU, just received a feeding tube, or ready to wean! 

You can download this episode from ItunesStitcher, Spotify, Google Play, or listen to it below:

Noelle is a 6 ½ year old little girl who was born very early, and very small. She weighed 1 lb., 1 oz. At birth and spent 6 ½ months in the NICU with many ups and downs. Noelle progressed well in the NICU, but always had difficulty with her lungs. Although feeding was attempted early around 5 months old, she had continued concern with her respiratory support and possible aspiration. Noelle was discharged from the NICU with a G-tube and her family was excited to be together as a family at home! 

They were told at the time, “Noelle will eat eventually”, but they were not prepared for how long that “eventually” might take. Her parents were hoping to see progress throughout the years, even if it was slow, but it felt like the more therapy and focus they put on eating, the less Noelle ate. Over the years, she had developed an aversion, but through therapy she was able to become more comfortable around food and develop a “neutral” relationship with food. Therapy helped her overall relationship with her, but food still didn’t matter to her and it seemed pointless.  

How did they end up at Thrive? 

Noelle’s family started to get frustrated since Noelle was almost 6 years old and the medical team kept telling them “It will happen with time, when she’s older, she’ll eat” and it wasn’t happening.  Noelle had been in therapy for every week for 5 ½ years leading up to the intensive with Thrive. Although there were gains in her aversions towards eating, there was no progress in her eating.  Initially the team recommended an inpatient program for Noelle, but her family felt that the medical clinic and being away from their family did not seem appropriate for Noelle, or any child learning to eat. They heard about Thrive and immediately felt like it made so much sense. 

What made sense? 

After doing the initial intake call with the Thrive team, her parents felt that it just made so much sense! Having Noelle learn to eat in a home environment with her family present made so much more sense than a medical facility. Noelle had never been able to experience hunger, so the opportunity to have her feel hunger seemed to click with the family, knowing Noelle had the capability. It felt safe to her family to have an ongoing process of follow up to continue to get support and help Noelle move forward as she continues to be in her natural, home environment with her siblings.  

Nashville Experience 

Noelle’s family traveled to Nashville for her intensive program. During the 10 days, it was Noelle and her mom for a few days, then the entire family was able to come join for part of the time. Throughout these 10 days, her family loved that Heidi was able to join them on fun activities and take the focus off the eating. Noelle called this her “special trip” and had so much fun! Her parents share that it was so helpful to have a therapist there during all of the natural eating opportunities that was able to help the family without directly addressing Noelle about it. This included modelling, conversations with the parents, and focusing on making eating an “experience” for Noelle. Noelle learned new skills throughout this time including chewing, biting, and trying new foods. She would take very small minimal tastes prior, but at the end of the intensive, Noelle was taking much larger bites and learning how to manage all this new food! Her parents learned that they could trust Noelle to take care of her own body and know what her body needs. Noelle became more confident as her eating improved.  

Her parents find it so fun to watch Noelle eat and hear her say “This is soo good!”. She genuinely enjoys food now! 

Advice for Other Parents 

Heidi asked Noelle’s parents to share some of their advice they would give to families who are either just leaving the NICU, just received a feeding tube, or ready to wean.  

  • There are a lot of other options out there and to continue to look and trust your gut instinct on what feels right for your child 
  • You’re not alone, there are other opportunities that can serve your family and child really well 
  • Although the financial part may impact your family, it was so worth it for a program that teaches your child to eat for the right reasons. 
  • From the moment your child receives the tube, there should be a plan for working towards oral eating.