Tube to Table Podcast: Episode 26: A Parent’s Perspective: Benji’s Story

January 16, 2020

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

We are so excited for this week’s episode, which marks the start of our series “A Parent’s Perspective”. The Tube to Table podcast will be featuring parents and families who have gone through our Tube Weaning program and can share their experience! In this week’s episode, our feeding therapist, Jamie Hinchey, is interviewing Benji’s parents, Cory and Ivy from New York City. Benji is also here so you may hear him chiming in! Benji’s family participated in our intensive tube weaning program at their home in New York in May 2018. Benji’s parents are sharing a little bit about his history and where their feeding tube journey started. We will talk about how the feeding tube helped Benji in the first few months, when they knew it was time to work towards weaning him off the tube, and how they chose the Thrive Tube Weaning program. Jamie will also talk with Benji’s parents about what was helpful during the intensive portion, a few keys to success for their personal journey, and how follow up was a big part of Benji’s journey. You’ll also hear a few exciting things about where Benji is today and what he loves to eat! 

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

How did their journey start? 

Benjamin received his NG tube right after birth while in the NICU due to his difficulty with coordinating the suck-swallow-breathe reflex.. He then had his G-tube placed at 2 months old. Benji’s parents were worried and concerned about how Benji would learn to eat, what this would look like at home, and how they could continue to expose him to eating opportunities. As he grew, he became very behavioral with the feeding tube and would look for the pump in the area of the room it was kept. When he was older his parents started to introduce him to other foods (purees) while in the highchair and he LOVED it! His parents made sure to keep mealtimes fun and focus on the exposure, rather than forcing any volume. Eating was always fun for Benji, he would make a mess and enjoy himself. 

This was so important for Benji’s parents to do because they wanted to see him enjoying food. It also helped to set Benji up for success throughout the wean because his parents had worked so hard on making mealtimes fun and enjoyable, rather than focusing on the “what” he was eating.  

How did they know it was the right time to wean? 

For Benji’s parents, they had a very supportive medical team and many tests were done to make sure Benji could swallow successfully. His GI doctor felt that Benji was showing signs of readiness and felt it was an appropriate time to start eating orally. His parents researched tube weaning programs and found Thrive by Spectrum Pediatrics. After an initial call with the Thrive team, they felt that this was how they wanted to move forward. Benji’s mom shares her story of reading facebook groups and looking at other programs, but felt confident knowing that a therapist would be in their home, during every meal, to help them feel supported and build a connection with the entire team. Benji’s parents also felt so comfortable knowing that the Thrive team was speaking with their medical team and establishing medical parameters with the doctor. This helped them feel so safe entering the program and supported by everyone.  

Benji’s Wean: 

His parents share in this episode the importance of having someone in their house to observe mealtimes, notice cues, and recognize more subtle cues his parents may not have seen. It can be hard for parents to identify these cues because they are doing their best to provide a loving environment at meals for their child. Benji’s parents also knew that because he had the feeding tube for 12 months at the time of the wean, he did not know what it meant to be hungry. His parents knew what the doctors said he needed and followed that protocol, but during the wean as Benji learned how to respond to hunger, his family was able to learn his different cues. This can be such a hard transition for families because the feeding tube allows parents to know exactly what their child is getting everyday, and when that goes away, it is scary. Having the therapist in their home to help teach them hunger cues and make observations was so helpful.  

A Couple “Keys to Success”: 

-Patience: The process is important and being patient throughout the entire program is necessary to help build success. Benji’s parents share their story of being nervous to trust the process, but learning that if they try to rush anything, Benji’s progress may slow down. Although Benji was off his feeding tube by day 5 of intensive, his parents continued to learn patience throughout the follow up period. 

-Trusting the Process: Benji’s mom shares that it is so scary to let go of the tube and the numbers and transition to trusting the program and Benjamin. Learning his hunger cues did help his parents learn how to trust him and recognize that he knows what his body needs, and is able to show them that with clear cues.  

10 days are over…what now? 

Following the 10 day intensive program, Benji’s participated in the 6 month follow up that the Thrive Tube Weaning program offers. This can be scary for parents because the therapists are no longer in the home, and it is a big transition period. His parents share that the biggest struggle was learning to trust Benji and letting go of all the numbers related with the feeding tube. His parents share their journey on stepping away from the numbers and learning to read other cues to make sure he was “okay”. 

“I remember you telling me there is going to be a dayw here you have no idea what Benji ate.” – That day came! His parents share their journey and how they ended up learning to trust Benji and learn to enjoy mealtimes as a family.  

We are so proud of Benji and his family! Benji currently loves waffles, cheese, smoothies, mini  muffins, and so much more!!