Tube to Table Podcast Episode 2: What To Do While You Wait

April 15, 2019

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

What can you do while you’re getting ready to wean? This week’s episode focuses on what you can do to help your child become a happy and healthy eater while they are still tube-dependent. This includes building in rest, play, and taking a step back from anything that could be harming your child’s initiation and interest in food. 

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

First, Do No Harm: 

When your child is tube dependent, it is still very important to implement strategies and therapies that will help build their positive relationship with food. We often ask parents to stop and think to consider if what they are doing is hurting or harming the way their child relates to eating by mouth. If the answer is that it is building their relationship and interaction with food, then continue. If the answer is that it is causing your child to have a negative interaction, it may be time to take a step back.  

  • Physical Space: When children are getting the majority of food by tube, at mealtimes or in therapy, it is important to make sure that when you are offering anything you are respecting their personal space. We like to think of this as a little “bubble” where your child can feel comfortable inviting food into that bubble. 
  • Emotional Space: Your child should be feeling relaxed and comfortable whenever there is food present. This could include looking at the food, engaging with the food, or possibly bringing any food to their mouth to explore. Mealtimes are MUCH more than just eating, they are a social time to watch others eat and participate in a family routine. 
  • Time: Taking time in between meals or taking time away from offering can be important. This gives your child the opportunity to relax, have time to feel comfortable, and slowly gain more confidence around food.  

Parents and caregivers, as well as therapists, can sometimes put on a show without even realizing it. We like to think of these as different mealtime personalities that take over during meals. Children are very tuned into their parents, even young children, and if you are “working” on food a lot, your child recognizes those expectations at mealtimes. This can make mealtimes confusing and send the wrong message to your child. 

Time to Play: 

While building a foundation, you want to give your child the opportunity to explore and feel comfortable around food. What better way than play? 

  • Children learn play in different ways at different ages. The most valuable play that has the most lasting impact is child-directed and developmentally appropriate. Depending on how old your child is, messy play may be appropriate, but for an older child, focus on dramatic play.  
  • Play has to be appropriate for the child, but ALSO for the family. It is OKAY if it looks different for every family. It it doesn’t feel right, then don’t do it. Play should always be within your comfort zone, and if there is room to be playful with food then start where you feel most comfortable.  

Play is NOT the only answer. In an attempt to rebound from traditional feeding therapy and move towards more responsive therapy, play became very important. If you have been using play with your child and have not seen progress, that is okay! Play by itself is not enough, it is only a small piece of the larger puzzle. Play is play if it is comfortable, and if it is not, it is time to take a rest! 

Time to Rest: 

When children have a feeding tube and are not learning to eat, there are often so many changes happening in their environment around the tube feed themselves (timing, schedule, what is going in) that rest is also just as important as play. Typical family mealtimes are restful, social, and should not be a panel of people who are focusing on “getting” your little one to eat. We want your tube-fed children to feel comfortable around food, come to the table, and be an active participant. It is also important to have well-defined limits, roles, and boundaries at mealtimes. 

  • Parents role: Decide the where, when, and what  
  • Child’s role: Decide if they are going to eat and how much 
  • This is important because it still leaves the parent in charge of the mealtime rules and gives the opportunity to set boundaries, but you are also allowing your child to be in charge of their own body. 
  • When the focus is on the quality of mealtimes, quantity will come later. 

The tube matters: 

When children have an extensive medical history, they can get stuck in the predetermined, non-child focus of the feeding tube that helped to save that child’s life and keep them alive while in the scary medical phase. When they are out of that phase, this medical model is often kept the same. Children are always growing and it is important to keep in mind that your child will become an eater one day. Talk to your medical team about when they feel like your child is in a safe place, and ask them “What is this going to look like when the tube isn’t needed any longer?” Here are couple strategies to help you in the meantime: 

  • Schedule: Sometimes it can take a long time to find a schedule that works for a child, and then it is not adjusted. When kids grow, their schedules are naturally changing within the first few years of life. With tube fed kids, this is often forgotten. Work with your medical team and if there is room to move towards a more age-appropriate schedule, that would be best. 
  • What is in the tube: There is growing data that shows that putting a blended diet of real blended foods can have great outcomes for children.  There are a lot of resources out there that provide information on what can go in the tube, the benefits, and how to do this. Discuss this transition with your medical team and shift the conversation towards who your child is going to become.

What is your child saying? 

It is normal for your tube-fed child to not show hunger cues. They are getting their nutritional needs met by the feeding tube and do not have as many chances to show hunger. Sometimes, if they are hungry, food still has a negative association and hunger may not be enough. IF your child is not showing hunger cues, that is okay. That does NOT mean they will not wean successfully. 

  • Cues of fullness are easier to tell: Uncomfortable, push the tube away. Respecting these full cues are a great starting point to lead you to start understanding your child’s cues. 
  • Keep track of these cues and talk to your medical team about the best way to structure schedule, volume, etc. 
  • Helping your child feel heard is going to set the stage and help to build the foundation for them to become an oral eater later on. 

Thank you so much for listening to Episode 2 of Tube To Table! Stay tuned for upcoming episodes where we will talk more about hunger, where our program started, and talk to families who have successfully moved from feeding tube to family table!