It’s the start to the holiday season and although that brings joy, it also brings many other feelings! The holidays are a time that can bring back ALL of the feelings, good and bad. This topic can be a difficult one for many families since it involves digging deep into your emotions throughout all the phases of the tube weaning journey. This is such an important topic to discuss because often the experience of having a child who is tube-fed or weaning from a feeding tube can feel very isolating without the right support. In this week’s episode, Jennifer and Heidi will talk through what these feelings can look like, how to become aware of those feelings, and a few strategies to help manage those feelings. In future episodes, we will feature special guests who will focus more on specific strategies for coping through a stressful event. This episode breaks down the two important steps involved with feelings while weaning your child from the feeding tube. This involves first identifying the emotions and patterns involved with it, then creating a plan to move forward. 

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

A lot of Worry! 

When it comes to weaning your child off the feeding tube, there are a lot of worries involved. Our colleagues, Dr. Katja Rowell and Jenny McGlothlin at Extreme Picky Eating created the Worry Cycle to help visualize the downward spiral of worry and its impact on feeding. The Worry Cycle can be found in their book, Helping Your Child with Extreme Picky Eating. 

What is it? 

Worrying is a natural part of parenting, and it is hard to identify how to step and get out of the pattern. When you look at feeding specifically, it is so closely related to a parent’s identity that when there is a feeding difficulty or their child has a feeding tube, the stress and anxiety increases drastically. Often times, that worry translates to stress and pressure at mealtimes. This is because parents are rightfully so, worried about their child. When this happens, they tend to engage in strategies that are counter productive to building their child’s relationship with food. This may look like forcing, bribing, or negotiating with your child to increase what they’re eating. When parents engage in these counterproductive activities, children tend to refuse and push away even more, which then causes more worry. This downward spiral or worry and pressure often leads to the ultimate refusal with children and families feeling lost on what to do. 

Isolation: 

Families often share that they feel very isolated by the fact that there are not a lot of great resources out there, and the resources they have do not have great quality. It is difficult because your medical team is trying their best to help identify the problem and “fix it”, but as we have discussed in previous episodes, they are not trained in feeding development or feeding tube weaning. Because of this, families lack trust in one or many medical professionals, which is hard because we need those professionals to help us on our journey.  

At Thrive, we work with families extensively in the preparation of a tube wean because parent involvement, buy-in, and medical team involvement are all crucial in the success of your child. Parents are the most important agents of change when it comes to feeding their children and helping them overcome their feeding challenges. If a parent is not okay or has underlying worries, it will be a more difficult process for your child. Taking this step to acknowledge these patterns and worries are so important in order to move forward. Take this time to look at where you are in the cycle and identify where you may be engaging in counterproductive feeding behaviors at mealtimes. 

Now what? 

There is a sense of relief when people can identify the problem and work towards the next step. When families realize that some of the pressure can be removed, they may feel guilty, but we want to assure you IT IS NOT YOUR FAULT! The best thing you can do from here, after identifying your emotions, is work to find a responsive feeding program that feels right to you in your gut. This will help provide some relief that there are people out there who can help and you are taking a step in the right direction. When you are in the middle of a tube wean, or starting a wean, there can be even more emotions since the dependence on the tube is gone and emotions may come bubbling up that you thought were dealt with. Taking the tube away can cause new fear or different emotions that are not necessarily positive to come back in. Your therapist should be able to help you with these emotions, as well as how they may be impacting mealtimes and what you can do.  

Parents often ask, “Will this last forever?” and the answer is no! It is okay to feel positive, hopeful, and look towards the future. Sometimes for families that means talking to a loved one, looking at videos in the past, or taking a step back from the situation. 

Build your team! 

Make sure you have a team that supports you full of people who love and care for you. This should include a member of the medical team who can tell you your child is safe and reassure any other medical thoughts. Your team should also include someone who is close and understands the day to day struggles, as well as someone who is more distant who is able to see progress more clearly being OUT of the day to day routine.  

Thank you for listening! We really hope this was helpful. If you have any questions please do not hesitate to reach out at thrive@spectrumpediatrics.com!