Welcome back for another episode of Tube to Table! This week we are talking about how to measure progress while weaning your child from their feeding tube. We have been hearing from various families that we work with that there is confusion over how progress is measured. This is also a common conversation we find ourselves having with healthcare teams when discussing a child’s progression throughout a tube wean. Last week, we talked about how to initiate the conversation with your medical team and the importance of providing them resources on tube weaning. This week, we are focusing on how to shift the focus from a “number” to the whole child when looking at measures of success. There is confusion when people look at factors that we consider parameters or boundaries, as the way to measure progress. This week’s episode will identify the four measures of progress that we focus on at Thrive and why they are important. Heidi and Jennifer will break down each factor to discuss what to look for and how to identify these measures of success.
What are the measures of success and why are they important?
This may surprise you, but the biggest measure of a child’s progress during a tube wean at Thrive is not on the amount they are eating or drinking. Our focus includes the child’s initiation, enjoyment during mealtimes, attention to eating/mealtime, and a child’s satiation or ability to feel better after they eat. Many families are surprised to hear this, especially those that may have come from a non-responsive therapy background. This is often misunderstood because in many therapies, the focus tends to be more quantitative. To those not familiar, these factors may seem “fluffy” or “extra”, rather than an actual measure of progress.
At Thrive, we tend to see that people, often well-meaning parents or medical teams, misplace the focus of success on measures of safety, which include things like growth, weight, hydration, volume of food, and mood or energy levels. These parameters are very important during a wean and should not be ignored, but should also not be used as the sole measure of success. These are indicators of how a child is doing and used as safety parameters with your medical team to make sure a child is safe during a wean. If the focus remains on the quantitative measurables listed above, rather than the qualitative, a child’s progress can be limited. The research shows us that a child’s long-term relationship with food is sacrificed when therapy focuses solely on intake. If a child does not understand self-regulation or has a poor understanding, they are at risk for long-term problems later in life.
“When we cling to ounces as a measure of progress, we sabotage the relationship that makes growth possible” – Heidi Moreland
How do we identify these measures of success?
Initiation may look different for every child, so it is important to become aware of your child’s subtle cues. These may be obvious cues such as crying, talking, or reaching for food during the meal, but it is also okay if your child’s cues are something very subtle. As adults, we expect this to be a very clear “initiation” cue because that’s what we would do, but it’s important to remember that during a wean a child is learning all of these new cues! Initiation could start with a child reaching slightly forward, leaning forward, looking more alert in their chair, etc. For an older child, this could mean talking more about the food or starting to show more interest in asking questions about the food. At Thrive, the therapist will help you identify these different cues, as these often come up throughout the intensive portion of the tube wean.
Many parents report that is a little easier to observe and a child may demonstrate a clear difference. Often times, their body may seem more relaxed, shoulders might drop down, their face may look more alert. You may observe more smiles, pleasant vocalizations, or more talking overall and engaging with family members. This doesn’t always have to be engagement with the food, but simply engaging with their family members and seeming happy in the mealtime setting. Because many of these cues can be subtle, we often recommend that families look back at the difference from what they were doing before. Video observations can be very helpful for this reason. Focusing on the togetherness of the mealtime and the time spent with family will help to build that enjoyment.
When a child is not comfortable or doesn’t have the internal motivation to eat (hunger, curiosity, togetherness, etc.), they cannot always tolerate a lot of time with food or at the table. We often see a child who might initiate, but will take a few bites, and then either want to leave the table or move on to the next available food. Typically during a wean, we see a child’s attention to food and/or the mealtime drastically increase because they are learning to eat in a meaningful context. As you start to see that increase in attention at mealtimes, they are then able to build more comfort around the food because they’re exposure has also increased.
This is a measure of success that is difficult to measure, because there are often ups and downs as a child is learning self-regulation. Many parents will share after a wean that they thought there would be a magic moment where their child immediately understands hunger and establishes an instant connection, then starts eating. Although this can sometimes happen, it is rare because it is typically a series of subtle changes overtime that help to build a child’s understanding of hunger. This can be hard for an adult because as adults, we understand that when we are hungry, we eat something we love, and feel better immediately. For a child learning to eat in this new context, they must also learn those hunger cues and how their body feels. This is why you may sometimes see a child eat a small amount, feel better for a short amount of time, then get hungry very quickly. It is crucial to allow your child to learn that self-regulation independently because it is a series of those experiences that result in the ultimate success.
If you are pursuing a wean with your medical team, at home with support, or through our program, it is necessary to create a system to remember to look at all these measures of success. When it gets hard, people want to cling onto the “easy” measurable factors, but that is when it is most important to look at the qualitative measures. It is important to establish balance and it’s okay to take small steps. This does NOT have to be an all or nothing mindset. If your child continues to need hydration or supplementation by tube, but is still initiating, that’s okay! Weaning can often look like a dance of ups and downs, rather than a straight line, and that is how you keep children in a stable place while building a positive relationship with food.