What You May Have to Give Up for a Wean to Be Successful
Elisabeth Kraus, MA
Most parents have a love/hate relationship with their child’s feeding tube: on the one hand, the placement of the tube was traumatic, and all of the side effects (vomiting, reflux, beeping machines, and more) create so many exhausting and irresolvable issues. But on the other hand, the tube creates a sense of control and predictability in the midst of difficult medical complexities, and allows parents to feel confident that their child is getting what they need.
The teeter-tottering between those two realities makes deciding on a tube wean complicated because weaning requires parents to lean into the idea that life can be normal: less medical and less controlled, more flexible and more joyful! But as much as we all crave normalcy, leaning into that life means recognizing some of what you may need to give up in order for your child’s wean to be successful. Here are just a few of those things:
Offering fewer (or no) opportunities to eat by mouth each day.
Because tube-feeding comes with complications, it’s easy for parents to fall into a routine that includes few or no opportunities for children to interact with food. It grows easier to embrace that foodless reality when mealtime offers are quickly rejected, messy, unproductive, and defeating.
But weaning from tube feeds to oral eating means leaning into offering consistent opportunities to eat, even before you expect a child to actually begin eating. That routine can start by offering the chance to eat age-appropriate, weanable foods (bottle or breast for infants) before each tube feed and moving into a pattern of offering the chance to eat at least 5-6 times a day (more for young infants).
For many families, this means drastically adjusting your daily routine to accommodate consistent, pressure free offers because you recognize that in order for your child to learn to eat, you’re going to have to let go of a routine that doesn’t include regular and frequent opportunities for your child to engage with food.
The ability to “just tube.”
Building on #1, in order to wean successfully, parents have to embrace the reality that the tube is no longer a replacement for eating. In fact, if the goal is to get rid of the feeding tube altogether, parents need to let go of the idea that if they don’t have the chance to offer food, they can use the tube instead. If weaning is successful, that won’t be an option anymore!
This means that when you plan to be out and about, you should pack snacks and meals to bring with you. It might mean waking your child from an extra-long nap if their long sleep will interfere with offering sufficient enough opportunities to eat that day. It means planning time to stop at a rest stop or restaurant if you’re going on a long road trip. In short, it means choosing to always offer the chance to eat before tube feeds because you know that in a very short while, you won’t be able to “just tube” anymore.
The flexibility to make up calories at night/while your child is sleeping.
#3 extends what we’ve talked about in points #1 and #2 by recognizing that typically eating people eat while they are awake. And weaning towards that typically-eating life means recognizing that “eating” has to take place while your child is awake. For many families, the first step in weaning requires adjusting your tube-feed routine out of sleep times and into wake times.
As logical as this might sound, it’s not an easy shift for many families to make – especially when children struggle to tolerate tube feeds while they are awake. But because it’s an important shift to make, parents should rely on their weaning team to help! Often, tube feeds can be re-organized into a routine and volume that children can tolerate better with some thoughtful help. This opens the ability for “tummy filling” to happen while your child is awake, and allows you to let go of tubing while asleep.
Going rogue.
The last thing that parents need to let go of in weaning is the tendency to “go rogue.” Going rogue means making decisions on your own, without informing your supporting team. This is not easy for many families because working with an unsupportive medical team creates fear, frustration, and the feeling that nothing you’re doing is quite right. Many families validly respond to that experience by opting to not tell their teams what they plan until after it’s already done.
But when it comes to weaning with GIE, we hope parents quickly recognize that we trust them. Parents know their children best. You are always your child’s best therapist, best support, and best advocate. This means that we will always default to believing the best of you and supporting your goals for your child to eat successfully on their own.
Because we trust you, we ask that your partnership with us include regular, consistent, and transparent communication. In short, we’re asking you to give up the idea that you can just “go rogue” because you know that if what you were doing was going to work, it would have worked already. If you want to change your child’s tube feeds, for example, let us know! If something about the routine isn’t working, tell us! If weaning from screentime at the table just isn’t working, send us a message! When you’re worried or anxious or frustrated, reach out! Because at the end of the day, we can always guide a process more successfully when we know what’s going on.
Of course, the highlight of this entire conversation is this: weaning from tube feeds means embracing a life that you have less control over. And losing control is scary, especially when it involves your precious baby! As you consider the timing for your wean, keep in mind that there are some parts of your life that are going to change. Sometimes, that change is going to suck! Because even if change is good, transitions are hard.
What’s wonderful, though, is that you never have to go through the transition on your own. Letting go of these things means that you’re going to have the space for even better – happy, independent mealtimes for the whole family! And that will make the loss of control so, so worth it!