Almost four years ago, I embarked on a journey with my little family I never thought we would be on: weaning my daughter from her feeding tube. Our weaning story began with the decision to place a feeding tube in the first place. My daughter was born full-term, without any complications. She was on the smaller side when she was born, but everyone assured me she would grow super fast.
This didn’t happen.
From the very beginning, we struggled with feeding, and after months of doctor appointments, lactation consultants, a late referral to feeding therapy and trying more bottles than I ever thought were available, my daughter ended up with a feeding aversion. At 10 months, the decision was made to have a G-tube and Nissen surgery. She stayed on those tube feeds for 10 months before we started weaning.
After almost two years of ups and downs with feeding, we were finally ready to explore weaning from the G-tube. I’ll never forget the day our feeding therapist came to us and said, “If you’re not ready to explore weaning, I think we’ve gone as far as we can with therapy.” All the emotions seemed to hit at once. I had come to a place where I never thought I would see the day that my child was able to eat completely on her own. Though there was no medical reason for her to have a tube that could be identified anymore, it was surreal to hear that my little one was ready.
From start to finish, our wean took about 9 weeks. Here are the biggest lessons that I learned:
1. Trust the process.
My husband and I quickly learned that we needed to set aside our expectations of what our weaning timeline “should” be. There were times, especially during the first step, when I was convinced that nothing was happening. We had been in feeding therapy for over a year and some skills were there, but her volumes just weren’t. However, given the time and space to explore, and allowing our child to set the pace, she took off in later steps. Once we learned to read her cues and to respond appropriately, our daughter showed us that she was more than capable of eating orally.
2. Lean on your team.
We were blessed with an incredibly supportive feeding therapy team. And in the beginning, I checked in with our feeding therapist daily! Being able to share concerns, triumphs and progress really helped through those first few weeks of finding our new normal. Through those interactions, whether in clinic, over the phone, and in text messages, we were able to explore additional options to aid us during and after active weaning was complete. For us, that meant looking into different nutritional supplements and medications recommended by our doctor. Each child and what they may need is different, so utilizing the experience and knowledge of your team is critical.
3. Give yourself some grace.
I haven’t talked to anyone who has or had a tube fed family member who didn’t have a pretty extensive – and intense – medical experience. Weaning is a huge shift in the way you think about and approach your daily schedule. Things will not always go perfectly. You will second guess your choices, feel nervous, and that’s all OK. So, making sure that you are caring for yourself during this time is just as important as following your wean plan.
All this to say, everyone’s wean journey will look a little bit different, so try not to compare your journey to anyone else’s. Trust the process, communicate with your team, and make sure you’re taking care of yourself whether it is a couple weeks or several months of weaning.
Caitlyn O’brien, Parent Coach