Life with a tube-fed child is often chaotic and stressful. Each week is punctuated with doctor’s appointments, in-home therapy sessions, and medical supply deliveries. Amidst all of the chaos, it can be comforting to seek control anywhere you can find it. For me, I was able to find control in what went through my son’s tube each day. To add to this, some of his doctors were incredibly fixated on numbers. In a way, it was a huge relief to have something concrete to focus on. I knew how many calories my son needed every day, how many ounces he needed per feed, and the rate the formula needed to be pumped into his stomach. This was all simple math that helped me feel a little bit of calm in the storm that was a medically complex child, dependent on a feeding tube.

Fast forward many months and we had a tube free superstar! Within days of starting our feeding therapy program, my son had weaned off the feeding tube completely. This was truly amazing, I felt like simultaneously crying tears of joy and pinching myself every time we sat down and enjoyed a meal together. However, I no longer had ounces to divvy up, calories to count, and feeding rates to program into a feeding pump. The one area of my life that I had been controlling for so long was now officially out of my control. And for the best possible reasons! But this was pretty tough to come to grips with. I imagine many other parents are in a similar position when it comes to feeding their children (even for kids who haven’t been tube fed in the past). I thought it might be helpful to review how I was able to finally give up control and fully trust my son on his new journey as a foodie.

Ditch the Numbers!

Weeks after tube weaning, I was still obsessing about numbers. I had a little notepad that sat behind our kitchen table and I wrote down how many ounces my son took in and estimated calorie totals at the end of each day. This was probably my last ditch effort to maintain control over something, and, because I’d been so fixated on numbers for so long this felt natural. However, it quickly became useless as my son’s eating fluctuated incredibly from day to day. And the thing was: the number on the scale at the pediatrician kept creeping up. He clearly knew how to listen to his own body’s cues and I needed to respect that as well. The day that I decided to finally throw out that notepad I felt like a totally new person. Freedom to trust, and freedom for my son to eat whatever he desired!

Focus on the Child

Once I was able to kick the notepad habit to the curb, I was able to focus more on my son and his cues. Was he happy? Developing and learning new skills? Having a few wet diapers each day and tears when he cried? The answer to all of these were always YES! In the first two months after tube weaning my son went from barely knowing how to sit on his own to rolling everywhere, crawling, and pulling to stand. He was also so much happier, and exploring his own world in so many ways thanks to his new exposure to food and my new ability to let go. Whenever I started to doubt him, or myself, I would get down on the floor and play with him and notice his incredible zest for life, the biggest indicator I needed to tell me that he was doing just fine.

Seeking Stability and Regaining Other Types of Control

As my son was no longer dependent on the tube, our weekly schedule calmed down significantly. Almost immediately we no longer had a need for medical supplies or certain doctors. We also didn’t need all of the in-home therapies we had been getting in the past to help him eat, because he was now an eater! Many of the daily interruptions that made our lives feel so out of control and chaotic were just GONE. And with this, I began to regain control of our lives. Yes, I wasn’t controlling my son’s intake or his calories, but I was controlling how we spent our days. Instead of driving to the GI doctor, we could go to library story hour. Instead of waiting for feeding therapy, we could visit the local farm and pet the cows. These were all things that we wanted to do together, and this re-instilled a feeling that I had a bit of power in what was going on in our lives again.

It certainly wasn’t easy, and it definitely took time, but the above steps helped me to say goodbye to the feeding tube that lingered in my brain, long after we had stopped using it on my son’s stomach.  And when we have the occasional hard day or illness, I do my best to remember back to how I relinquished control over feeding when it felt like I could think of nothing else. I ditch the numbers, focus on my child, and seek stability in other areas of our life. Because in the end, he is happy and thriving, and it’s just as important for the parents to be happy and thriving, too.