Step 4#: How I weaned my daughter off her feeding tube - HUNGER AND COURAGE

After the video fluoroscopic swallowing exam (VFSE) and encouragement by PaedDr. Barbora Bunová in Skalica (Slovakia), there was nothing else to be done but to induce hunger. I had to make Emanuela hungry somehow. And make her realize that what she is feeling can be satiated by eating.

I started with bigger breaks between the tube feedings.

After she woke up, around 7am, I would give her a bottle. One hour later, I would repeat it. Since she was not able to drink a whole portion at once, I would feed her less, but more often. I would turn on the feeding pump only later in the morning, around 9am, for four hours or so. Later again, when the pump stopped, I offered a bottle.

At that time, it felt like all I was doing was feeding her. She never showed normal signs of hunger. She did not cry. Sometimes it would feel like she would die of starvation before she would ask to eat. So I made sure she was eating. All the time. Bottles were offered every hour or even 30 minutes.

The pump was on again in the evening, around 6pm. I was writing down every milliliter and calculating every minute. What she did not eat in the afternoon, she got through the tube during the night. But I planned it to finish at midnight. We both needed rest. And most importantly, she needed to get hungry over the night for the next day.

Two months after we were released from the hospital, Emanuela was tube fed only in the morning and evening. In between, she only got what she drank by herself. After some time, the progress slowed down again. I knew we were getting stuck.

Final step of weaning her off continuous tube feeding was pure luck. A connecting tube between her button loop (the jejunostomy entry) and a pump tore and the hospital did not have a substitute. We were forced to have her eat only as much as she swallowed for two full days. I would never have had the courage to do that on my own initiative. And that was the last push she needed. After we got the new tube, I skipped her morning tube feeding and kept only the night one. Ten days later, not even that was needed. It was just before her first birthday. Ema was eating all by herself.