Step #2: How I weaned my daughter off her feeding tube - INDUCING HUNGER

Emanuela was born with a single ventricle heart, transposition of great arteries and stenosis of pulmonary arteries. Like almost every other baby with a congenital heart defect we have seen during seven months of her hospitalization, she was given a feeding tube down her nose at the very beginning. I do not remember her getting a full meal orally during that entire time. And I stopped counting how many times we had to start her feed training from scratch.

We would always begin by using a syringe with 1ml of water. That way we avoided her getting a respiratory infection in case of aspiration with milk. Basically, we would just wet her mouth, drop by drop, and let her lick it.

Days later, she swallowed 4ml of drops. What a success!

But that took us half an hour! And honestly, it was exhausting. I was not immune to despair and frustration so I started doing what I do best - researching. Unfortunately, I could not find much scientifically backed data about weaning. The only undisputed fact was that every baby is different. I found testimonies of many mothers and families going through many different experiences and having many different ideas on things that helped them. The one that kept being repeated is – take the nasogastric tube out. Some babies get simply too lazy to eat, knowing they'll get their food down the tube anyway. Of course, it takes time for them to start eating on their own and figure out that tube will not be happening anymore. However, both doctors and nurses we dealt with were reluctant to do that with Emanuela.

Second most repeated online advice was to induce hunger. If she is being tube-fed regularly, every three hours (or even worse, continuously), how will she ever feel hungry? And if she does not feel hunger, how will she have an incentive to suck, swallow and eat?

After a lot of invested effort, I managed to get a green light from Ema's doctors to start reducing food intake through the tube. The idea was to reduce it little by little over the course of a few weeks. The problem with this, I found out later with the help of the NoTube* consultant, is that some babies just get used to eating less. In those cases, this approach won't work.

Due to Emanuela’s worsening heart condition, which was a priority, we had to stop this exercise after a few days already. We could not add the burden on her.

I was not keen to stop looking for new ideas, though. I wanted to keep trying. Somehow.