Our son is free from the NG tube after only 3 weeks, thanks to the incredible team at Growing Independent Eaters! And now that we’re at the end of our weaning journey, we have to share some of the things we learned in the hopes that it will help some of you to believe that weaning is impossible.
Our son is 10 months old, 9 months adjusted. He had heart surgery at 3 weeks old, with IUGR (born very small) and was 100% tube fed since birth. He had no medical reason not to eat; in fact, he only got the feeding tube because of heart issues. He NEVER ate of his own volition before weaning.
So this is what we were told about our son before wean:
“He is not ready to wean due to lack of oral skills.”
NOT TRUE! We had tongue-tie released and lots of oral practice. But nothing helped, because he wasn’t hungry! When we safely and systematically reduced tube feeds to introduce him to his own appetite, he was suddenly able to latch and to suck from bottle. These were things we had never seen him do before.
“He has to gain weight before weaning, because weaning can lead to a LOT of weight loss.”
NOT TRUE! At least not in our case. Our son’s doctors and dietitians were obsessed with weight curves and gaining, convinced that weaning would lead to substantial weight loss. But our son maintained his weight while weaning (no gain, no loss), and he has already begun to gain again only one week after removing the tube. He is now eating more than we were ever able to put through the tube (without causing him to vomit).*
"He will wean himself off the tube when he is ready with feeding therapy and food exposure.”
NOT TRUE! We tried this for months, and it didn’t work, because he was full from his tube feeds. We learned not to expect a fully tube fed child to take in extra calories on top of tube feeds. Oral intake comes during a wean, and not often before.
“If you just try a ‘cold turkey’ wean, and it doesn’t work, then that means that he isn’t ready for wean.”
NOT TRUE! We tried this. Sometimes, we’d let him go 10-12 hours when he pulled the tube out. It never worked because, as we learned, it takes more than hours for appetite to come on board. And “cold turkey” just creates ravenous hunger that a child simply doesn’t know how to remedy. It was not the right way to create appetite for him.
“He has reflux, that’s why he won’t eat.”
NOT TRUE! Reflux meds didn’t work, because the throwing up wasn’t reflux. It was from over-feeding with the tube.
“Maybe he can wean, but definitely not with a remote or virtual program.”
NOT TRUE! We live in Denmark. There is a 9-hours time difference from the GIE team. But it worked out amazingly! We talked with them or caught them on messenger in the evenings, when our kids were asleep. And doing the wean at home made it much easier to create trustful meal times.
"It’s impossible to wean from the NG tube. Your kid will never learn to eat unless he gets the G-tube.”
NOT TRUE! Of course, the NG wasn’t a walk in the park, but we didn’t want to go through surgery for G-tube, until we had at least tried to wean him. It turned out not to be an issue: he could drink from bottle even with NG, after less than a week. And solids are going better since we pulled the tube.
“It is all about finding the perfect bottle.”
NOT TRUE! We tried Avent, Medela, Pignion, Infatrainer, Playtex, Mam, Dr Brown etc. Nothing worked. We weaned with a random choice of bottle (Avent), and it worked just fine, because he was now hungry.
All in all: Don’t give up! We thought it was going to be impossible to wean our son, but it was so much easier, and most of all: He is SO much happier after the tube removal!
Stinne Kaasgaard, GIE Parent
*While weaning, we expect that a child may lose up to (but never more than) 10% of his or her starting weight. Weight loss should be monitored safely and joyfully during the course of a wean.