Transitioning your child off of tube feeding

I have received several Google hits on this subject. I thought that I would share the things that worked for Evan in the hopes that someone may find it useful. This is what worked for us, each child is an individual and what worked for us may not work for someone else. It is important that the child's GI doctor is consulted when you make drastic changes in your child's feeding schedule and diet.

Evan was not a hard case. His eating issues stemmed from several different sources. His number one issue was his heart defect. It is hard to develop much of an appetite when your heart is working hard to make sure that everything is being oxygenated properly. He also had to deal with reflux when he was an infant (he spit up a lot and very frequently). Small frequent meals were all he could manage during the day. He would not show any sings of hunger so I had to keep him on a schedule or he would go hours with out eating. He made up the calories he was not taking in during the day with a tube feeding while he was sleeping at night. All this led to him having very little stomach capacity. If he attempted to eat a lot of something that he liked his stomach could not handle the large amounts and would end up throwing up. We had to do something to stretch his stomach before we could get him off of tube feeds.

Evan's doctor and I decided to switch from feeding him a small amount per hour over a long period of time at night to giving him bolus feeds (a larger amount over a shorter period of time) during the day time. We would gradually speed up the bolus feed and increase how much we gave at one time. A lot of throwing up ensued when mommy or daddy pushed him too much during a bolus feed but eventually he was able to take eight ounces of Pedisure over a half hour. The doctor had deemed this our ultimate goal since kids his age were able to take in that much on a regular basis.

Once we knew that his stomach had the capacity we started dropping how much Pedisure he was getting. As we did so his weight was carefully watched so that we could see if he was compensating for the calories that he was not getting from his tube. Every time he was weighed I would hold my breath hoping that he was still gaining. Every time he was which made me very happy.

You can see that Evan's transition off of the tube was rather smooth. We did not have any oral aversions or strong texture issues to deal with. I think that my insistence that he eat orally during the day helped that since, even with tube fed kids, oral stimulation is still very important. I also think that having him get the feel of real food in his mouth was important. A dietitian that I saw to get ideas on how to boost Evan's calorie intake wanted me to feed him more pedisure. I did not want to have Evan on only pedisure since as good as a formula can be it is still artificial. I felt the he needed a variety of real food in his diet to keep him healthy and happy.

I hope that this is helpful to someone some day. I think that with out reading about the things other parents were trying I would have gone insane with worry and frustration especially since early on we ended up with a GI doctor that was not very interested in helping us transition Evan off of the tube. Once we got a more caring doctor that was willing to work with me and listen to me things really started taking off. Evan is now a pretty normal picky toddler that hates to eat his vegetables.

Evan enjoying a tube feed while watching a video. It was the only way we could keep him still in his chair long enough to give him his bolus feed.