Ella is NG tube free! She has been NG free for a little over a month now, but I have been scared to say anything in case I jinxed it. We have seen all our specialists now and they have no concerns, Ella is gaining weight, is staying hydrated, and taking all meds orally (10 doses a day)! We are so amazed with our little oral eater!
Ella has had a long road with feeding. She was NG/NJ fed her entire life up to just over a year old. We had tried so many ways to get her to eat, but nothing was working. We were constantly battling vomiting and what we thought was oral adversity, until we found Growing Independent Eaters and their weaning group.
Unless you have had a child with a feeding tube for an extended period of time, you won’t realize just how difficult it is to wean from a feeding tube. Many times I would hear “just pull the tube, she’ll eat if she is hungry enough”, but the problem with this approach is that Ella had never once eaten orally in her life. Ella did not know HOW to eat, let alone what hungry felt like or what to do to satisfy that feeling.
Ella was also battling vomiting multiple times a day, and not just typical baby spit ups that are expected. She would throw up at least half to her entire feed when she started to vomit. I was fiercely under the impression this was a severe reflux issue, but after doing research with GIE I learned that vomiting is a common issue with tube fed kiddos. Why is that? Tube fed children are typically overfed. We, as parents, are given a standardized number by the dieticians that the a child needs to thrive 100mLs/kg, we give this to our child by tubing it into their little body. The child cannot tell us that they are getting full by refusing to eat more, and will instead get so full that they vomit to relieve themselves. Sometimes a child will vomit so much and so often that they won’t gain well or at all, some medical professionals take this as the child needs more food, and up the volume, and the vicious cycle continues.
So, what I thought was reflux was actually Ella being overfed. Once I realized this I went down on the amount of food I was giving Ella. Not a lot, only 10mLs/feed (that is less than a Tbsp). Ella’s vomiting went from 7x a day to 1-2x if at all. The most amazing thing about that, was that because Ella wasn’t stuffed like a turkey all day, she was actually interested in some oral food. She started to eat 1 Tsp of purées here and there. With Ella no longer vomiting as much, she actually started to gain really well.
I was so impressed with the little progress that we had gained from what I learned with GIE, that I decided I wanted to work with them some more.
GIE is a home-based feeding tube weaning program run from the U.S. They take an approach with weaning that I could get on board with. They don’t cut feeds cold turkey, they respect a child’s cues, and help foster a trusting relationship for the child and eating. So many of these tube fed kiddos are traumatized by eating, they have severe oral aversion that take time to overcome. I could respect GIE and their principles, whereas what I had been hearing locally for help was not comforting, and I was feeling unsupported.
Kevin and I hired GIE to create a weaning program for Ella. GIE’s weaning programs are fluid (you can go up a step or down a step), depending on the child’s needs, there is no timeline to follow, and is based on the child’s cues and readiness to move forward. After getting approval (finally) from Ella’s specialists at 11 months old and using GIE’s advice, we were able to wean Ella in less than 4 weeks. Ella went from 100% tube-fed to 100% oral in almost no time at all.
However, weaning hasn’t been all roses, it was very stressful on myself and Kevin during the wean, and for the few weeks that followed. It was hard to let go of our safety net and trust that Ella knew what she needed. In the beginning she was not drinking more that a couple oz of fluids a day, but each day has improved as she has gotten more confident in her hunger and thirst cues. It has also been a learning curve in watching her appetite wax and wane over the week. I was so used to tubing her the same amount every meal, every day, to let go of that was difficult. GIE always says that tube weaning isn’t just for the kids, it is just as much for the parents, and they couldn’t be more right.
We are all very happy to be done with inserting NG tubes, replacing tapes, minding grabby little hands and all the other fun stuff that comes with a feeding tube, and are look forward to our new journey with a happy oral eater! Here are a few photos and videos of Ella’s feeding journey so far.