Feeding tubes are a distant memory - a memory I'd just as soon forget. But I still occasionally receive emails asking for tube weaning advice. At least as a couple of years ago, there is precious little information to be found on the internet. Even the professionals, at least in my experience, don't really know what to do. I remember eagerly taking Juliana to the pediatrician, to the GI, to the occupational therapist thinking that surely one of them was going to help me solve this problem. At the end of the day, they didn't. I was on my own. That knowledge is simultaneously terrifying and empowering. If you're reading this and you're in this scenario, I know that likely you are already terrified! Please turn that feeling on its head and choose to feel empowered instead. There is a lot you can do! And ultimately, YOU are the person who will help your child tube wean.
Tube weaning is often a complex song and dance. There are many different reasons why a baby might have a feeding tube, and I think that most babies have a tube for more than one reason. I can't address all scenarios, but I can tell you about the factors that influenced Juliana's wean.
Diet. I always mention this first because I think it's a huge factor in a majority of tube-fed babies and kids. I don't know when Juliana would have weaned if I hadn't taken drastic measures with her diet. As soon as I began to pull problem foods from her diet (problems foods included elemental formula, which is supposed to be easily digested by anyone) her reflux was gone. She was happy. She started sleeping really well. She stopped pooping all the time. She became receptive to my efforts to desensitize her mouth.
Is your child's diet impacting their desire to eat? Some questions to ask yourself... Does it seem like he/she is ever in pain? Does he reflux? Has your child had antibiotics, especially as an infant? Has he had thrush? Does he have normal poop, on a normal (daily) schedule?
Fortunately there's a lot of dietary intervention that can be done even with an infant. Evaluate *everything* that your child is ingesting, including medications. There are many probiotic options, including one that is cultured on breast milk.
Ties. Tongue tie and lip tie can both affect feeding. I haven't heard of a scenario where this is the ultimate cause of the feeding issue, but I think it's worth considering. I did have Juliana's ties revised when she was put under for ear tubes. Revision might be tricky in a child with extreme oral aversion.
Happy Mouth. Keep the mouth happy. If the mouth is not happy, get it back to a happy place! I used to desensitize Juliana's mouth with brushing and rubbing my finger along her gums. The mouth is a vulnerable part of the body, so be sure that you do this gently. Perhaps ask someone to try the same exercise on your mouth, so you can get an idea of how sensitive the area is and how much trust and relaxation needs to be involved. See my post on Oral Aversion.
Stay Calm. This is hard. This is probably not your natural inclination. But it's really important to say absolutely calm around anything to do with feeding or therapy. Babies are smart and will pick up on it. Let your baby feel at ease. Never force. As I really became immersed in Juliana's world I began to find that my calm demeanor had enormous impact on her. Don't underestimate it.
Play Picnics. In addition to diet, I credit a lot of our success to the Graz style of tube weaning. We did a younger kid version of a play picnic (please read this, a great link with lots of info), which mostly involved Juliana holding a spoon and feeding me as I fed her. I think play picnics are genius and a very useful tool for an older baby/toddler/child.
Distract. When we began to wean, I often used the TV to distract Juliana. We would sit on the couch and I would feed her. She also ate very well at crowded or stimulating places.
You are the Expert. You know your child best. Not the doctor who spends ten minutes with you. Not the therapist who sees you briefly once a week. These people work for you. They may have good advice... or they may not. Critically evaluate everything they say and never be slow when it comes to seeking a second (or third, etc.) opinion.
The days with a feeding tube - the NG tube in particular - were the hardest days of my life. I wanted so badly to see Juliana's little face unencumbered by tubes and tape. I wanted to not have to insert it. I wanted to connect with her by feeding her. I felt so overwhelmed by the task in front of me: figuring out her allergies, getting her past oral aversion, teaching her how to eat, letting her feel the hunger/satiation cycle. It felt insurmountable. But we took things a day at a time - the only way to live life, really - and those encounters added up.
For some more resources, check out this post.