Huge disclaimer: I'm not an expert on oral aversion or feeding issues. Every situation is unique. But I do want to share our story and how I helped Juliana overcome her oral aversion.
Late one night I wrote a list of things I needed to work on with Juliana. One of the things on that list: get her to burp without vomiting. Juliana had become so sensitive that a burp, a cough, or too much crying could cause her to vomit. We had a lot of damage to undo before she could even begin to reacquire eating skills.
Juliana's oral aversion began when she had great difficulty eating due to digestive pain and possibly some reflux. It peaked when she began vomiting violently. In the aftermath I was left with a baby who would gag to the point of vomiting if something (bottle, pacifier) was put in her mouth. She was overly sensitive and did not associate eating with pleasure but rather with pain.
The first step was to get to the root of the problem, and in retrospect it took awhile to do that. We went from breast milk, to breast milk on a Total Elimination Diet, to Neocate (fail), to Elecare (pass). During all of this we also gave her Zegerid, a proton-pump inhibitor that seems to help most babies with reflux. It didn't really help Juliana - I think that her reflux was minimal to begin with and I later determined that she was also reacting to the drug.
I do believe that a g tube could have been entirely avoidable if we had just figured out the problem sooner. She would have needed an NG tube for awhile but I imagine that she would have been taking full feeds by the time she was a few months old. I hate that this was avoidable but I don't blame anyone for it. Even now, Juliana's digestion is still a bit of an enigma to me.
Our second step was to get rid of the NG tube. The NG tube is such a catch-22: it gives your kid a way to eat but it also increases their oral aversion so that they don't want to eat orally. I was so glad to be done with it.
After g tube placement I gave Juliana a few days off to recover and to become accustomed to the sensation of a tube-free nose and throat. Then we began working in earnest. Her GI issues had been taken care of but the lingering effects of the trauma were still very much in her memory. She would gag, usually out of the blue. The gagging would turn to retching which would turn to vomiting. She has always been very communicative and I found that if I spoke to her in a comforting but somewhat firm voice I was able to convince her not to vomit. When that failed, I would quickly empty her stomach before she had the chance to expel anything (a huge benefit of the g tube, at the time). I figured that dry heaving is less damaging to the psyche than actual vomiting. During this time of extreme sensitivity I gave her very small, frequent meals. I also stayed away from continuous feeds.
Things slowly began to improve over the course of the next month or so. After awhile I noticed that Juliana had a pattern where she was much more likely to gag between the hours of 2AM and 11AM. Why those hours - I have no idea. But I really began to focus my efforts to those time periods in order to ensure a gag-free day. She would usually start to gag at times when I was not holding her, and I would run to her as soon as I heard the tell-tale sounds. I also tried to encourage her to burp or cough without gagging/vomiting.
As we worked past these habitual behaviors I also began to slowly desensitize her mouth. Eventually I was able to put a bottle into her mouth without any trouble. Unfortunately, she lost her suckling reflex after the vomiting spells caused an oral shutdown. Not too long after this I began spoon feeding her broth and I was thrilled that she would allow me to feed her this way.
It seems so simple: remove offending food, heal GI tract, encourage baby to stop vomiting, desensitize mouth, work on oral skills. But it wasn't easy. It really has to be done with great sensitivity - for instance I would always work with her in a quiet place which was not always easy with a rambunctious older brother running around. And there have been many times when I feared that I pushed the envelope too far and that I might undo some of the progress that we made. Fortunately any setbacks we experienced were minor and quickly overcome.
We still have some work to do but we've come a long way. Today Juliana can drink with a straw and most of the time she loves eating solids. I am really excited by her progress!