NG tube feeding aversion and weaning

[Jenbug]

Hi, I am a mother of a 5 month old baby who is dependent on NG tube feedings since July 23, 2009 or about 3 months secondary to FTT due to GERD. She was born with a congental lung mass (type II CCAM) and had respiratory distress at birth and was in the NICU for 5 days. She went home without oxygen and was to return in 2-3 months for surgery to remove the mass.

She developed severe reflux and vomiting. During that time she recieved a battery of tests (modified barium swallow test and upper GI x-ray, upper GI endoscopy with biopsy, and 2 ultrasounds)- everything was all clear). Her suck and swallow were strong and there was no signs of aspiration. She was observed to reflux liquids starting at 15 cc.

She began to become feeding aversed and eventually extremely orally defensive. So much to the point that if I even touched her lips with a nipple or pacifier or sometimes breast she would gag and vomit and she would not chew or suck on her own fingers. I am an OT (although I did not specialize in feeding/oral motor issues) but I was able to work with her until she now allows us to put anything in her mouth (fingers, toothbrush, washcloths, toys, vibrating toys etc...). She will not suck on a bottle or pacifier but I attribute that more to her strong prefrence of wanting only the breast.

I continued to nurse her before each tube feeding to provide oral stimulation and promote peristalis. She began to start refusing meals after about a week of being on the tube. I would still offer her the breast before each tube feeding and some of the time she would nurse for a 2-3 minutes and a good 20 minutes at bedtime.

After her recent surgery, she began to refuse to breastfeed, take a bottle or cup. I am also working on solids. At first she was curious about the solid food and would taste but spit it out. Once she learned it was food she has become very tight lipped and will not allow solids to come into mouth. She also swats at the cup and turns her head away from the bottle. She has nursed a few times for a few minutes but usually spits the milk out or quits nursing when the milk lets down. She will allow me to put the bottle in her mouth at times but all she does is chew around on the nipple and spit the milk out.

I am seriously thinking of removing the tube (under a doctor's supervision) and just offering the breast or bottle only without supplementing with the tube and seeing what happens. She is very stubborn and it would probably take more than a day to get her to eat.

At this point, how could a speech therapist help me? Is there anything else to do that I have not already done? Does it sound like a purely behavioral feeding issue because of the 3 month use of the NG tube?