5 Mo. old only sleep eats--Help!

I am so glad I found this group.  I feel like we are alone in this as our friends and family just don't understand.  Our 5 month old son spent the first 4 months of life in the NICU, and the first 2 1/2 in an induced paralytic state.  Due to this, a bad case of thrush, and his severe reflux, he will not take a bottle while awake.  He has been on reflux meds (Zantac, Prilosec, Reglan, Baclofen, etc.) since 3 months of age and has been seeing speech and occupational therapy since 3 months of age.  He has also had an NG tube in since birth.  We were able to completely bottle feed him while awake for 4 weeks, but at the suggestion of his therapists, we put the NG tube back in.  The plan is to sleep eat at night and NG feed anytime he's awake, so as to slowly erase the negative association he has with eating.  I don't think it's working and I think the NG is making his vomiting/reflux worse as it causes the sphincter to remain somewhat open, allowing food an easy path back up the esophagus.  He used to vomit after every feed, but we've been able to reduce that to 2-3 times a day.  Currently, he eats 100 mLs every 3 hours on the dot.  We have found that consistency is the key to helping control his vomiting. 

It's very frustrating because parents should look forward to feeding their child, and it's become such a chore to us.  He's a very happy baby....until he sees the bottle and knows it's time to eat.  We feel homebound because he will not eat if there are ANY distractions to wake him and we are always in fear of him vomiting.  We are so very grateful for his life, because he almost did not make it, which makes it hard to even complain about his feeding issues. 

I'd love to hear your experiences and find what has worked for you and has not.  It's such a relief just to know we are not alone!