Also, wanted to mention .. there is a preemie support community which is great, too, for your ?'s outside of the reflux ..
http://www.medhelp.org/forums/show/250
C~
Silent Reflux is what it sounds like your bundle of joy may have. But I'm not a Dr., just a patient like yourself with alot of experience. Silent reflux is when the fluid comes up the esophagus and doesn't come up high enough to A) be seen, B) come out the nose or C) vomit so you really don't know (except for the high pitched crying or apnea at night or future development of asthma from aspiration issues) that your baby has reflux!
Even the most sophisticated reflux tests WILL ONLY show reflux IF and I repeat IF it is happening during the test!!! So an Upper GI may miss it; a 24hr PH probe is the best one probably to confirm its activity. But I don't know if they do that on such tiny infants?? A good ? to ask, though. Oftentimes they will do the meds to see if there is any improvement first b4 doing an invasive scope or probe, etc.
Being a CT scan was done there are no physical anomolies that can be seen causing this which is good news.
Reflux oftentimes is assoc with preemature babies due to immature GI tract. This eventually catches up with the baby and development but can cause issues as you describe in the meantime.
The reflux comes up and the hot acid hurts alot, causes inflammation to the esophagus which becomes red/raw and then is reswallowed .. this could cause apnea, and/or aspiration which can cause pneumonia or asthma if left untreated.
Keeing baby in a semi-upright position to sleep helps the law of nature to keep it down vs. coming up. the hospitals sometimes use a TUCKER SLING ... you should ask about that if that is feasible along with the other meds/protocols being used.
My heart goes out to you.. you have and continue to be through alot .. but we are here for you ................
WELCOME TO the GERD (Reflux) Community!!!!
Cheryl (3 of 4 have reflux ages 17, 15, 10 & 9) But pretty much fully outgrown .. just a bit here and there but as infants/early toddler was very significant.