Hi I'm New

Hi,
I as I sit here pumping at 3:45am I feel like I am finally ready for a support group so here is our story (sorry, long!). My DS (3rd child, 1st boy) was born at 32w4d last Nov with but hours of warning and was in NICU for 31 days with A's & B's, PDA, PFO (both now closed), low gluclose, hyperbilirubinemia, vented, CPAP and then nasul cannula. Took forever to finally get him to eat. Released home with an A+ report and they didn't even want to schedule a follow up at the preemie clinic. Well as soon as we got home the problems started. Reflux was diagnosied by our Ped one week later and then 2 weeks after that he suffered an ALTE and ended up back in PICU and then Peds for a week each. Anemia, UTI and GERD is what they chaulked it up to. He was put on prevacid and an apnea monitor. 2 ER visits in the winter for respiratory issues and then a PH probe in the spring which surprisingly came up negative for reflux. We took him off the meds in May and had an uneventful summer. We figured that coming off dairy was the cure!

Around mid-july I started getting concerned that he wasn't hitting his milestones and by end of September we started PT & OT and were told he had mild hypotonia throughout his body along with poor to fair muscle strength in his trunk and neck and mild to good muscle strength in his arms and legs. He is 2-3 months delayed in gross and fine motor skills. Around the same time we started PT & OT we noticed that his reflux was getting worse to the point he went back on the meds. However, feeding difficulties, nursing struggles and a chronic cough soon developed. We just returned home after a week in the hospital because the coughing was so bad he couldn't catch his breath after awhile. He was admitted as FTT and after a bunch of tests found he has mild pharyngeal dysphagia with vocal penetration in addition to the central hypotonia and documented reflux in addition to FTT, mild oral aversion, mild sensory issues (doesn't like his hands touched) and relative macrocephaly (head went from 3% to 75% over 4 months and body went from 25% to 3% for actual age in 2 months) He has an MRI scheduled for next week and is home on an NJ tube while awaiting the results from the MRI but it's looking like a Nissan Fundoplication is in his near future.

I'm going nuts trying to figure out what the main underlying cause is. I'm convinced the MRI will give us the answers and am counting the days. (8!) They ordered it twice while we were in the hospital but for various stupid reasons it kept getting postponed.(argh!)
He is such a sweet baby and now that he has the NJ is actually sleeping through the nights for the first time! It breaks my heart to have him be going through this. He wants to be mobile so bad and follow his sisters around but the best he can do is roll and inch worm a little (at 12/10mo).
Anyway, that is our story (the short version!LOL). I'm looking for others whos LO's may have had some or all of these things or who just plain know what it's like to have your whole world turned upside down just when it starts to right it's self ... again and again!