Ok, here's a super long update on how baby beaker (aka D) has been doing. We transferred to a different hospital last week after we had another swallow study that didn't show progress, with the intent to get a G tube put in, so he could come home. We only had to transfer because our original hospital's surgeon went on his honeymoon, but we were transferred to one of the top children's hospitals in the US, so we didn't mind, and didn't want to wait on the surgery. There was some initial debating when we got here about if we should get a Nissen done at the same time, which we ultimately decided to do. D had the surgery Tuesday night, was pretty drugged up on morphine yesterday but is more alert today. He's tolerating food through the tube well, and will be back to his full volume also this afternoon. We chose to do the surgery since they assessed that he's still not ready for oral feedings (he doesn't adequately protect his airways, and could easily get pneumonia) and the feeding tube he had through his nose can actually inhibit him figuring out how to swallow effectively. We went with the nissen since he has some reflux issues, which they expected to get worse with the g tube, and we didn't want to risk not doing it and him having to come back for another surgery.

Other good news is that D got an MRI, which did not show any significant brain damage from the prolonged lack of oxygen when he was born (woo hoo!). The hope/expectation is that he just needs some time (neurologist said maybe 4-6 months) to finish sorting out oral feedings. Once home, we can work with him (along with physical therapists) to progress to full oral feedings and then get the G tube removed. I'm confident he will be able to figure it out, given that he's already improved so much on sucking and swallowing. OTs here have heard him swallow with a stethoscope, both by giving him drops of cold breastmilk and by just sucking on a pacifier. I wish he would have done that during his swallow studies, but oh well! One OT noted that he needs to sort out the sequence of suck, swallow, breathe, which is hard to do just with his own spit, not very motivating!

We'll probably be transferred back to our original hospital before going home, since he needs to be on continuous feeds for two weeks after the surgery. I think the environment there is better for him... This one is a teaching hospital, and docs here almost never interact with the babies (they say the residents are supposed to examine them each day but I have yet to see it, and I've been here for a 36 hour stretch before), they don't even enter his room when they round on him! He's also in a private room which I actually think is detrimental for him with how alert he is at this age, versus the open bay at our old one with 10-12 babies in a big room where he gets a lot more drive-by attention and interaction when we can't be there. The hospital we're at now has a fantastic reputation, and I'm glad that we got to use one of the top surgeons (he has done over 3000 g tubes) and got an MRI done and spoke to a neurologist, but the day to day environment and attention is not what I would prefer.

The plan is for us to go home with monitoring and suction equipment, although he rarely alarms anymore and needs way less suctioning. I may just be riding a high from the MRI results, but I'm feeling pretty positive today Thanks again to all of you for thinking of us, I truly appreciate it so much.