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He is very cute! I am glad you got some clarification, it sounds like you will just have to wait and see for a while, which sucks
Sometimes these little guys just don't like to play by anyone else's timeline. The 24/7 aspect of maintaining his airway at home could be a lot to handle, especially with a toddler at home. I did respite care for a couple with a baby who needed lots of airway support (as well as continuous tube feeds, and a g-tubs), where I watched him at nights so at least they could sleep. That was expensive for them though, they replaced me with a full time live in nanny after about 8 months, so I am not sure how he progressed after that point.
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I got some further clarification from the doc, as she is transitioning off of him, we get a new doc Monday (which is so frustrating!). Basically the thought is since he's 36 weeks, the NICU is not meant for long term care/recovery, and he may need to transition to a different facility to continue growing and progressing before coming home, not that he would never be able to come home.
In the past week they put him back on a canula with room air, and on daily caffeine. Since then his desat alarms have gone down significantly, and he lasts several hours (like, sometimes 12+) without needing suctioning. I think that means he must be swallowing his secretions, at least some of the time. They did a swallow study which he failed, but the PT said she saw him swallow, so there's hope that he just needs some more time.
Thanks again to all of you for your thoughts and advice.
@MsMini: I asked about just taking him home as is, but they said he'd be too much to handle, especially since he still occasionally had Brady alarms needing moderate stimulation, which I guess the next step is CPR? So hopefully when he's ready to come home he'll be able to deal with his body better, I know we couldn't be alert 24-7 which is what he needs now.
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@beaker: I've been thinking of you and your lo. how is everything?
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@wheres_c: lots of changes
ill put a new post on this board soon. Long story short, he just underwent surgery for a g tube, and should be able to come home in the next couple of weeks, where we will work on oral feedings with him. Thanks for thinking of us!
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@beaker: I've been wondering how you guys are too, glad to see a smiley face in your response!! We are all rooting for you guys!
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@beaker: That's great news! Humble apologies for not getting back to you on the other questions... I have been really sick and working ridiculous hours and didn't have time to contact my friend who would have the details on both facilities.
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@beaker: Great to hear! Having him home will hopefully be a huge morale booster. There's nothing like being able to snuggle your baby without the watchful eyes nurses and doctors ( as wonderful as they are!!) and millions of cords and alarms.
Keep us updated!
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@beaker: We were one week away from getting a g-tube (surgery was scheduled) and I was actually looking forward to it since feeding was so difficult! I hope it relieves the pressure and that you can get oral feedings down in the meantime. (And I hope you get out of there soon!)
Sometimes these little guys just don't like to play by anyone else's timeline. 
ill put a new post on this board soon. Long story short, he just underwent surgery for a g tube, and should be able to come home in the next couple of weeks, where we will work on oral feedings with him. Thanks for thinking of us!
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