our team meeting didn't go quite like i'd hoped it would. the doctor didn't have any fluffy, wonderful news for us, and one of the surgeons we really wanted to talk to didn't show. instead of good news, we heard a lot of things that we already knew, were told that they've basically done all they can do in terms of Raef's GI problem, and that barring surgical options that they aren't aware of, they don't know what to do next. the phrase "quality of life" came up and i broke into tears.

what's a mother to do when the quality of her son's life is at stake? who defines quality of life? it can't be the same for everyone. even so, i'd hate to be the cause of my son's suffering yet i can't imagine our lives without him. i know they're trying to prepare us for the worst case scenario, but i have to wonder how close they think we are to that. is it days away? weeks? months? we still don't know.

needless to say, there were a lot of tears today. mostly mine.

a couple of positives worth mentioning; we got to kangaroo Raef for the first time today. it helped tremendously that Raef's primary nurse, Deb, and his other favorite nurse, Linda were working today.

i can't quite describe how amazing this was. skin to skin, just like it was meant to be.

when i see this, i just know that Reid was meant to be a father.

we each got to hold him like this for almost an hour. i seriously can't thank our nurses enough. without them, we would not have had this experience. no other nurse has offered to help us hold our son.

another positive from today is that Raef went down on his high pressure on the ventilator by 12 points. last night when we left, it was at 32, and tonight when we left it was at 20. to put it into perspective, he's been at nothing lower than 28 so far and in one day he went down to 20. pretty great. one main reason for this is that earlier in the day when Deb was suctioning his mouth (he drools a lot, and gets sticky spit in his mouth quite frequently) his vent tube came out. they replaced it with a bigger tube because he's gotten bigger since he's been there, and they were able to adjust his pressure right away. Reid and i had noticed for the last week or so that there was a pretty significant air leak around his vent tube. he sounded like a duck.

overall, i can't even say what kind of day we had. Raef's health = not so great but not so terrible. adorableness factor = skyrocketing.

i'll leave you with some adorable pictures.