May 29 - Day 30 or 31, depending on who's counting

Going with the flow.... Up and down.... good and bad.... it's a roller coaster, and not the fun kind.  A new development is that Ryan is now a candidate for a surgery to have his duct fixed.  Yesterday they did an EEG and found out that there has been some improvement in his lungs (presumably from the steroid), meaning the steroids did actually help.  Because there was improvement in the lungs, his duct started causing fluid to reach his lungs, which explains why his ventilation had to go up... it's hard to understand if you don't have a thorough understanding of what this 'duct' is, but the bottom line is that this is a new option that we didn't have before, so it's good.  The surgery is very common, but it's still surgery - he will have to be transferred to sick kids (via a tunnel linking the 2 hospitals) and we'll have to be there the day of the surgery and then he'll be recovering over there until he's stable again.  Then, he'll return to Mt. Sinai and Nancy and his team.  Sounds easy enough - but as we know, nothing goes according to plan, so I'm bracing myself for changes.  We don't have a set date for the surgery, and even if we get a spot, they do another eeg that day, and could change their mind about doing it.  I never would've thought I'd be happy about my kid needing surgery, but at this point, if it's going to help him, I'll take it. We've had some good quality cuddles every day and he's handling it very well.  He's doing everything a 'normal' baby does - he holds and sucks his soother, he's bright eyed and alert, and he's fussy when he has a dirty diaper.  All good things.  Welcome to our roller coaster.  My new resolution is that when I get any news (good or bad), I'm going to try to wait 24 hrs before entering into happy or panic mode... because things always seem to change.  They really mean it when they say take it a day at a time, but that's soooo hard!
When I was in the pump room, I heard 2 girls talking - they were from the level 2 nursery (where babies go after the NICU) - one had been there for 5 months, the other was on day 90-something... we're on day 31.... Focus on the now.... easier said than done.