The Waiting Game

Today is going to be one of the longest days of my life.  We find out today whether they will discharge John today, and I'm going crazy waiting.

Last Saturday we finally talked the nurses into letting us take John into a rooming-in room to see how he reacts to a private atmosphere.  We were hoping some good quiet rest and fewer distractions might encourage him to eat.  I think they finally caved just to placate us, and the NP even said, "Don't expect him to do too much, he hasn't been eating very big volumes."  That morning before we got there, he had only eaten 5 mls from his nurse.  Within 8 hours of us being in the room he was eating 85 mls from us (way more than his full feeding of 53mls).  He had been doing so well in the room, we decided to stay the night.  They decided to give him an ad-lib test, meaning they'd let him eat decide when and how much to eat for 12 hours; if he did at least 75% of his total volume, they'd let him continue ad-lib.  It was pretty evident in the 12 hours that he really needed the peace and quiet and his parents--he did over 100% by himself!

His doctor was so impressed with his progress, so they took his feeding tube out on Sunday.  I decided to stay an extra night with him to make sure he kept eating since he has to do ad-lib for 48 hours before he'll be cleared to come home.  It was difficult to do it by myself that night, and I'm pretty sure I only slept for 5 hours over the course of 2 days, but it was so worth it.  They decided they want to fast track him out of the NICU since he does so much better with his parents.  HE NEEDS TO COME HOME!!!!

He has now spent the last few days prepping for discharge this week.  He got his Synagis shot yesterday to protect him from RSV, he got a bunch of tests to make sure he has no infections and to check on his kidneys, and today he gets an eye exam and his car seat test. 

The kidney ultrasound revealed two things: 1) His right kidney is still a bit smaller than his left kidney, which is probably causing high blood pressure 2) He has a freaking kidney stone!    The poor guy is too tiny to have a kidney stone, I feel so bad.  They think it's from getting too much calcium in all the fortification they've been putting in his milk (I'm biting my tongue right now, grrr).  They've stopped the fortification, and we'll have several follow up appointments with his nephrologist to check on his kidney growth and the stone.  They're hoping it will dissolve on its own over time.

As for his eyes, he had a little bit of ROP (abnormal blood vessel growth that can cause blindness) at his last exam last week.  Right now, he's an "eye hostage" meaning they can't discharge him until the eye docs give the green light.  Our neonatologist is pressuring them to discharge him since they know I'll bring him to all of his follow ups, so they made a deal.  If the ROP has worsened, he has to stay a week to have it checked again.  If it is the same or better, he can come home.  His vessels are very, very close to growing all the way out through his eyes, and he will be completely out of danger at that point.  Basically it is pretty unlikely that he'll have to stay, but then again anything is possible.

I don't know when the eye doc will get to the unit today, sometimes it happens in the morning, sometimes not until afternoon.  I know that I'll be staring at the clock all day until I get the final word.  I'm trying not to get my hopes up, and trying to keep the kids calm since they're freaking out.  They're staying home from school with grandma today so she can run them up to the hospital to meet their brother if he gets discharged.

Needless to say, I'm in freakout mode right now.  After 3 months of time dragging on and on thinking he'd never come home, the prospect of having my baby sleeping with us at home tonight is terrifying.  He is going to do well, and they're sending him home with both oxygen support and monitors since he still has oxygen desaturation spells.  It's not full apnea since he doesn't stop breathing, and his heart rate never slows down.  He just goes into such a deep sleep when he's really tired, he has shallow breathing and takes mini pauses.  Once he gets more stamina for eating, he should outgrow it.  Either way, I'm not going to be sleeping for a while until it goes away.

I feel so unprepared!  John gave the house a good deep clean for me yesterday before I could get home from the hospital, and for the millionth time I thanked God for giving me such an awesome partner.  Since that's out of the way, I've been washing baby clothes and blankets and double checking all our supplies to make sure we don't have to leave the house for anything for the next few days. 

So, to sum it all up I'll quote the greatest actor of our time from the greatest film of our time (Yes, I'm talking about Owen Wilson in Armageddon, haha!):  "I got that "excited/scared" feeling. Like 98% excited, 2% scared. Or maybe it's more - It could be two - it could be 98% scared, 2% excited but that's what makes it so intense, it's so - confused. I can't really figure it out."