"There and Back Again"

This afternoon, we checked Ayden's oxygen saturation.  As happened not that long ago, they came up somewhat low.  Unlike last time, we believed the lower readings (especially after we got the same thing from a second sensor).  We took them while he was sleeping (when sats will tend to be lower).  When he woke up, they were within the acceptable range, but barely.  An hour later, we tried again.  They were still a bit low.  This time, we didn't bother to call the clinic, except to let them know we were on our way after we were already in the car.  (English, Ayden's first doctor - when she was still a resident in the NICU - just happened to be the cardiology fellow on call.  It's very comforting to talk to a familiar voice that is also familiar with Ayden.  We are very happy that she has moved on to the cardiology department now that her residency is over.)  Long story short:  the doctors were not concerned and we are back home.  Basically we were told to expect somewhat lower levels because Ayden is getting closer to his second surgery and because, as he gets bigger, the shunt that allows blood to backflow into his lungs gets comparatively smaller.  As long as he stays above 70, we are apparently okay.

I had planned a separate post about this issue, but I'll simply summarize here given the day's events: although Ayden continues to do well, we are holding our collective breath until surgery #2 has come and gone.  His body is still so delicately balanced.  I rejoice at his health and stability, but I know it can chance at a moment's notice (or worse, without any notice at all).  He just needs to hang on until the Glenn.  Today was a reminder of that.

Ayden did exceptionally well with his visit to the ED.  Despite arriving a little after he was supposed to be fed, he was a happy and talkative baby for a good hour and a half after we arrived.  He handled all of the poking and prodding without lodging a single complaint.  Finally, two hours late, we were able to feed him.  About halfway through his food, he got really pissed off.  It took what seemed like forever to get him calmed down.  Then, 10 minutes later, he pitched the biggest fit of his young life.  Again, it took a long time to calm him (given the already extra work his heart is doing, his tantrums are beyond stressful for me - I always worry that this will be the one to upset that delicate balance).  After realizing he was nothing more than completely exhausted, we basically checked ourselves out so we could get him in the car and asleep (which worked like a charm).

He was so sleepy because we inadvertently woke him up on two different occasions this afternoon from what would have been his big nap of the day (we were checking his sats both times).  Except for a few cat naps, he basically hadn't slept all day, despite my best efforts to comfort him and get him to rest (I think I fell asleep before he did):

Clearly, the whole experience had taken its toll on Ayden by the time we got home tonight:

I've had a rough day.