This crazy year is almost over!

Sitting here on my bed - Macsen beside me sleeping in his NapNanny. He's laughing again - playing with the angels my mom says. We know so many angels now - Rowen, Riley, Anya to name a few. We think about them all the time - these tiny little heart warriors we rooted for, prayed for, loved and cried for. Maybe they come play with Macsen in his dreams - make him laugh out loud (which he has yet to do while awake but lets loose with big chortles while asleep.) and they whisper to me to love him extra everyday - for them, for their parents who had to say goodbye to their tiny little loves before they grew out of their baby wrinkles and folds.
We had a sort of rough day yesterday - we had a few blood streaked diapers. Thanks to my fancy iPhone I was able to snap a pic and send it to his nurse in Philly. She wasn't super worried as M wasn't extra fussy and his oxygen levels/pulse rate looked good. Just have to keep an eye on him - as if we weren't doing that already.
He had his last echo of the year this week too. Everything looks good - his shunt, arch and arteries are all looking good. In fact, we were able to lower his lasix (diuretic) dose down to 1x/ day! He's hovering around 10.5 lbs but is still steadily, if slowly, growing. He's been happier too - some of that was from getting his reflux meds under control and some of it is getting his natural schedule figured out. Baby wants to be bathed and in bed no later than 6:30. Do that and he's asleep in minutes without tears - wait 20 minutes too long and he's an inconsolable mess. He also wants to sleep until at least 9 am. He wakes up almost every hour still to eat but doesn't really open his eyes until 9 or 10 am.
He slept through Christmas morning!
I was very grateful to be in our own house for Christmas - we just didn't know 3 months ago where we would be. We had a lovely day with my mom, Aarons brother Sam and the kids - and my sister and her family drove down too. The girls were so happy playing with their older cousins and cried today when they had to leave. It was a little bit of normal in our isolated life.
Only 2 more months of living like this and hopefully little man will rock his second surgery, the girls can start living a more normal life and we can relax a little again.
Next week M's local doctors are both closed for a whole week so no appts - no appts for a whole week!!! That's a first for M. Kind of nervous! We'll still touch base with his home monitoring team everyday though.
I will be happy when this crazy year is over. It's funny because last year we had a really great year and in January of this year - before we even knew we were pregnant my sometimes clairvoyant husband turned to me and said this will be our worst year - our hardest year. Yep. It was, so far and hopefully by far, our toughest year in the 13 yrs we have been together. Praying 2013 is a little easier on us.