The little preemie outfit was too big for him when he came home from the hospital two years ago. We had to roll up the sleeves, and his feet didn't quite reach the bottom of the sleeper. He was SO TINY. As I look back at pictures, he doesn't look that small to me, until I notice the GIANT hand holding him. But I forget how frail he really was.
Father's Day 2010
Father's Day 2010 |
About 4 lbs, 2 oz |
But it reality, the NICU wasn't sending him home to live. They were trying to get him stable enough that they could send him home to make some memories here before he died. That was the expectation. And I can't fault them for that. I've seen too many times where hospitals tried and tried to get these little ones to the point where they could go home to do well, and then their little bodies just give out and they never make it home. So I'm grateful, so grateful for all their help.
Playing with Daddy |
Father's Day 2011
Fast forward one year. We went through MANY hospitalizations, emergency ones. He got his g-tube and trach. We didn't do anything that wasn't absolutely necessary to save his life. It was a time when I actually slept better in that unique environment called the PICU than in my own bed. Yeah, it was easier to sleep with lights on, people going in and out, and in a strange place than the quiet, comfortable dark of my own home. Because there, I had a whole team of professionals looking out for Aaron and I could relax. Not so at home.
Big Smiles! |
Father's Day 2012
Today, our third Father's Day with Aaron, is going to be a wonderful day. He now wears the biggest sleeper in the first picture. Yes, we're still hyper-vigilant. He's still got the ability to turn plans upside down. But he's doing SO WELL! We're finally back down to where he should be, and where he was, on his oxygen before his last illness in April.
Even so, yesterday I got a phone call from William. He was helping run a Cub Scout activity at a local church. The Lone Peak Fire Department went screaming up the road into Alpine and he called just to make sure they weren't headed here. At the time, Aaron was sleeping peacefully. I hope they were able to help where they were headed, but oh so grateful I have no knowledge of what they were needed for.
Right now, it looks like our biggest challenge with him today will be to see if we can get "awake" pictures. Yeah, he played until about 4:30 this morning, after being awake almost all day yesterday. I like days like this, where he acts like a normal baby (or teenager - awake all night, sleep all day??) and just sleeps and eats and plays. He's getting stronger every day. He's actually the same size his siblings were at this age. The size where we're trying to decide if he's really outgrown that outfit, or if the next size might be a touch too big still.
He and William still share that very special bond. I find it amazing that often over the past few years, when he's been looking really bad and I call the ambulance, by the time they get here, he's doing okay. Not great, mind you, but okay. And it's because Daddy's holding him. There's a special connection there that let's his body relax and keeps him going until help can arrive. It often lasts us all the way to the hospital (but then all bets are off). In fact, the two times that he's been really dicey were the two times Daddy was out of town and wasn't around to help.
I have a feeling that this will be another wonderful Father's Day. We are so grateful to have Aaron here with us. One mom posted on his birthday that:
Aaron, you're such a happy boy, you bring so many people such happiness and joy.When I see your beautiful face smiling on my screen, it makes me a little nicer, a little less mean. You make the world a nicer place for people to live, you're God's little miracle which he was so kind to give."When you can influence the world in that way, even if it's just a small corner of it, life has meaning.
This made me cry! I am so happy for your little guy. May he continue to do well, and I hope he can continue enjoying Father's Days with his daddy! Soooo sweet. :)
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