Our third Father's Day with our little bug, and each one has been so different. He has grown so much, and so have we.
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|
It was on Father's Day 2010 that I had my biggest meltdown. Everyone else was at church when the doctor called to give me the update after rounds. We had been trying for almost a week to get him off the CPAP machine and onto just oxygen so he could come home. It wasn't working, at all. I asked Dr. C. if he would ever be able to make that transition, and she gently said, "I don't know." I could hear it in her voice, "This might be it." I couldn't believe it and it broke my heart. We did finally find a mid-step and make the transition from CPAP to high-flow oxygen, and down to the nasal canula that let us bring him home.
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.
But on Father's Day 2011, we found ourselves preparing to do more "quality of life" measures and less "life saving" measures. Aaron was doing well, very well. He was scheduled for his cleft lip surgery and his sedated ABR to finally check his hearing. He was also on the board for casts for his feet which turned up and out due to a very tight Achilles tendon which pulled a bone vertical instead of it lying horizontal like it's supposed to. He wore a sleeper that had the Very Hungry Caterpillar on it and the words, "but he was still hungry." And he was hungry. Hungry for life and for new experiences. He loved going out for walks and meeting new people. He was growing and developing and loving life. He was putting on more weight and gathering reserves to get him through the rough times. And we weren't (too) worried about his upcoming surgeries.
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.
The a of God hath made me, and the b of the Almighty hath given me life.