Tuesday, August 7, 2012

Catching our Breath




While I was on bed rest in the hospital, I don't know how many times I heard doctors/specialists talk about Skyler's future quality of life. They said no one would judge me if I decided to be "induced" right then, or in other words, abort my baby. It was my choice, they said.

It was difficult to talk about Skyler's future quality of life. We didn't want to be selfish if our son was basically a vegetable and keep him alive just because we wanted him to be alive. So I always said, "No, save him. If he's brain dead we can always pull the plug later." I told the four different doctors that were in our delivery room that day the same thing.

Now, it's hard to believe we ever wondered about Skyler's quality of life. He's like a normal three-month- old baby...who just happens to be seven months old :). 

He's been off oxygen for over a month now. He smiles a lot more and he's starting to try and talk to us. It's my favorite thing. His sweet blue eyes look into yours and he just coos, as if he's telling you the most important thing. Oh, I love it!

I know this is one of the many things that is considered normal when you have kids. Yes, they goo goo and ga ga, then they smile at you and start to laugh. This is what babies do, and there's tons of babies out there. But I love that when I slow down for a second and really think about it, there's nothing normal or average about it. 

When Skyler had heart surgery he was only about 1lb. 13 oz.; He couldn't make any noise because he was on a ventilator. And chances were high that his vocal cords would get damaged during the surgery because he was so small. He tries to talk to us now and his voice is clear, not raspy or damaged. he can focus on our faces because his brain and eyes are functioning properly. He can smile because he's happy. Oh, I love it.

We actually started taking Skyler places right before we left Utah. He goes with us everywhere now. We don't let young children touch him, we sanitize when we get home, and we keep him away from smoke, but other than that we aren't too worried. He's been off oxygen for a month now and his lungs seem strong, so I think that makes a big difference. Plus, it's the summer and it's not RSV season or anything.   

Skyler is sleeping for longer stretches through the night. He usually sleeps at least four hours in a row but one time he slept nine and a half hours! That was amazing.  

It's nice because Chris and I have some free time since neither of us are working right now. We have been here for a month and Chris doesn't start school until Aug. 14. It's given us time to get settled, spend time with all three of us together, and catch our breath. Yay for that! There was a time when I wondered if things would ever calm down, and they definitely have. 
  
Skyler's checkups 

This month Skyler has an eye exam to make sure his ROP is gone, or continuing to regress. He will also have an appointment to check his heart to see if everything is still looking good from his heart surgery.

They are also going to check on the fistula-- the abnormal connection in his heart, and the other small hole they discovered during his heart surgery. They rarely see fistulas I guess. The head neonatologist of the U of U NICU said he had only seen it in one other baby in his career. It could be one of those things that doesn't affect him his entire life. And if he wasn't premature, we may never have known about it. Only time will tell.

He also has an appointment with Early Intervention this month. It's a program for premature kids like Skyler. They will tell us how he is doing developmentally and give us things we can do to help him progress. 

 It would be nice if we don't get news from any of these appointments that rock the boat, especially when we're sailing on such smooth waters right now. But there's no use worrying about that. Skyler has always pulled through anything that's thrown at him.