Heart Surgery, What?

I'm sorry I didn't update you about Skyler having heart surgery sooner. It came so suddenly that there wasn't much time to process it, much less write the details down.
They started Skyler on steroids last Wednesday night, Feb. 8, and we could see the difference in him immediately. The very next day he seemed more at peace, even happy at times-- not constantly grimacing or looking uncomfortable. The video Chris made shows some of these moments. Skyler's lungs have been inflamed with fluid in them for about a week and a half before he started the steroids. It's been pretty irritating and stressful for him. I was constantly thinking of what I could do or suggest to the nurses to make him more comfortable.
When he's uncomfortable or agitated, he likes to move his head to one side or the other, but with the stiff ventilator tubes attached he can't. Sometimes, I look in his incubator to see the ventilator pulling on his face because he has moved, or he's frustrated because he's trying to move. I try to help him with that.
It's hard knowing that he can't make a sound when he's in distress because he's on the ventilator. It's almost automatic to look over at the other baby in the room when they cry or fuss. But he doesn't have that luxury. Most nurses leave him be for a few hours if his vital signs are good. But that doesn't always mean everything is okay. For instance, one time I lifted the blanket on the top of his incubator and looked in to see him stuck partly face down in the bed, smashing his nose and face, with his skin being pulled to one side by the ventilator. He had tried to turn his head.
But with the steroids, there has been less to worry about. He seems more content and less anxious to move because his lungs aren't being as irritated. Right away the steroids made his oxygen needs go down. During the week and a half before he got the steroids, his oxygen needs were anywhere from a 40 to 100 percent; With the steroids he has been consistently around 22 to 27 percent, close to what we breath. The inflammation in his lungs also went down.
So you can see how it was surprising when last Friday night the nurse practitioner told me that they wanted to do heart surgery within the next few days. Apparently, although the steroids are helping, his heart is still having to work too hard, causing extra blood flow to the lungs and heart enlargement. They did an echo on Friday and saw that the PDA, or opening in his heart, had gotten bigger. The doctors do an exam that gives number they use to determine how hard the heart is working and the risk of heart failure. The normal number should be under 100. His test, about 5 or 6 days ago, showed his number was at 200-- still higher than we wanted it to be but an alright number. His test on Friday was clear up to 2,000. Something they were pretty sure was being caused by the PDA.
The NICU team wanted to do the surgery to close his PDA while he was stable. This took me off guard. He was doing so well. I wasn't prepared for things to change so quickly-- You think I would have learned by now.

Although the surgery seems scary to us, it's pretty routine at the University of Utah Hospital NICU. It's not like open heart surgery; the arteries they work on are just away from the actual heart muscle, and they enter in through his side and put a clip on the vessel right outside of his heart. Of course, some of the risks are higher because he's under 2.2 pounds, but that's how it has been all along.