Slow and Steady

Today has been a very difficult day. Landon is still hooked up to a million wires (including a respirator) and they've been trying to get all his levels balanced all day long. Between his heart rate, respiratory rate, CO2 level, oxygen saturation, etc (those are only the ones I know, but there are others too) they haven't found that magic mix of meds and everything that will make everything happy.

Landon has been pretty "active" today but it's usually because he's showing signs of discomfort. It's been excruciating to see him flinch, grimace and try to cry (although it's not audible because of the breathing tube) and not be able to do anything to help him. We can't tell of course if he's in pain, or scared, or frustrated or what. They say that they are doing pretty well with managing his pain, and they have some interesting methods of determining pain cues, but it's just hard to know with such a small child.

We had hoped he would be able to come off the respirator (and get his breathing tube out) today but since he hasn't made much progress I'm not sure that will happen. It sounds like once they can do that he will be able to progress a little bit more with recovery since they'll be able to do some feeding by mouth, etc. I think Gary and I both feel pretty helpless since we can't really do anything for him. We can try and provide some comforting touch but that's pretty limited since there is so much stuff on him and since he's so sedated, it's hard to know if it really makes a difference. I've been trying to talk to him some just so he can hear my voice and hopefully be reassured by that.

I was telling Gary that during this whole process ever since we found out about his heart defect I haven't ever really had feelings of "why us? Why do we have to deal with this?" but in the last few days I've been feeling "Why him? Why does he have to deal with this and go through all this pain and confusion?" It doesn't seem fair- he's just so small and helpless. I know God holds him in His hands and that the Lord has a plan for him. God knows what he's going through and he has a reason for it, but that doesn't make it easy for us or him right now.

We also are both aching to hold our baby boy- the last time we held him was yesterday before surgery and we're not sure when he'll get enough stuff out that we can hold him again. He almost seems like a different baby right now just because he looks and acts so different. Anyway, not trying to dump our emotional burdens, but want to be real about what we're facing right now. I don't have time to journal AND do the blog so I think this will have to serve as both!

Thanks for the continued support- we love you all!