More Thoughts From The NICU

Sitting here next to Kilian, wanting to write a post about what happened on Friday night, and my brain just refuses to focus.

My mind keeps going to this possibly being the last time I see him alive. I'm arguing with myself to get those thoughts out of my head. They bring tears, and I don't want to cry here. I don't want the negative energy in his room. I don't want any of this.

I start to think about Kevin, who is sitting on his other side, just staring at Kilian. What is he thinking? What thoughts are going thru his head? And I feel bad...here I am, fiercely typing trying to keep up with my rambling thoughts, getting it all out before it eats me alive - but what is he doing to calm his soul? What can I do to help him? Why can I not help a damn person in the ways I want - not Amelia, not Kilian, not Kevin.

He speaks so soft to him. I could listen to him talk to Kilian for hours. He stays so strong for me. When we walked in today Kilian had just come back from his stats dropping. His nurse thought she would make him more comfortable and switch him to his other side. Apparently he didn't appreciate the gesture as much as she thought he would. He was so white when we came in, it hurt to look at him.

Kevin immediately reassuring me that it's ok, he's ok, we're ok. Sometimes I'm annoyed, and want to scream no..no it's not okay. None of this is ok. But I just look at him and it calms me to at least a point where I can regain focus, and continue on.

I wish it was Wednesday. Wednesday was such a good day. The evening obviously not so much, but the day I spent with him was the best day, and I want to go back. The jammies. His alertness, all sprawled out cool as a cucumber. Me basically climbing into his open isolette with him. He seemed so healthy. The thought of him pulling thru all of this was within arms reach.

I wish they would have taken him for surgery then. Today he seems so unhappy, so uncomfortable...with his chest catheter in, the IV back in his hand. He looks like he hurts. And it makes me hurt.

Tommorow morning is all I can think about. I picture them coming in to take him away, and wonder if I'll ever see those curious eyes so contently focus on me again. 6 hours. It seems like too long of a time for such a little body to withstand. And what about after? The pain he'll be in..I hadn't even thought of that until recently. I don't know how we're all supposed to this..

Deep breaths.

I sang to him tonight. The same songs I sang to Amelia when she was a baby.

"Blue looks good on the sky, looks good on that neon buzzing on the wall but baby it don't match your eyes. And I'm telling you, you 'don't have to cry', it's so black and white, 'it's stealing your thunder' baby blue ain't your color"

And..

"I tiptoed in the room, I know you got to have your rest. She said come lay beside me, I've been waiting since you left. She's sweet to me, must be the luckiest man alive. And did I tell you baby, you are the joy of my life'

My intent was to soothe him, inadvertently I soothed myself.

Whatever will be will be.

I want to stop looking in the rear view on the way to and from here, wondering if there was only ever supposed to be one car seat back there. I want Kilian to be able to breath. I want to be able to breath. I want him to get better so he can just come home with us. I want the surgery tommorow to be successful, and all of the what ifs to disappear as quickly as my breath does when Kilian looks at me.

Tommorow will be a good day. It has to be. And if its not, then I guess I will grab for whatever strength we have left, forever remember the time we were so fortunate to have with him, and hold onto hope that we will someday see him again.

But if he can continue on with the same strength and determination he has proven he has running deep in his veins, in every ounce of that tiny stubborn body, I think we have a pretty good chance of seeing him again.

He's still here beside me, but I miss him already. I'm not ready to say goodbye. Only to say see you later bub. We'll be waiting here for you when you get back.