Thoughts From The NICU

Skipping ahead for a moment, as I sit here next to Kilians isolette, watching the numbers on multiple screens, understanding what about 75% of them are and where they should be. Watching him move his little feet and hands, wondering if he's dreaming and what of. Listening to the sounds of the NICU, the babies crying, the soft lullabies playing, the beeping of the monitors. Knowing when his monitors alarm it's 'probably' nothing - and fighting the panic in knowing it could be everything.

I could have never imagined this. Not that anyone sits around thinking about the day they watch helplessly as their child fights for their life. But it's easy to get lost in how surreal it all is. Time doesn't matter. Space doesn't matter. Nothing beyond heart rates and oxygen saturations and results of EKG's and echos and gas draws matters. The darkness of his room removes difference of day and night. The only solid footing is found in the solace of your mind, and let's face it..that's the last place I want to be. 

I just want to hold him. To comfort him. To smell him. To somehow for a moment pretend that all is 'normal' and for my heart rate to just slow down for a minute. I keep telling myself, just breath. But even imagining life at home with him when this is 'all over', brings no comfort - for the rest of his life he will be monitored for the 'what ifs'. 

When I found out I was pregnant after 2 consecutive losses, I gave myself a goal. If I made it to 12 weeks, that's when I would feel 'out of the woods'. But I didn't feel it then. So it was 20 weeks, the anatomy scan - thats when I would relax and feel ok. That obviously only escalated things. I thought maybe when he was born, when I could physically see and touch and hold him, then I would be at ease. But the realization has come, that for as long as this little boy lives - I will never have the comfort of knowing that he is ok.

I am not so naive to think my daughter couldn't be taken from me at any moment. In fact I often worry that it'll happen while I'm giving my time to Kilian. But comparing the two is apples to oranges. She is fine. He is not.

I wonder about who he will be. What he will look like. What color hair and eyes he'll have. And then stop myself, almost in a scolding manner. As if I'm shaming myself for thinking of the future when we're just lucky to have had him here for 2 weeks. I feel like I'm setting myself up for failure if I start to believe he's going to make it, and the emotional battle I rage inside is exhausting and lonely.

And the worst part is, today is a good day.

Today we made progress. Today his numbers are good. Today he impressed another doctor that didn't believe he was going to make it. Today he impressed me.

And the better he gets, the harder I push away the thought of him pulling thru, because each day spent with him is another that will hurt so damn bad if I loose him.

The NICU has lots of sounds, unfortunately none of which are loud enough to drown out the thoughts in my mind. However, in the little moments he opens his eyes and looks right at me, nothing else exists...nothing else matters. We are the only two people in a world that suddenly stands still for a minute. It's in this minute, looking into his eyes, that I find the stubbornness I've given to him to suck it up, raise my head, and refuse to give up. Refuse to be anything less than strong. Relentless in pushing down emotion so I can focus on picking up the pace to keep up with Kilian. That little boy keeps me going, and I will with every ounce of my being return him the favor.

"Though my soul may set in darkness, it will rise in perfect light; I have loved the stars too fondly, to be fearful of the night." -Sarah Williams