NICU vs CICU

I was told about sleepless nights. I was told about pure exhaustion. I was told about post partum depression, blow out diapers and the non existence of time.

But what I wasn't told, is that the newborn stage is the easiest..and the best.

When I think about the NICU versus the CICU, the analogy of the NICU being a newborn comes to mind. At first, it was scary. I had no idea what to do, where to go, or how to do anything. But slowly, you get the hang of it and before you know it, you're a pro. It's a warm, safe haven that, as best it can, takes the place of home. Overtime you form a family with everyone involved in your baby's care, picking favorites...and not so favorites.

You find yourself in rhythm, with routines and accomplishments. It's so scary at times, but you learn when to panic, and when to not. When to worry, and when to let things slide.

The CICU is just plain scary. It's a big kid with big problems and you find yourself missing the newborn stage.

Granted, this is just our experience. I know someone else would have a different story and argue in opposition. But for me, I really miss the NICU.

CICU leaves me little time to sit with Kilian. There's always something going on. On the top of the hour, every hour, checks are made. The ECMO machine is studied, monitoring bubbles and blood clots and which side those are on (coming out - ok, going in - bad). Medicines and drugs are being replaced when empty, which is constant. New IV lines are placed. Kilian was down to just two IVs of medicine prior to his surgery..now, I stopped counting at ten. Adjustments are made in medicine dosage, ventilator settings, let's try this and let's try that.

It was a similar experience in the NICU but on a smaller, more emotionally manageable scale. I could sit with Kilian for hours without having to move out of the way or be disrupted by someone who wants to talk about something I don't want to talk about. In the CICU, I'm lucky to get half an hour with him.

In the NICU, I had alone time with him, privacy, where I could find myself in lala land pretending we were at home and everything was ok. In the CICU, there are at least 2 nurses in his room at all times. Bright sterile lights in a room set up to more or less be an OR, versus a quite, cozy, temporary home with the sound of lullabies and visions of what life looks like once you are walking out of those doors with your baby.

In the NICU we saw progress, and there were talks of his homecoming. In the CICU, it seems every day the hope dwindles - and his homecoming looks a whole lot different. The NICU brought him closer. The CICU is taking him away. 

When I sat with him in the NICU, I envisioned him at home. I saw Amelia playing with him, I saw him sitting in a swing outside sleeping the afternoon away. I saw him in all the jammies we have, waking up to him laying in his crib beside our bed. I saw our future with him.

When I sit with him in CICU, I try to wrap my head around not coming home with him. The house won't have all things baby littering the floor. We won't be introducing him to family and friends. The bedroom upstairs will be an empty room, instead of the nursery I was going to spend hours rocking him to sleep in. I find myself begging the universe to please, please let him be mine.

I think about his name. Kilian Race. I could say it over and over until my voice is hoarse. I love the sound of it. I love that Amelia calls him Race. I love how fitting the name is to him. And I realize that soon, we'll be saying his name much less. I'll never hollar 'Kilian Race!' when he's being naughty. I'll never say, this is Amelia and Kilian, my children. Pretty soon, the name Kilian will represent a memory and a could have been. Should have been.

I talked to Amelia today. I told her that Kilian is really having a hard time, asked if she remembered our previous talks about him possibly not making it - she said she knows. I asked if she was sad, and she told me she was but still hoping he'd make it. I had to tell her that's most likely not whats going to happen. I asked if she was ok, and she said she was. Then she told me to have another baby, and asked where her pink bunny was. It gives me a little bit of relief in knowing when that time comes, telling her is going to be harder on me than it is on her.

And it makes me realize that most likely and soon, both of my kids will no longer be hurting, they will no longer be in pain. Life will go 'back to normal' for Amelia, Kilian will be at rest, and Kevin and I will find a way to manage.

But as many times as I tell myself 'it'll be ok', I know it never really will be.

I want to go back to that Wednesday in the NICU. That Wednesday that was the best day. The day I really thought he wasn't being taken from me. I want to hold him again, and live in that moment forever. I can feel him..in my arms, against my chest, his head resting in the crook of my arm. I can never stop feeling him. My body begs for him. Its this overwhelming feeling of arms outstretched grasping for something they can never quite reach. It's agony.

So instead I wrap my arms around Amelia, and repeat over and over to myself how lucky I am to have her. It does absolutely nothing to curb my longing for Kilian, but it at least offers a distraction.

I miss the NICU. I miss the hope. I miss the pajamas, the possibilities, and his beautiful eyes looking out at all the wonder around him. I haven't seen those eyes in almost two weeks. I already miss my Kilian.