I don’t want to be a total downer in this post, but with all the new territory to learn, all the ups and downs and changes we’re experiencing, and despite all my attempts to demystify and normalize it for you, there is one crappy fact about being a NICU parent that can’t be ignored any longer:
Every day, Jon and I have to leave the hospital and go home without our son.
Every day, we touch, smell and talk to Jax. We change his diapers and take his temperature. We help weigh and bathe him, and I at least simulate feeding him on a regular schedule. We take pictures of him to capture his growth.
And when he’s having a good day breathing-wise, we get to hold him on our chests and smell his head, which I thought would smell like a hospital but doesn’t.
Our son has that great baby smell just like any other newborn — and can stink up a room like any other baby, too — but our son can’t leave the NICU.
We bond with him as best we can, but sometimes it can feel like he isn’t ours yet. Some days, I love that the nurses coo at him like he’s their own because we’re grateful they care about and look after him so well; others, I struggle to believe he can tell my voice from theirs.
There are things we do to distract ourselves from Jax’s presence-as-absence in our lives, to create some semblance of a parenting routine.
Fake it til you make it, right?
Routines aren’t for everyone, but I happen to be a person who thrives on a routine of my own making. What helps me get through these days is to break up my workday with a long visit in the middle. While this requires coming into work early and therefore getting up even earlier, I find that it’s hard to wait until the end of my workday to get to the hospital, both because I’m tired by then and because, well, would you want to wake up at 6:30 a.m. but have to wait 12 hours to see your child?
I also call the NICU for updates. A lot. I’ve made a habit of calling before we go to sleep. If I can’t kiss my baby every night, I can at least make the last words Jon and I share for the day be about Jax and his latest milestone.
Additionally, we keep track of those milestones on a website called CaringBridge, a nonprofit organization with protected, ad-free website templates specifically designed for people experiencing health problems. It’s like creating a blog through WordPress or Tumblr — you can post as often as you want, with images, and there’s a “guest book” for people to sign and leave messages. We take a lot of pictures and video, so when we aren’t gazing at them, we’re posting them online. Updating Jax’s CaringBridge site is a near-daily comfort for us, and also allows us to put all his information in one place for family and friends to follow his progress, too.
And they do. To date, Jax’s site has over 1,600 hits and 43 guestbook messages. Reading these notes of support is another way to cope in his absence, and they also provide us with a permanent online record of his time in the NICU.
Another thing we’re starting to do is work on his nursery, slowly sifting through the items we received at my shower or as hand-me-downs from thoughtful friends and co-workers and compiling a list of things we still need.
Nesting is hard to do when you live primarily at work, at the NICU, or in the car on the way to one or the other. Now that things have calmed down a little, though, we need to think about where our boy is going to sleep and play and be changed when we bring him home.
And he will be coming home. Just not yet.