Step 1: Loss of control. ✔️

The beginning of my adventure with having a preemie is long and emotional and complicated. It’s a tangled mess, think 27 strands of Christmas lights all in a heap, made up of medical jargon and big emotions. The first strand is me delivering my son at 31 weeks gestation through an emergency cesarean due to placental abruption. There are so many stories and snippets I want to share. Eventually, I will get to the very first parts, but I believe this is a story best told with a little perspective from the parts seared into my heart. I hope you’ll join me.

One of the biggest mental hurdles of the NICU is the loss of control. Many of us had little or no control over the birth of our baby’s. Having your bodily autonomy violated for the safety of you and your baby is a tough concept to work through. One that there’s no time to even think about when your whole world is spinning and the sweet baby you dreamed of’s health is the only thing that matters. But don’t you worry, all those feelings of anger and grief will come back to visit you later. Right now you’re in survival mode, no time to tend to that pesky ol’ mental health. Even folks who don’t have “control issues” tend to succumb to the ever changing chaos that has become their life.

Your body is doing it’s own thing trying to heal, sometimes well, sometimes with complications. Neither of which you have a say on.

Your baby is at the mercy of test after test and tubes and IV’s that are necessary but again, mostly out of your hands.

I grasped at control by asking question after question. I wanted everything explained to me. I wanted to know the benefits and risks of EVERY. SINGLE. THING. What’s in that artificial nutrition bag? Specially made food for your baby. Um no, I want to know exactly what it is. What are the ingredients? Can I get a printout, please? And when you get back I’d love to know how this pole of machines he’s hooked up to works. Thanks. Why do you keep referring to the pump for his food? What’s a “pump”? So it’s controlling the pace and amount of food my baby is getting via the NG tube? Ok, cool. How do they decide the pace and amount? What do these monitors do? And why does he need that one? And on and on and on... You get the point.

Side note: I will forever appreciate the kindness of the staff who were so, so patient taking the time to educate me. I was in a foreign land and didn’t speak the language. Having loving and kind interpreters was the sweetest gift in the midst of this mess.

I’d like to tell you there’s some easy, peasy “tips and tricks” for letting go of control and just going along for the ride. But that doesn’t exist. Not even a little bit. What does exist is a Masters level degree of expertise in what I call, “barely holding it together”. Who am I kidding? It’s a Doctorate.

Finding peace in the NICU is no easy feat. There are glimpses of the sun. And those little speckles of light keep that thread you’re hanging onto going strong. For me, holding Elias on my bare chest in his diaper was my ray of light. I was making him strong and healthy with my body and science. That was my “take back the night”. In those moments I knew I was so fortunate that he was well and I was well enough to hold him. So many parents go weeks without holding their babies due to medical needs.

Often, though, my mind would wander to the dark places. What if he *was* that sick? What if something happens like NEC (necrotizing enterocolitis)? What if he needs brain surgery? Or heart surgery? Oh yeah, I don’t have a damn say about that.

Anxiety comes stomping in, shoving the door of uncertainty open. I feel my heart starting to pace... here comes the sweat beads on my forehead and the rapid breathing. I smell Elias’s soft hair and gently squeeze him close to me. I say to myself, like some wanna be therapist with one high needs patient, “Let the panic ride, let the fear and emotions flow through you. You don’t want them getting stuck so just keep shoving them out the other side.” And by other side, I mean down. ALL THE WAY DOWN. That way they can fester and grow until they come spewing out later like hot, gooey lava. You betcha that’ll be a good time. But I don’t have to worry about that now. I just have to *barely* hold it together. And I can do that easy, peasy. Let the shoving commence!

Thanks for coming to my TedTalk on handling control. Future presentations to include grief, breastfeeding a preemie, anger, NICU community, mental health support and so on.

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Go ahead and try not to sing it! Many people in your circle will have a big opinion on whether you stay around the clock or go home. Here me when I say there is no right or wrong answer. Only you can