A Scary Sleepover (Post-traumatic Stress and the NICU)

Well folks, we’ll be packing our overnight bags. Jaxson will be staying overnight at the hospital. Even though I am happy that he will be recovering from the two surgeries in a safe place, I’m having a very intense reaction to this news. I’m anxious (more than usual), I’ve been having nightmares, and I keep reliving the experience of having Jaxson’s hooked up to all those monitors over and over in my head. In one particularly bad dream,  Jaxson falls off the bed. I reach out to catch him and I come up with a handful of monitor wires. They snap off and Jax falls to the floor (which, of course, is more like a mountain cliff.) It’s so real that when I wake with a start, I check the floor first. In my dream, there is no way he could have survived that fall and I’m panicked. There must be something more to this…

So, I searched “Post-traumatic stress and NICU.”

Hand to Hold (a preemie support organization), has an article about parents who experience post-traumatic stress disorder (PTSD) as a result of their premature birth and subsequent NICU stay.  I also found a blog post from another preemie mom that really hit home with me. Wouldn’t you know it. This is a thing. I’m not the only one.

Mayo Clinic defines PTSD as a:

“condition that’s triggered by a terrifying event. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.”

That about sums it up. It’s obvious that Jax’s birth and NICU stay would qualify as a terrifying event. Every single day for the first 2 months, we did not know what was going to happen. We did not know if Jax was going to make it. (I never doubted that he would, I just didn’t know if he would. Does that make any sense?) It was especially difficult when the doctors would say things like “Many 23 weekers don’t leave the NICU.” and “Hold him and touch him as much as possible. He may not make it through the night.”

I remember very clearly one day when my best friend came to visit at the hospital.  I had been at the hospital at that point for 12 hours because Jax was having a very difficult day and was having a hard time keeping his oxygen levels in check. During our visit, Jax had a spell (where his oxygen levels plummeted and his heart rate dropped dangerously low). At this point in our NICU experience, I was relatively used to seeing this happen. I knew what to do and immediately started rubbing his back to remind him to take a breath. I (tried to) kept calm and noted the numbers to tell the nurse who arrived just seconds after the alarms went off. Then I looked at my friend’s face. There was horror there. There was a look in her eyes that told me just how serious our situation really was.

I think that parents of kids that require extended hospital stays (for whatever reason) are some of the strongest people on the planet. We are physically strong: we endure hours of uncomfortable surroundings,  terrible food (or no food at all), and no sleep. We are emotionally strong: we watch our babies get poked, prodded, scanned, and (sometimes) sliced. We keep a constant vigil hoping and wishing that they can hear us through the plastic walls of their incubators. We have to make decisions about whether to continue care or not. We live with stress and day after day of bad news. We have to make sure that we keep everyone updated: we tell our story over and over again.

I’m not sure if I’m dealing with full-blown PTSD, but I do know that tomorrow will be a test for me. Will I get to the hospital and “buck up?” Or will I get there and panic? I suspect that I will be fine (I usually am.) And Steve will be there, too, which will definitely help calm me.

But even if I am just fine tomorrow, now that we have had a chance to process some of the things we went through, it’s time for me to face the fact that I am suffering from some post-traumatic stress from this experience. What do I do about it?

Well, as you know, I write. And I talk to other parents who have been in similar situations, and I talk with parents who are just beginning their journey because I have something to give to them: hope. And (some) knowledge, I think. I’ve had many parents reach out to me recently asking for advice on how to get through the NICU experience. It makes me feel better to give back. It helps me heal.  So, I started a Facebook group for other Minnesota preemie parents where we can connect and share and heal with other parents who just “get it.” If you are a preemie parent, either just starting out on the journey or a “seasoned” parent, and you want to join us, we’d love to have you. You can find out more and request membership here: www.facebook.com/groups/MNpreemieParents.

Healing won’t happen overnight. As a matter of fact, I’m pretty certain that our experience will always be with me. It’s changed me. The things that I thought were important before aren’t as important. I take less for granted. I’m much more cautious with germs. I value life more than I did: the physiology of our bodies, the actual miracle of breath. It’s this openness and awareness that will be the key to healing for me.

I’m sure Jax will do fine tomorrow. The surgeons are the very best at what they do; they’ve done these surgeries thousands of times. He will be at Children’s Hospital; they take care of children all day long. He will be in good hands. We will keep you all updated via our Facebook page and will try to write an update with more details after he’s awake and ok. As always, we would appreciate your positive thoughts and prayers that the surgeons have a steady hand, that Jax handles the anesthesia well, that Steve and I can keep each other calm, and that we’re all home safe and sound by noon on Wednesday!