Earthy and Expecting: Micro-preemie survival mode, a list of dos and don’ts

On October 29, I gave birth to my son nearly three months early. That day, I learned a little something about survival mode.

Survival mode is the phase of existence you enter when something so traumatic happens that your body and mind go on auto-pilot. You draw strength from reserves you didn’t know you had, from the people you love who plant their feet so you can lean on them, and from the professionals who take life out of your very body and promise to nurture it the way you would if you were able.

When your child needs help breathing on a day-to-day basis, you can’t fall apart. Survival mode is your new reality.

By way of an update, Jax is doing amazingly well. Our favorite nurse affectionately says he’s “kicking baby butt.” Most preemies, we were shocked to learn, lose weight in the first week or two; Jax did lose a few ounces, but is already back up to his birth weight and enjoying more frequent feedings, so his weight should be all uphill from here.

That helps his daddy and I breathe a little easier, but breath is the biggest issue for micro-preemies, almost all of whom will suffer from episodes of apnea and bradycardia. Essentially, their little lungs haven’t fully developed, and breathing is so hard at times that they “forget” to do it. Monitors pick up these episodes via an alarm, and nurses — or mom or dad — flick baby’s feet or rub his back to alert him to breathe.

Some preemies have dozens of bradys a day. Jax isn’t having nearly that many, due to his CPAP treatment (continuous positive airway pressure, or assisted breathing) and the lung-strengthening steroid shots I received while on bed rest before I delivered him.

Again, we breathe easier when that alarm isn’t sounding.

But when it does, how do parents cope? For that matter, how do we cope at all with the extraordinary circumstances of our child’s continued survival?

So far, here’s what I can tell you:

  • Stop worrying about what caused preterm labor. This is misdirected energy. You will drive yourself mad trying to figure out the cause of something that can no longer be prevented. Doctors assured me that the cause of my preterm labor can’t be specified any more than an “inexplicable placental abruption.” Unlike in the traditional stages of grief, in the case of preemies, acceptance is the first step, not the last.
  • Ask questions. Jon and I have a reputation at York’s NICU for asking about anything and everything. We realized this when one doctor, in anticipation of our ultra-specific questions, created a presentation on his smart phone to explain the four stages of potential preemie brain hemorrhages to us. The nurses give us detailed updates on his vitals, weight, feedings, even the tiniest tweaks to his treatments, and they involve us in the routine things like diaper-changing, bathing and temperature-taking. The more you normalize your time in the NICU, the easier it is, relatively speaking.
  • Embrace Kangaroo care as early as possible. This is your first real contact with your baby, and it’s proven to help reduce apnea and bradys, increase oxygen and heart rates, promote lactation in moms, encourage bonding and even reduce colic. Plus, when that warm little body stops wiggling and gets comfy on your chest, sighs and drifts off to sleep … here, my writing capabilities fail me. The feeling is indescribable. K-care rocks.
  • Take any and all offers of help. Let relatives and friends clean your house, help with groceries, call other relatives and friends with updates and buy you lunch. Ask to speak to a NICU social worker, and to be connected with any support groups. Your baby needs you to be strong; don’t wait to have a meltdown before asking for or accepting help.
  • Own all feelings except guilt. Guilt is destructive. A couple days ago, I looked down at my now-flat belly and thought, wow, this is great, I don’t even look like I was pregnant! Then, I cried for 20 minutes. I should be huge and happy about it, I thought guiltily, until I realized that kind of thinking falls under the “stop worrying about something you can no longer prevent” tip above.  I shouldn’t hold on to guilty feelings about no longer being pregnant, or the psychological effect of now looking like I never was. And Jon shouldn’t feel guilty for taking time to play some guitar to get his mind off things. And neither of us should feel guilty for going back to work. Being a NICU parent is enough of a proverbial emotional roller-coaster without letting guilt in. Feel what you feel, and don’t apologize, even to yourself.

I’m not saying any of those things are easy. Nothing about this situation is easy for anyone.

But we do what we have to do to survive.

You may also like...

1 Response

  1. November 15, 2012

    […] wrong is right Posted on November 15, 2012 by Stacia M. Fleegal TweetLast week, I wrote about survival mode, the auto-pilot that kicks on when life serves up […]

Leave a Reply