The NICU Shadow
By Whitney Swance Starczewski
April 3, 2018
My husband and I are standing next to Noah’s isolette, looking up at his monitor. Despite it being summer, my purple cardigan sweater has taken up residence on the chair in room #5 of the hospital’s NICU. I grab for it as the air conditioning threatens to steal any warmth I had acquired from eating lunch outside. I feel content, energized even.
Then, the numbers on the monitor begin to drop.
The descending digits instruct the alarms to sound. Noah’s nurse is seated, taking notes on the computer in his room. She stands up and comes over to us when it sets in that something’s gone terribly wrong. Her hands reach into the isolette while her eyes look up, drawn instinctively as ours are to the monitor’s display. We all watch as Noah’s heart rate and oxygen saturation levels trip over themselves during their precipitous fall. “Come on, buddy,” she nudges my newborn in encouragement. By now, the alarms are going crazy, screaming, desperately admonishing us to do something, anything!
But I’m deaf to them.
My heart beat is overwhelming any ability to breathe, speak, or move, so I stand there, motionless. My eyes alone have the wherewithal to jet back and forth between Noah and the deranged monitor who hangs there helplessly while we all stand there staring.
Those who have experienced the fear of imminent death often say they saw their life “flash before their eyes.” As a NICU parent, I know this phenomenon can be experienced on behalf of an ailing child. Was my son going to die?
By way of the monitor’s neon lights, I suddenly see him looking at me again. He’s concerned, his wide-eyed gaze asks me what’s going to happen to him. It’s the same look he gave moments after he was born. Then, I feel the warmth of his small body resting on my chest. I hear him sigh as he wrestles to get comfortable during “kangaroo care”. I breathe in the sweet, tranquil baby smell of his strawberry-blonde hair. As my eyes glass over, I think about him dying, right now, in this very moment. And I think about how much he is loved. I’ve never loved someone as much as I have loved Noah. Why is this happening to us??? This can’t be it!
The silencing of the alarms jolts my senses.
It also signals to us that Noah’s heartbeat has returned to normal, and that his oxygen saturation is healthy again. We can all breathe. “He just Brady-ed. Bradycardia. It’s fairly common,” our nurse reassures us. She then proceeds to slip off her gloves as my eyes zoom in. A subtle shaking betrays her recent fear.
Some days, Noah’s NICU experience seems like an unrelenting shadow. It follows closely, coercing me not only to revisit Noah’s “brady” moment, but also the removal of his chest tube.
It’s two days after he was born and one day after the tube was inserted. He had experienced a pneumothorax, the medical term for a collapsed lung, and the tube was inserted emergently.
The room is dark save some somber hallway light and a harsh fluorescent beaming down from above. A team of doctors and nurses, made anonymous by their face masks and uniform blue scrubs, are hunched over the incubator, fixated on what’s inside. My husband, Jan, is there; he’s cradling Noah’s head and feet in a “hand hug”, softly reminding him over and over how strong he is and how much we love him.
I’m there too, but removed, watching from the nurse’s chair in the corner where I’m seated. My legs and feet feel like marble from the water weight I’ve gained, my abdomen aches from the C-section and I feel dirty having not showered in days. Sobs, chest heaving, snot, I attempt to silence myself while I cry.
How did we end up here? I should be with him. I’m his mom and I can’t do anything right now. Stand up, be there with him! Stop thinking about yourself. What the hell did you do to put him in that isolette?
When your baby is in the NICU, your every thought, feeling, emotion hangs precariously on the tenuous state of their health and well-being. Although the days and nights reluctantly trudge forward, making the journey seem endless, time to focus on “you” is largely absent -- your energy is concentrated entirely on your sick or premature infant. The impact of this journey on the parent continues long after the NICU ride is over.
More and more, psychologists are acknowledging the emotional toll a child’s NICU stay can take on parents. In fact, they’ve found that PTSD in NICU parents is not all that uncommon. It makes sense. For some, the experience chases after them, stalking and taunting them relentlessly with debilitating flashbacks long after their child is discharged. The constant “life or death” stress, the alienating hospital environment, a traumatic birth experience - it leaves an imprint. I’m surprised we’re just now connecting the dots.
Nine months later, washing my hair, putting laundry in the dryer, drinking my coffee, I still find myself revisiting Noah’s NICU experience. Noah spent 59 days and nights in the NICU and they were hard. Mostly for him, but for us, too. The NICU shadow doesn’t let me forget.
Oftentimes, though, I’m one of the lucky ones who can fight him off.
My greatest weapons are support, time and gratitude. Even so, Noah’s time in the NICU won’t always yield so much authority over me. I know that from leaning not only on my amazing family and friends, but also on other parents who have gone through what we have. Were it not for our hospital organizing a support group for this purpose, I would never have made such connections. Beyond the outstanding care, I will forever be grateful to them for putting this support network in place.
I also know that time is powerful. It will cause the memories to fade, and it will curtail the frequency of the flashbacks.
When I remember, I also practice mindfulness. Focusing consciously on the present moment, I hone my gratitude and am thankful for having Noah here and healthy with us now. We cuddle a little longer, I kiss him again. We read another story, sing another song. It doesn’t change the past, or how I oftentimes still experience it, but it certainly does help.
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