The Baby Down the Hall

My mind’s ramblings are generally inspired by my children, and this one is no exception.  It is rooted in Lucibelle’s story, but it is really a reflection and confession of the heart for me, as a mom.  It is the story of my Hallelujah…the cold and broken kind. 

A friend today, shared an article on Facebook which stated, “Given the nature of NICU…the feelings of emptiness and grief, the uncertainty and ups and downs, the lines, wires, monitors and alarms, not to mention the security buzzers at the entrance of the unit or the constant rigorous hand-washing, it came as no surprise to me that parents who have experienced premature birth are at greater risk of postnatal depression, anxiety and post-traumatic stress disorder (PTSD)” (Oglivy, 2017).  The article goes on to explain that 40% of NICU mothers experience postpartum depression.  Now, I have not gone on a fact-check for these percentages.  To those who have never experienced a NICU or a PICU, this may sound like lies, damned lies, and statistics.  But to me, it sure seems logical. 

Coincidentally, Facebook also reminded me that three years ago, today, we got to bring Lucibelle home from a three week hospital stay that, for us, was life-altering.  At 7 weeks old (adjusted age: 1 week old) she had already endured all of the pokes and prods that comes with three weeks in the hospital, along with an EEG, an MRI, 2 nasal feeding tubes, and two lifesaving, surgeries. 

I never dreamed we would have a feeding pump, a c-pap machine, a nebulizer, a pulse oximeter, and various other medical equipment in our home.  I never dreamed that even three years later we would be planning her eighth surgery.  I never dreamed (or nightmare’d, if you will) the amount of medical bills a little person could gather.  I never dreamed of the amount of prayers and love we would receive from friends, family, and people we have never even met who live in places we have never even been. 

Even so…for so many other moms and dads out there, Lucibelle’s journey, by comparison, is such small potatoes.  There are moms and dads out there whose babies have fought far greater battles.  There are moms and dads out there with medical equipment I probably could not even power on.  There are moms and dads out there with medical bills so astronomical, I could not even begin to imagine.  There are moms and dads who pray for, support, and encourage other families of medically fragile children, while simultaneously cheering on their own children as they fight disease and disability. 

Then, of course, there is the worst imaginable scenario, there are moms and dads out there who suffer the loss of a child and whose babies will never come home, which leads me to another reminder Facebook sent me this week. 

On July 8, 2015, just before 3 a.m., I rocked Lucibelle and stared at monitors with which I had become all too familiar.  The ICU was cold, lonely, and scary.  Learning to feed my baby through the new surgically placed port in her belly, even scarier, and the IV ports and monitor leads did not make it any easier.  Not only was it an easy place to drown in sorrow for my baby, it was also an easy place to settle into my own depression.  The silence had been so loud, but the sound that broke the silence was staggering…a sound my heart will never forget. 

It was raw.  It was animalistic.  It was much too real for my sleepless stupor.  There was no mistaking the mother’s wail down the hall, “What do you mean, she’s dying?  Please, God, no!  Don’t take my baby!”

The feelings of dread, helplessness, hopelessness, despair, and darkness once looming on the horizon, engulfed me in all directions. 

I held my baby even closer.  Lucibelle would be okay.  She would come home with us.  I sobbed as I sang Leonard Cohen’s Hallelujah and watched her sleep as the storm in my heart was punctuated with electric surges of guilt. 

The mom and dad down the hall would never take their baby home, and in that moment, these strangers became some of the most poignant characters in my life’s narrative, though they will never know it.  I never saw the baby down the hall but I saw her parents pacing frantically and walking family, who had gathered in the waiting room, to say their goodbyes.  Lucibelle’s room faced a nurses station into which I would watch the nurses duck, regain their composure, console one another, and then go right back to their top priority…a priority that the term “gut wrenching” is far too benign to describe…the priority to calmly, peacefully, and compassionately guide this baby and her family in her last moments. 

Suddenly, Lucibelle’s feeding port seemed so minuscule in the grand scheme of things.  Also in that instant, however, Lucibelle felt so much more fragile in my arms.  She did not feel like a baby that would bounce.  She felt like a baby that would break.  Like if I was not ever so careful, ever so vigilant, ever so protective…like if I ever got comfortable…the next strangers down the hall would be us.  The anxiety was crippling.

Not a day goes by that I do not think of the baby angel down the hall.  I imagine she was like Lucibelle, with a fiery passion for adventure, dance, and anything that sparkles.  I wonder if she is maybe one of Lucibelle’s guardian angels, and I pray for the mom and dad who, three years ago today, were mourning the loss of their baby girl. 

Unlike other stories, where the emotional response dissipates with time, the story of this moment in our first ICU stay brings back that flood of emotions.  It is no mystery to me how mothers of children who spent time in the ICU could go on to experience symptoms of PTSD, anxiety, and depression. Even while writing this blog, fighting back the tears is absolutely impossible…as though it is all happening all over again.  The pain in that mother’s voice.  The pain on those nurse’s faces.  The pain of loving someone so much you actually ache inside.   

One of my favorite verses from Leonard Cohen’s song says, “Love is not a victory march; It’s a cold, and it’s a broken hallelujah.”  

I hum the tune.  I dry my eyes.  I take a breath.  I rejoin my now.  I try to absorb every moment and be in attendance for the beauty of today.  Sometimes with the deepest pain…in all that is cold and broken, God also grants the deepest love.  For that, we praise Him.  Hallelujah. 

Three years ago, today, our baby came home, and today, she is an energetic ball of sass and sugar. 

Sometimes, before it instantly transitions into the past, the present makes its mark…a reminder, of sorts...like the scars that adorn Lucibelle’s abdomen.  

Then, they were wounds, painful surgical incisions sewn and covered with gauze and medical tape.  Now, she doesn’t even know the scars are there, though I notice them every day.  She runs around with that little milk-belly hanging out without a care in the world.  And I chase after, hoping to catch her if she falls.  Someday, though, she will look down at her scars, and she will ask where they came from. 

We will tell her about her surgeries, but more importantly, we will tell her that these are the reminders of the many, many beautiful and loving people who loved her and prayed for her before she knew them. 

And perhaps, when she’s old enough to know, I’ll tell her how her beautiful marks are my prayerful reminders of the worst kind of pain, the best kind of love, and the baby angel down the hall.