By Gabrielle. Illustration by the super talented Erin Jang.
If you’ve ever been pregnant, you’ve likely agonized over taking any sort of medication that could potentially carry risks. “Will it hurt the baby?” is a phrase probably uttered many, many times over that nine-month period, right? And usually, if our doctor assures us it’s all good, then it is.
But what if our doctor is wrong? What if the worst of nightmares comes true and suddenly the medication we took that was most assuredly fine was most definitely not fine? What if it does hurt the baby?
This is a story about that nightmare come true. Almost. Please join me in welcoming Sara Gillis. I hope the lessons she learned will help you get through your own moment when you feel like you’ve just let down the world around you. We’ve all had one or two of those, haven’t we?
Three white, sticky circles were attached to his chest. Wires spilled across his breast bone, red and white in color. The beeping of the monitor tracked his heart rate – beep, beep, beep. His feet, wrapped in bandages as a result of many hours of pokes and tests, were oozing red and aching, making his sweet face grimace with each cry.
He lay in a bed with see-through sides, clad only in a diaper brandishing the letter “N” for newborn. The colorful mixture of cotton and sunshine yellow that swaddled his tiny middle was the size of my palm. He was sleeping, fitfully, clearly in a state of distress, which was undoubtedly caused by anxiety regarding when his next round of testing, his next unsuccessful round of nursing, his next interruption would disturb his slumber.
As the doctor came in to look at him, I rose from the chair beside him, the nursing slits in my pink floral hospital gown open, barely concealing my still-swollen belly. My husband Jordan approached from a pull-out sofa across the room and took his place by my side.
“I see that you are on medication for anxiety and depression,” the doctor said to me.
I nodded, my heart quickening as I saw the doctor’s eyes glance quickly at the chart in her manicured hands. The doctor let out an audible sigh – obviously, the morning had already been a long one – and met the eyes of the nurse, who was positioned behind me.
“As you know, your baby is here in the Neonatal Intensive Care Unit (NICU) because he is struggling to maintain his blood sugar,” the doctor said. “His inability to regulate his glucose levels, as well as his overall sleepy state, tells me that his struggles are primarily due to the presence of your anxiety medication in his system.”
I looked up at the whitish-gray ceiling tiles of the room in the NICU as teardrops amassed, threatening to fall from my eyelashes to my cheeks to my chest, not yet swollen with milk. I blinked rapidly, willing the tears to subside; I turned away and brushed at my cheeks, the heparin lock still in place in my hand.
As the doctor continued to explain the NICU procedures and the treatment plan for the baby, questions swirled about in my mind as I attempted to make sense of the doctor’s statement.
Couldn’t his inability to control his blood sugar levels have something to do with his premature arrival at three-and-a-half weeks early? What about the fact that he was only five-and-a-half pounds at birth? What about the medication (terbutaline) that I was given (and that failed) to stop my labor – or the medications (a combination of morphine and vistaril) that I was given (and that failed) to allow me a time of therapeutic sleep as my body labored – could these have made him lethargic and thus complicated his ability to regulate his blood sugar levels? My milk hasn’t come in yet – could that be contributing to his low blood sugar? If the anxiety medication has such negative effects, why wouldn’t our regular physician make us aware of the risks to our child? Why did we not learn of this possible complication when I first went on the anxiety medication, before we conceived our first child who, by the way, was born healthy?
My eyes betrayed me. Through my tear-clouded vision, I stared at my little boy in the clear box. The irony struck my very bones: my brand new baby, so fragile, was placed in a box of glass.
As the doctor reached for the hand sanitizer and exited our room, my tears began falling faster, this time in tandem down each cheek. I looked into the nurse’s eyes and mustered just one statement, the one that wouldn’t be suppressed in the midst of all of the questions chasing each other around inside my heart.
“I never would have taken the medication had I known…had I known that it would hurt him in any way.” As I reached for my son’s tiny hand, my shaky voice gave way to a sputtering of sobs, a cacophony of painful waves that violently shook my whole being.
The next thing that I heard was the nurse – a new nurse, for the time had come and gone for shifts to switch – recommending a formula feeding in hopes of increasing the baby’s blood sugar levels. Guilt-ridden and tear-filled, I understood that I had only mere drops of colostrum to offer my child, as my breast milk had not yet come in. I nodded, my face relaying the hesitancy that I felt inside. How could I be trusted to make any decisions on my child’s behalf? After all, it was my choice to visit my doctor, to ask for help, to take a medication that the doctor said had caused my child’s body undue stress and had rendered my own heart shamed beyond recognition.
The nurse’s voice took on a caring, sympathetic tone. “We need to do whatever we can to get your sweet baby out of the NICU and back into your arms,” she said. “This will help us to accomplish that.” And so it was agreed: the baby would have one helping of nutrient-rich formula.
As I walked along the cavernous, winding hallways from the NICU back to the postpartum ward, back to my recovery room, I willed for my breast milk to come in, because the nurses had promised me that the arrival of my milk would jumpstart the fight against my boy’s low blood sugar. So, I waited and waited. Amidst update after painful update from the nurse that “There’s been no change in the baby’s levels, but keep trying to nurse as much as he’ll take,” I sent my husband to spend time with our newborn son, for his heart wasn’t clouded by the mama guilt that I was so fiercely, so relentlessly subjecting myself to. It was there, in the NICU, that my child received his first bath, a moment that I observed in pictures, not in the flesh. My heart would not allow me to experience that moment in person. I laid in my hospital bed, my arms empty. I stared at the empty space beside me, where the bassinet should be, where I should hear gurgles and breaths and whimpers from my sweet baby boy, brand new and swaddled and smelling of baby lotion and Heaven. I let my tears fall, again and again.
It came – it finally came! – and when it did, it came in buckets and barrels. I pumped it devotedly, hour by hour, bottle after bottle, marked it with my name, the time, the date, and the number of ounces. I gave it to my nurse to store in the fridge marked “breast milk – do not drink.” I astounded each nurse that I encountered in the next 24-hours with my robust supply, with my frequent buzzes of the “call” button with more breast milk to store.
For every ounce of milk that I pumped, I tried to forgive myself that much more. My family practice doctor had visited earlier that morning, and she assured me that she had never, in her years of medical practice, encountered any sort of complication with the anxiety medication that she had prescribed. “I have numerous expectant mothers on the very same medication that you are taking,” the family practice doctor said, in an attempt to reassure me of the safety of modern medication. Yet, this statement had the opposite effect, for all that I could think about were the other mothers, the other babies that might be, could be in my situation months from now, simply because they never knew of the complications, either. They just didn’t know. Why didn’t they know?
Every two hours, on the hour, I pushed my wheelchair through the halls of the postpartum ward, down the elevator, and through the security entrance to the NICU. Every two hours, on the hour, I wheeled into my baby son’s room, grasped his warm, diapered body tightly – I learned quickly to take care to navigate the positioning of the wires taped to his torso, so as to prevent needless alarms from sounding – and fed him my breast milk from a tiny bottle with a tiny nipple. Every two hours, on the hour, I held him in my arms as I sat in my wheelchair, and I burped him, rocked him and sang to him, songs about sunshine and twinkling stars and grace that amazes. And then, after it was all over, I would wind my wheelchair back through the depths and alleys of the hospital to sneak an hour of rest before doing it all again. I’d set an alarm, exhausted from the trek down and back, yet anxious and terrified for the alarm to alert me that it was time to do it all again.
My alarm sang out for the umpteenth time that day, this time right before supper. I again made my journey down through the NICU doors, pausing, as I always did, to scrub my hands from fingernails to elbows and back again, to ensure a clean shield upon which to cradle my brand new baby. Yet as I reached for my boy, awake and stirring and ready to eat, a nurse entered and told me that my sweet baby was ready to leave the NICU and return upstairs.
To our room.
His blood sugar had stabilized. My breast milk and every-two-hours feedings had worked. He could finally be in my arms, all the time.
Joy spilled over and over again, not unlike the tears of relief that fell from my cheeks, as my baby was finally able to room-in with me after his short stint in the NICU. In celebration of the baby’s rebounding health, we decided that it was time for our older son to meet our newest bundle. My husband led our oldest, Lionel, into the hospital room, and the two-and-a-half-year-old boy, clad in a shirt brandishing his favorite Sesame Street characters, smiled widely as his eyes met mine. Our older son was so sweet, so careful, but was so scared to touch the baby in his Mama’s arms. The baby’s name, Quincy, so carefully chosen and long kept secret from all, even the little boy, escaped his toddler lips over and over as he tried it out for a first, a second, a millionth time. Lionel saved his kisses and hugs, not quite sure about sharing them with his brother just yet; he showed remarkable control over his chubby toddler limbs in refusing to even touch the baby boy’s hands with his own. It was the sweetest of meetings.
Yet, despite my best efforts, my precious baby returned to his sluggish state. As the sun gleaned and glimmered off of the freshly fallen snow the following morning, his blood sugar levels took another dangerous dip, and when the nurses entered our hospital room, their faces grim, I knew.
As the words left the head nurse’s mouth – “We think it’s best that we take him back to the NICU to be further monitored, so that his blood sugar doesn’t continue to fall” – tears of frustration escaped my tired eyes, reddened from the emotions of the passing hours and days since Quincy’s premature arrival. I pleaded with the nurse not to take him back, to find another way to monitor his progress that didn’t require hospital floors and secure entrances and “wash your hands up to your elbows, please” of separation.
After consulting with the doctors in the NICU, including the doctor whom had informed me of my culpability in causing my child’s distress, the head nurse relented and permitted our boy to be monitored in the nursery on the postpartum floor. As the nurse wheeled my baby boy away, my vision became clouded once more, and I pulled my knees to my chest and sobbed, not caring anymore about the pain of my incision from the cesarean, but only about the hurt in my heart.
By some miracle, Quincy’s blood sugar levels picked up after one bottle feeding in the postpartum nursery. When the head nurse entered the hospital room hours later, she was not alone – the baby was wheeled in with her. After much deliberation with our family practice doctor, it was determined that if Quincy was able to stabilize his blood sugar above a certain level for three rounds of testing in a row, he would be permitted to room-in with me and avoid a return to the NICU. Furthermore, if Quincy’s glucose levels remained above the preferred threshold for these three rounds of testing, he would be discharged with me the following day.
This news so quickly turned the day around for me, and for the baby, too; my priority became to ensure that Quincy’s tummy was always full. I continued to pump in order to track precisely how many ounces the baby consumed.
As each feeding commenced, I spoke silent prayers to God, begging for my child to rebound from this, his first struggle since arriving in the world outside the confines of my belly. With each ounce that Quincy drank, my spirits tentatively lifted, if only for a moment, so as not to allow too much hope to arise in my heart. I watched my baby boy’s bassinet wheel out and in, out and in, out and in of the room that day, my breath held hostage in my chest, as I awaited the results of each round of glucose testing.
With one round of testing complete, Quincy’s levels had stabilized. Two more heel stick blood draws remained, and with each bottle-feeding and each subsequent test came more admissions of cautionary hope on my part.
The second blood draw was encouraging as well: Quincy’s blood sugar levels again reached the safe zone. Only one more round of testing stood in the way of our ability to bring our child home with us the following day.
My favorite nurse – the one who had been by my side when Quincy was first transported to the NICU, the one who had reassured me when my mama guilt reared and pierced again and again – wheeled the baby’s bassinet into my hospital room once more. As we awaited the results of the baby’s final round of testing, my hospital room had filled with family members, many of whom began pacing the room in the worrisome in-between time when the glucose testing was being conducted in the nursery just down the hall.
The nurse’s face was emotionless in its refusal to betray even the slightest hint of the test results. As her eyes met mine, she glimpsed yet again the utter fearfulness that so blanketed me, and she finally spoke.
The room erupted in cheers. As I reached for Quincy and cuddled him close to my chest, I whispered prayers of gratitude for all that we had endured.
Eight weeks later, a growing Quincy and I sat atop the examination table in the clinic of our family practice physician. It had been two months since the baby’s unexpected debut, and the time had also come for the family’s doctor to discuss with me – after much time spent swimming in medical research, and after repeated consultations with the hospital’s NICU staff, at my behest – precisely what had so complicated Quincy’s ability to maintain his glucose levels.
As the doctor prepared to speak, her hands reached out and touched my own in an act of comfort. My eyes, pained with emotion, clung in that moment to the embrace of the doctor in whom I had placed so much trust in caring not only for me, but for my children as well. Many nights had passed since our boy’s early medical struggles, but I spent most of them in fitful sleep, my heart awash in guilt and regret for my role in causing Quincy so much strife in his first days on the outside.
The doctor inhaled deeply, and her words fell on my open, bruised heart.
“The doctor who consulted on your child’s case in the NICU has expressed that her observation regarding your use of anxiety medication may have been exaggerated, or even unfounded,” she said. “In short, after examining the baby’s chart more thoroughly since his stay in the NICU and his eventual discharge from the unit, the doctor has determined that the complications associated with the child’s blood sugar levels largely occurred because of his premature arrival and corresponding low birth weight, not as a result of the low-dose medication that you were taking.”
The family practice physician then turned to the computer in the exam room and deleted the following statement from the child’s medical chart: “Fetal Complications Due to Maternal Medication Use.”
As the doctor exited the room, she smiled at me. And amidst my shaking hands and efforts to will the tears away, I clutched my blossoming child, and I smiled back.
This experience taught our family so much. If we could offer any advice to mothers- or fathers-to-be – or anyone in need of medical care – we remind all to be vigilant, to ask questions, and to ask them again. Talk to your doctor and EVERY doctor you see. Do everything that is necessary to take care of yourself and your child.
And, arguably the most important takeaway from this time, we learned to FORGIVE. Forgive what you idealize yet cannot realize, whether it’s the way in which you bring your child into the world or the choices that you make prior to that fateful day. Forgive the shortcomings of those around you, from the nurse who chides you for co-sleeping or not breastfeeding or fill-in-the-blank-here, to the doctor who misdiagnoses or misreads your baby’s symptoms and unknowingly causes pain and guilt that is unbearable at times. And lastly, forgive YOURSELF, for it is the only way to recover a peaceful existence.
Finally, what we give thanks to God for each day is that our thirty-six hour stay in the NICU with our son places us among the lucky few that are able to leave such a high-risk unit in such a short amount of time. Thus, to all of the families who endure long stays in the NICU (particularly those who are unsure as to whether their children will ever make it home), I pray for God’s strength and peace to envelop you and yours.
This: “Forgive what you idealize yet cannot realize, whether it’s the way in which you bring your child into the world or the choices that you make prior to that fateful day. Forgive the shortcomings of those around you, from the nurse who chides you for co-sleeping or not breastfeeding or fill-in-the-blank-here, to the doctor who misdiagnoses or misreads your baby’s symptoms and unknowingly causes pain and guilt that is unbearable at times. And lastly, forgive YOURSELF, for it is the only way to recover a peaceful existence.”
May we all extend that gift to those around us and ourselves. Can you imagine what a lovely existence that would be? Thank you so much, Sara, for sharing your painful story with us. I’m thrilled it ended happily! Welcome, Quincy!
As for medication, have any of you experienced such a conflict in information while pregnant or otherwise? Please share your knowledge, will you? It always, always helps someone else out there!