Part 2: Life in the NICU
I hold my baby girl in my arms as the life drains out of her. Her body slouches, her lips are pursed and purple. Alarms begin to sound, first slowly, and then more vigorously with an urgent beeping that resonates across the room and into the hall. I take deep breaths willing her tiny heart to match mine, for her lungs to take breath back into them. I count to 20.
20 agonizing seconds I must wait, my baby girl limp in my arms. 20 seconds I do nothing but sit, frozen, praying to hear a little gasp of air sucked back into her chest. I stare down at the tiny child in my arms.
She is experiencing a bradycardia, a slowed heartbeat, a symptom of her underdeveloped nervous system. It’s something that happens daily, sometimes multiple times a day. It’s something I must sit and endure, because even though I want to help, even though every ounce of my being wants to scream for help to stimulate her tiny body and bring her back to life, the doctors need to monitor these episodes. They need to know which ones she can bring herself back from and which ones she cannot. And so we wait, 20 gut wrenching seconds, the amount of time she can go without consequence, without outside help to bring her back.
I continue counting, each, long, second. Till finally, a little gasp of air! Her rosy cheeks return, and my beautiful baby girl comes back to life in my arms.
This is the story of every day life in the NICU (Neonatal Intensive Care Unit). It is a terrifying experience into the unknown, a tiring, heartbreaking, humbling experience that I wish no parent would ever have to experince. It’s having to say goodbye over and over again and crying, heavy, ugly tears in front of complete strangers day in and day out. It’s dealing with this and still finding the strength to go back because, really, there is no where else you would rather be then with your baby in your arms.
An Introduction to the NICU
Penelope was admitted into the hospital NICU just minutes after delivery. I remember watching quietly from my bed as she was rolled away in her clear plastic isolette, a team of nurses, doctors and my husband in tow. She was taken down the hall to a private room where she was fitted with an IV, tubes, wires and a slew of other machines to monitor and regulate everything she needed to survive. Born just one week into my third trimester of pregnancy, she was considered a mico-preemie, and she needed constant and close attention.
When I was finally able to go see her she was resting peacefully under a blue UV light, her eyes softly covered with a piece of felt fabric and her nose and mouth hidden behind a plastic mask. The rhythmic sound of bubbles from her breathing tube resonated across the room. I peered in at her through the thick plastic walls of the isolette.
“Would you like to hold her?” A nurse asked.
I nodded, and the nurse began the instructions of how to hold the tiny child I saw resting before me. She explained which cords to be careful of, which tube, if pulled, would cause her to bleed to death in a matter of minutes, and then she called for another nurse to help transfer Penelope into my arms.
My heart raced as I sat down in the leather armchair in the corner of the room, “the mothers chair”, and I watched as the two nurses carefully unlatch the clear plastic walls of the ioslette and lift baby and cords out for the first time. Delicately, they placed her between my breasts and covered us both with a warm cotton blanket.
I held my daughter for the first time and as I did a warmth swirled inside me. The steel walls I built to guard my heart through the birthing process began to melt away. My heart opened, I was in love. It penetrated deep within me, soaking through every inch of my body until there was nothing left I wouldn’t give to her. I looked at her tiny face behind the green ventilator mask. I wanted, I needed, to be with her.
And so I was. Every 3 hours, day and night, I would walk the quiet hospital hallways to see her, delivering her milk and peering in at her as she slept. I loved being with her, even if it meant just watching her through the clear plastic walls of her isolette. She was perfect and I was happy.
It wasn’t until my discharge from the hospital that I realized the gravity of our situation. They had explained to me that she would most likely be in the hospital till her due date August 14, but the reality had not sunk in. It was May, August was still months away, my mind couldn’t comprehend that and it didn’t try to until the day that I was discharged from the hospital.
That was the first time I had to say goodbye to my daughter. As I exited the hospital doors the bright white sun blurred my vision. Until that moment I had not felt like a failure. My body had done its part, I had delivered a healthy baby girl, a baby girl that the doctors assured me was doing better than most babies delivered at her level of prematurity. But, as I left the hospital, alone, I knew I had failed. What kind of mother leaves her newborn child? I cried the whole way home that day, and every day after that. My heart was broken, a piece of me left behind in the hospital.
This was not the motherhood I had imagined. I had no baby to snuggle at night, no sleepy mornings, exhausted, but in love with the tiny being I nursed at my breast. Instead I had heart ache, pain and loneliness. I saw motherhood all around me. Women walking infants, signs celebrating Mother’s Day, the sentiment seemed to be everywhere, and all of it reminded me of what I couldn’t do. I had lost every part of me that felt like a new mother, my body was thin and frail, my heart full of sorrow and shame, and my baby 18 miles away in a cold sterile room.
My Heart Yearned To Be With Her Always
Yet, I knew Penelope still needed me and I needed her just as much. I was determined to be the best mother I could, even if it was not how I had ever imagined it. I spent as much time at the hospital with Penelope as I possibly could. I learned how to do her “cares”, changing her diaper through the circular portals in her isolette and taking her temperature. I pumped every 3 hours day and night and I held her when I was allowed to. I obsessed over being with her. She was the only thing I could think of, the only thing that mattered in my life.
As I cared for her in the hospital, life outside the hospital slipped away. I ate, I slept, I resumed, as best I could, the responsibilities of everyday life, but my heart remained with Penelope. The person that left the hospital each day was just a shell of the person I used to be, a skin that I shed and left to animate the rest of my life while my soul stayed waiting, keeping my sweet baby girl warm. I pictured myself there always, her tiny face snuggled into my breast, and when I was away I shed quiet tears as I’d dream about being with her again.
Then, after 2 weeks, Penelope began to outgrow her tubes. First the UV light was taken away, then her respirator, next the IV, and finally the temperature regulator in the isolette. She was now consider to be in stable condition and ready to be moved to another room with an open crib. She had entered the “feeder/grower” stage where she had just two last conditions to be met: learn to coordinate the suck, swallow, and breath reflex, so that she could eat without a feeding tube, and outgrow her bradycardia, apnea, and desaturations. All of which the doctors assured me would come naturally in just a matter of time; and so we waited and even more my heart yearned to be with her always.
Days Turned Into Weeks
When she first moved rooms I was excited, it seemed as if this was the beginning of the end. She was progressing, and she would be coming home soon, or so I thought. But slowly the days turned to weeks and weeks to months. I continued to visit her, arriving every morning as the first shift of nurses came in and staying into the evening as the night shift arrived. I memorized every inch of my baby, each tiny intricacy of her body and how it worked, and slowly I learned to nurse and bottle feed her. Penelope could eat, she no longer needed a feeding tube. Yet still, the slowed heart rate, sounding alarms and purple lips persisted. She was not ready to come home.
As time passed a lump began to grow in my throat. It emergged like a heaviness, lurking, lingering, just bellow the surface holding down a pressure that willed everything to be okay. I watched as child after child was admitted and then discharged from our adjoining room and I sat listening through the dividing curtain as nervous parents prepared for their first overnight stay with their child. I longed for what they had.
During these conversations I often found myself choking down the things that made me human, crying softly, as I held Penelope close, hiding my tears. I felt ashamed. I had nothing to cry about. My daughter was alive! My daughter was healthy! I was able to hold her for hours and hours each day, but still my heart was soaked in the fear of loosing her. I longed desperatly for the ability to care for her without permission, to feel natural light on our skin as I introduced her to the world. I longed for anything but the endless routine of waking up alone in the night to pump, driving to the hospital seven days a week and not being able to move more than 3 feet away from the monitors that saved my baby’s life. I wished to never have to say goodbye ever again.
And then, one day, it happened.
I Awoke to the Morning that was our Turn
Penelope was ready to come home. That evening, after snuggling with her all day as always, we plucked the 3 plastic monitors from her chest, unwrapped the pulse oximeter from her tiny foot, and unplugged her for the first time since her birth. We collected her bottle and blankies and my husband and I followed as a nurse rolled her clear plastic bassinet back down the long hallway that she had traversed that first day months ago.
In our mother baby room I snuggling her close and propped her up in my lap looking at her. She looked strange without her wires, and yet it felt so right. I couldn’t wait to take her home, to be with her always. The warmth that had swirrled within my heart that first time I held her returned. I was happy. But the doctors requested one more night with her.
The morning after our overnight Penelope turned 60 days old, a milestone that brings with it a series of vaccinations. So while we went home to prepare for Penelope’s arrival, the doctors kept her to administer her vaccinations, a series of 3 shots containing 7 different immunizations. We would pick her up in the morning.
But Things Don’t Always Go As Planned
That night while I dreamed of the beauty of the night before, Penelope’s heartbeat slowed, her breathing stopped and she experienced yet another bradycardia. She would not come home that day or the next.
I listened quietly over the phone as her doctor explained what had happened and as each word left his lips I felt a piece of me break away. My heart was shattering, it was raw and exposed, and burning in my chest. If I had taken her home that night she would be dead. The truth descended upon me, crushing me. I needed to be with my daughter. I drove myself to the hospital, and found her, just as before, resting peacefully in her crib. I picked her up and sat down in the “mother’s chair” cradling my daughter in my arms. Everything was the same as it was before and yet I knew that I had changed, there was nothing left of me, nothing left at all.
I stayed with her into the afternoon, and when I left I prayed to feel nothing. I didn’t want to feel the tears that blurred my vision as said goodbye, as I stood in the elevator, as I presented my parking ticket at the gate, as I drove home. I didn’t want to feel anything ever, ever again.
I had reached my capacity. My ability to keep moving forward, my ability to hope, my ability to continue had disintegrated with my broken heart and when I finally arrived home, I closed the doors, turned off the lights and shut out the world. I vainly wished to never go back, to never see my daughters face again, to run away from all of it. And yet I knew, I could never be away from her. No matter how painful, I would always return to her. Always. And in some ways that knowledge hurt even more.
When my husband found me I was laying face down in the dark.
He sat me up on the bed, “You can’t give up. You need to pump, you need to eat.”
I refused and he turned on the light.
“You don’t have a choice.” He reminded me and went into the kitchen to make me soup.
He was right, and I knew it. I had to swallow my fear and continue. I had to be strong for her. Slowly, I pulled myself out of bed, my daughter needed me, no matter how broken I was.
The Last Days
My husband was my rock in the week that followed. He was the one that kept me from drowning in the the wave of emotions that continually threatened to wash me away. He took care of both of us when I was no longer able to care for myself, and on August 3, 2019, eleven days before her due date, my daughter came home for the first time.
She had spent 67 days in the hospital NICU, and although it was the most terrifying and humbling experience of my life, I am eternally grateful for the gift that is my little girl.
In writing this story I have left out so many people who help me get through this trying time. From family and friends, to co-workers and hospital staff, and even strangers at the Department of Health and Human Services, I am so thankful for the kindness they showed me and the sometimes enormous amount of time they spend going out of their way to help me. But in particular I want to thank my own mother. She was there for us from the day Penelope was born to the day of her discharge. She sat with me in the hospital nearly every day, always listening, always comforting, and never asking for anything. Even though she was not mentioned in this story, she was a huge part of it and my husband and I could not have made it through this without her. Love you always Mom.
Finally, I want to thank you for reading, and if you would like to read more about my journey into motherhood please like, comment, or follow trailridermama.com. I’m also on Facebook and Instagram @trailridermama. Aloha and looking forward to hearing from you!