Who Will Hold My Heart? A Heartiversary Tale

I was more likely to play school than to play house. Had I imagined motherhood, it would not have begun with cardiac surgery. Or with wires, tubes, a ventilator, medicines, oxygen, daily x-rays, and ultrasounds. I would not have been on first-name basis with my daughter’s cardiologist and her first babysitter would not have been our favorite PICU nurse. My imagined life with a newborn would not have included pumping breast milk eight times a day while a machine fed my baby. Or sneaking into her room to give her medicine and food via a tube while she slept through the night. Or fighting with a one-year-old get her to drink half an ounce of milk. Most of all, however, I think I could never have imagined that it would take nearly a year for me to fall in love my child. Or, that once I did that love would be the fiercest and most complex emotion I’ve ever felt.

Charlotte was born on May 9, four weeks early via emergency C-section, having decided to come into the world dramatically, by dancing in my womb and tossing the umbilical cord around her neck. When I awoke from the stupor of general anesthesia, I was alone on a metal table, surrounded by curtains, and completely ignorant as to whether I’d had a boy or a girl. Groggily, I called out, “Hello? Where is everyone? Where’s my baby?” Hot tears wet my cheeks.

“You had a girl!”

Charlotte at Children’s Memorial Hospital on May 12, 2005, the first time I saw her after the transport.

Twelve hours later, the pediatric transport team came to my room so I could sign transfer papers for her trip to Chicago’s Children’s Memorial Hospital. I burst into tears.

“What is it, honey?” asked the kind transport team lady.

“I haven’t seen her yet,” I sobbed. “I haven’t seen my baby or held her and you’re taking her away.” 

“Don’t you worry,” she smiled. “Once you sign these papers, she’s mine. I can take her shopping on Michigan Avenue. Or, I could bring her to you. No way I’m taking your daughter out of the hospital before you’ve seen her.”

A very long twenty minutes later, she rolled a transport incubator into my room. Inside this Plexiglas box was a tiny 5.25 lb bundle, more diaper than baby, peacefully asleep. Shifting to the side of my bed, I leaned over as far as the pain from my surgery would let me. I could barely reach far enough into the porthole to pet her skin.  Philippe took photos of our first encounter. Then they left. For the next two days, all I had were those photos as I listened to the coos of new parents and cries of their newborns on the maternity ward.

Once I was released, Philippe and I spent as much time as we could in the PICU. I snapped photos, preserving forever the only seven days she would have without battle scars. We were lulled by the rhythm of the pump feeding her through a tiny NG tube. Charlotte calmly sucked her thumb and held tight to my finger for an hour at a time. In those early days, I felt this odd symbiotic feeling—this little critter had been inside me for months. At times I physically ached to be near her. I thought then that I was falling in love with her more every minute. In truth, I had no idea what it was to love my daughter.

We got to the hospital very early on May 16 so that we could hold her before her open-heart surgery. Then she disappeared down an endless white hallway, cradled in the arms of a tall anesthesiologist. I couldn’t breath as his footsteps echoed toward a cardiothoracic army ready to fight for her life. But when my husband, my rock, cried like a baby and fell into my arms, my heart shattered. My fears, at that moment, were about Phil.

Eight hours later, the nurse tried to prepare us for what we’d see.  “Charlotte is medically paralyzed and asleep,” Sam told us, “She is attached to a ventilator.  She has two chest tubes, a main line for her meds, a Foley catheter, and IVs on the back of her hands. Three IV poles hold pumps giving her medications.”

My baby, post-surgery, in a medically induced coma that allowed her to heal. (May 16, 2005)

Nothing, however, could prepare us. All those wires and tubes, all those bandages and splints, hid Charlotte from view. Standing at the door to the PICU, we had to let our eyes adjust, like when you leave a dark space and have to wait a moment to see when you enter into full sunlight.

Over the next six weeks, wires and tubes slowly disappeared. We saw our baby’s eyes again and thrilled as she wiggled her hands and legs. We rejoiced when she recognized our voices. Maybe that was when I began to pull back from her. I refused to furnish the nursery or buy any baby supplies. Nurses dressed her in adorable onesies from Old Navy while I swaddled her in plain hospital blankets. I feared the midnight phone call telling us that she wasn’t going to make it.

I bathed her, changed her diaper, read and sang to her, and took dozens of rolls of photographs. I pumped my breast milk so that she could receive it through her NG tube. I followed every detail of her care, taking copious notes. But, I questioned daily whether we had made the right decision, bringing her into the world to suffer through this and who knew what else. I was not compelled to sit with her while she slept. Yet, every time I returned to her bedside I melted at the sight of her, peacefully asleep with her little hands up by her face or conducting music.

I was alternately terrified that she wouldn’t recover and impatient to get her home. Resentful of every healthy baby I saw and grateful that Charlotte was recovering. Guiltily imagining my marriage imploding after a worst-case scenario and moved at the sight of my husband with his daughter.

After seven weeks, she came home tethered to oxygen, still partially fed through an NG tube, and taking 8 medications 11 times a day. Within an hour, I’d  inadvertently pulled the NG tube out of her nose. Later, we went to Starbucks where we pretended that every baby had an NG tube and oxygen, ignoring the curious looks from our neighbor-strangers. In my dreams of motherhood, this was not the homecoming I would have imagined. But in June 2005, it was the homecoming I’d longed for.

I may have thought I was ready for motherhood, but I hadn’t been ready for this. By September, I wasn’t sure I could be a good mother to Charlotte. I felt tired, alone, frayed. I feigned optimism in my blog posts, hiding behind “just the facts, ma’am” posts and humorous stories of our screw ups. My friends and family did not notice I was faking. I pulled away from them, believing they feared or pitied our struggle.

We muddled through, dragging Charlotte to her weekly weight checks, cardiology follow-ups, GI appointments, etc. Essentially, the only time we seemed to leave the house was to go to a doctor’s appointment. Sometimes the only adults I talked to in a week were her physical and speech therapists.

I don’t want a medal or to hear how amazing and strong I was. Philippe and I did what parents do, we took care of our child, making sure her needs were met. And we did it with what joy and humor we could find. We accepted help when it was offered; most notably from our wonderful Cantor Amy who insisted that all she wanted to do on her day off was hang with Charlotte. (I think Amy just wanted me to get a shower and walk,. Bless her for that.)

Charlotte’s smile when she woke up each moment shone like the sun after a storm. Her giggles gave me hope. That was the reward. Still, it was the hardest thing I’ve ever done. I enjoyed, her; I loved her. Though I barely remember those days, they are imprinted in my DNA.

September, October, November passed in a blur. We obsessed about her weight, worried she’d suffer a developmental setback. Adjacent medical diagnoses piled up on top of her heart and feeding disorder. One of us was always up past midnight for her twice nightly tube feedings. Charlotte slept 12 hours a night, but we were zombies. I remember the struggle and the stress, but I recall very little about my baby. I was still so focused on feeding and reflux that I can’t tell you when she spoke her first syllable, waved hello, or cut her first teeth. What kind of mother can’t tell you those things?

Eventually she resisted the NG tube, pulled it out, and prevented it from being inserted. We tried going without it, hoping her “survival mechanism” would kick in and she’d eat. Instead, she slowly stopped eating. The NG tube went back in. With her medical team, we gave in to the idea of a G-tub—a tube providing nutrition directly into her stomach.

Then she developed reflux. She stopped eating. December through March bled together.  More teeth. Baby syllables. Little developments that paled next to midnight crib changes, feeding battles, and frustration. Daily vomits. Outings and play dates had to be scheduled around feeding. I lost weight because feeding her made me lose my appetite. She refused to eat for her father so most of her feeding was on me.

In every other way, Charlotte was delightful. She crawled, cruised the furniture, babbled. She loved the park. She played with her toy piano or activity table for 15 minutes all by herself. She snuggled, loved listening to books, and laughed at Elmo. It was clear that she’d be quite a handful as soon as she walked and talked. Frankly, if it hadn’t been for the feeding issues, I wouldn’t have thought much about her heart.

 As she approached her first birthday, she was only eating about 10% of her daily calories by mouth. Reflux and vomiting were just part of Charlotte’s daily life, like asthma for some kids. I finally admitted to myself that the vomiting wasn’t a drama, just a bit more laundry. I thought, “If she can forget it in ten minutes, I should try.” We got a smaller feeding pump and were more mobile. We took long walks while her food pumped. Many mornings we met our buddies at the park, the girls swinging while mommies gabbed over steaming lattes. Still, our dreams of normality were eclipsed by our daily struggles.

Charlotte’s ability to learn and communicate fascinated me. I turned to putty when she snuggled her head into my neck or grabbed my hair. Her resilience moved me—once a reflux episode passed, she didn’t see what the big deal was. Reflux was all she knew. I was devastated that feeding her was not the joy I’d anticipated, but relieved that Charlotte didn’t understand the pain it caused me.

On her first birthday, I snuggled her on my lap, with her head on my chest. I whispered, “This is your safe place, sweet girl, your home, your “olly olly oxen free.” If I can’t make it better, we’ll talk about how we can make it better together.” She snuggled closer, beaming at me.

I had given in at last to the fierce love that binds us, choking through tears as I whispered,  “But who will hold my heart the next time they take you down the hall to repair yours?”

Sometime in 2006, surrounded by the army of stuffed animals that follows her wherever she goes.

Thanks to Finish the Sentence Friday for the Mother’s Day prompt which finally got me to finish this essay I’ve been working on for 14 years!

4 thoughts on “Who Will Hold My Heart? A Heartiversary Tale

  1. Hi, this is so lovely, and has a warmth that comes from your looking back. We remember those days. Love, Julia

    Julia Lesage
    3480 Mill St.
    Eugene OR 97405

  2. Oh wow. You’ve been working on this for 14 years? I’m SO GLAD it’s now out in the world and that there are mamas out there thinking “they got through it, and so can I.” Thank you for writing it and for sharing it with Finish the Sentence Friday. Also, somebody very dear to me was born on May 9. It’s a special day. You’re an amazing mom. To see a child wheeled down a hallway and then in recovery? You’re a beacon of hope for all going through similar things. ❤

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