In a Heartbeat
We had big plans last summer. Biking, swimming, and perhaps most important to our daughter, Cleome (Clay-oh-mee), her fourth birthday party only a few weeks away. She and I spent the ride to her pediatrician's office, that early June day, locked in summit negotiations about whether Little Foot or Barbie would win the coveted spot on her cake.
I wasn't concerned when the doctor heard her heart murmur again. We'd been tracking it since she was two, and it had never been a problem. But this time our pediatrician said the murmur sounded "odd." She frowned a bit as she listened and then with a shrug decided to refer us to a pediatric cardiologist "just to be safe."
"Let's rule it an innocent heart murmur once and for all," she said with a smile. "Fine," I said smiling back. I made an appointment with a cardiologist for the following week and went back to more pressing concerns like whittling Cleome's invitation list down from a medium-sized army to a small tribe.
The "heart doctor" had great toys in the waiting room and the walls were covered with cards and pictures from kids and their families. Cleome sailed through the EKG. She got to help put all the little stickers on her chest for the electrodes. She sat very still for the heart X-ray and came out of the room clutching a handful of stickers that said things like "My heart is made for love" and "Hearty har har."
I had envisioned our cardiologist as a kindly white-haired man with a twinkle in his eye and years of experience thumping kids on the chest. Sort of a Santa Claus with a stethoscope. Instead, he was in his early thirties and looked more like a graduate student than an accomplished cardiologist. He asked me a series of questions about our family's medical history: Any heart problems? No. How about the extended family? No. Had anyone in our families ever dropped dead before adulthood for any unexplained reasons? NO.
How about Cleome. Had she ever sweated while eating? Complained of fatigue? Had an erratic heartbeat? Had she ever turned blue? No, no, no, no. No to everything. She'd always been perfectly healthy and the only reason we were here was because of this heart murmur. "Great," the doctor said, as he wrote a few notes and nodded. "All her tests are fine. It's probably just an innocent heart murmur . . ."
And then he listened to her chest. And listened. And lay her down and listened. And sat her up and listened. He must have listened to her for ten minutes before turning to me with the same squint and frown as our pediatrician. "Hmmmm. There's something here. I'm not sure, it may be nothing. Let's do one more test. An echocardiogram."
I hid my concern from Cleome behind a cheerful explanation about how an echocardiogram was a special sound machine that helped doctors see and hear her heart through her skin. Cleome was unfazed by the technology. When they put The Little Mermaid video on the VCR above the exam table she climbed up eagerly and only complained when the technician's head got in the way of her view.
And that's when all our summer plans went out the window. The echocardiogram revealed that Cleome, our perfectly healthy, never-more-than-an-occasional-cold, almost-four-years-old, birthday-party-only-two-weeks-away little girl had a congenital heart defect and would need open heart surgery. "And I recommend you do it as soon as possible while she's still young," our young doctor said matter of factly.
Uh . . . excuse me? Did you say open-heart surgery? On My Daughter? I looked over at Cleome who was reading The Berenstain Bears and the Bad Dream. The irony of that didn't hit me until later. All I remember thinking was that some kid dressed up as a doctor was telling me that everything I'd believed to be true about my daughter and my life was complete fiction and we were going to have to subject our wonderful, spirited, boisterous little girl to major surgery.
As we drove home I gripped the steering wheel so hard my wrists began to ache. Cleome asked if we could stop by the video store and rent The Little Mermaid so she could see the rest of the movie. "Sure sweetie-pie," I said a little too brightly, "we can do that."
When we got home I put the movie in, turned it up really loud and called my husband, Michael. "You need to come home now," I whispered fiercely. He was confused and I knew he'd forgotten all about the doctor's appointment. It had been such an innocent blip on everyone's summer screen. I told him haltingly that we'd just gotten back from the heart doctor and the results "weren't exactly what we wanted to hear. Please, please come home now," I said shakily into the receiver. "Please come home."
That night after Cleome went to bed we kicked into crisis mode. I called everyone I could think of. I hit the Internet. I spent the weekend at the library. We became experts on the heart and all its myriad defects. The following week we got a second opinion. There was no mistake. She had an Atrioventricular Septal Defect--AVSD. A hole between the upper and lower chambers and a defective mitral valve that was letting oxygenated blood leak back into the non-oxygenated side of her heart. The defect was on the mild side but if she didn't have surgery the excess blood would begin to enlarge the heart and eventually, in late adolescence or early adulthood, she would begin to fatigue, her heartbeat would become erratic and surgery at that point would be much riskier.
Michael seemed to sleepwalk through those first few days. He hugged Cleome and me at odd times. He didn't call his family or tell his friends what was going on. I cried constantly at first but then moved past tears and began planning our strategy for survival. I checked our insurance and got recommendations on hospitals and surgeons. I was frustrated with Michael who was only slowly beginning to sort through his roiling emotions.
The cardiologist convinced us that Cleome would be fully recovered before school started in the fall if we did the surgery soon. We reluctantly agreed and scheduled the surgery for the week following her birthday party. At least one thing we'd planned this summer would remain inviolate.
The child-life specialist at the hospital recommended we wait to tell Cleome about the surgery until just a few days before so her imagination wouldn't have time to run wild. During the intervening few weeks we slipped home books about hospitals and discussed them nonchalantly. "See the boy in that bed? He's got a tube coming out of his arm." We re-read Madeline with renewed vigor. "Look at her scar. She must have been really brave to have a scar like that."
And then it was time to tell Cleome. Michael and I had rehearsed the conversation. We bought bagels and sat by Lake Calhoun. In a calm but serious tone we explained that she needed surgery to make her heart better. We used words like "easy parts" and "hard parts." The words "scared" and "owies" came up, but so did "interesting" and "adventure." The main thing, we reassured her and ourselves, is that we would be with her the whole time she was in the hospital. And everything was going to be fine.
Cleome took it in stride. She trusted our judgment completely. That was the frightening part. We knew the enormity of what she was about to go through. Of what we were about to put her through.
A couple days before the surgery Michael finally let go. He was in tears whenever Cleome wasn't around. This is the entry from his journal the night before the surgery:
"The shock of that initial revelation has hardly lessened . . . awaking to Elisa crying on my stomach, all the odd moments when the gravity of this situation would rise full force into tears and incredulity. When touching Cleome's perfectly beautiful little body and my hand would come to rest on her chest and I would realize that here, here, here, my angel would be cracked open soon and along with her lonely beating heart our entire lives would be at stake. Now, not even a workday of hours separates us from that moment, and you, my love, lay sleeping soundly in your bed hardly expecting the ordeal you are shortly to begin . . . we are all to begin."
July 23, 1998. A sunny, brilliant dawn. Michael squeezed my hand as I looked back at Cleome in her car seat on our ride to the hospital. She clutched a new Beanie Baby and stared out the window, quiet and bleary-eyed. I gave Michael's hand a firm squeeze in return and thought about how little control we had over the events ahead of us.
Down in pre-op we huddled with the other parents and tried to hide our strain behind plastic smiles. Cleome made us hospital bracelets and played with the other kids, blissfully unaware of what was to come. At 8:15 a.m. our anesthesiologist arrived. He gently spelled out the risks of anesthesia and reminded us that Cleome would look slightly puffy after surgery and there'd be numerous tubes coming out of her body.
Then Cleome's surgeon sat down and began to go over the risks of open-heart surgery. When he mentioned the possibility of her dying on the operating table (less than a one percent chance) and the fact that the mitral valve repair might not even be successful (a significant possibility), I wanted to gather Cleome up in my arms and run with her to the nearest exit. Parents are supposed to protect their children. But here we were giving complete strangers permission to stop our little girl's heart, reroute her blood through a heart-lung machine, saw through her breastbone, poke around in her heart and then, barring any complications, reroute her blood back into her body, start her heart again, sew her up, and hope everything would work like it had before.
No, I reminded myself sharply. Better than before! Her heart would work even better! When we bent down to sign the liability waivers, I looked into Michael's eyes and saw the same desperate mix of hope and fear I felt mirrored in my own.
And then it was time to go. Cleome was her usual chattering self when we went into the anesthesia room. She sat on my lap and picked watermelon flavoring to disguise the smell of the gas. While she breathed into the mask I crooned in her ear as I had done when she was a tiny baby, trying to coax her into a sweet, untroubled sleep. "Relax boola boo. We're right here with you. Just slow your breathing down and relax."
Michael was keening silently at my side. I was so focused on keeping Cleome calm that I didn't look up until she'd gone eerily limp in my arms. The anesthesiologist took her away from me and set her gently on a gurney. We left Cleome lying pale and silent on a gleaming metal table, artificially inert, breathing shallowly and much too quickly.
Michael and I made it three steps down the hallway before we reached for one another and broke into desperate sobs. We spilled our grief in a hallway crowded with the ghosts of hundreds of other parents who, like us, had stood weeping at the enormity of the unknown and the thought of their precious children lying like cold jewels on sterile tables, waiting to be carved up into something finer.
We stumbled to the waiting room and watched other families shuffle through the door in the same condition. At about 9:10 a.m. our cardiologist, dressed in surgical blues, came to tell us the operation had begun. By then the grandparents had arrived. We called friends and family. We let our coffee grow cold and waited without words. We were anxious and desperate to hear that things were going well, smoothly, no problems.
The surgery was supposed to take three or four hours and we'd been told to expect periodic updates. By 10:15 a.m. we were getting worried. Was something wrong? Why hadn't they called us? When our cardiologist came in at ten-thirty, we steeled ourselves for whatever news he brought. When he said they were finishing up and things had gone extremely well, we couldn't believe it was over so quickly. He was very optimistic and said the hole repair looked great. He said the valve repair looked good and although he couldn't guarantee anything, it might last the rest of her life.
We cried . . . all of us. We called everyone again. And then our surgeon arrived to take us to see Cleome in the PICU--Pediatric Intensive Care Unit. I thought I was prepared to see her, but nothing, not a hospital tour, or pictures, or warnings can prepare you to see your child after major surgery. Pale and unconscious. Tiny and vulnerable amidst the beeping machines and blue-gowned professionals. She had tubes coming out of her nose, mouth, neck, both arms, her urethra, and her chest. It was a horrifying sight. But underneath all those wires and tubes we found her there, our beautiful, brave Cleome.
We coaxed Cleome to consciousness slowly and gently. We stroked her arms and legs and crooned to her softly, willing her to wake up slowly and without fear. The grandparents came in and out during this time. They were all pretty nervous. Anesthesia is such a frightening magic.
Three hours later she awoke, scared. She couldn't talk because of the ventilation tube down her throat so she mouthed silently that she was thirsty. At five that evening they took her breathing tube out and she pleaded with us in a small hoarse voice for something to quench her terrible thirst. The nurses said no. It would make her vomit. "Please," she croaked sorrowfully, "can I have some apple juice?" We shook our heads sadly.
"Water?" It broke our hearts and we finally succumbed to her sad charms and let her suck a bit of water off a sponge. By nine o'clock that evening she'd thrown up twice and we regretted letting her have even that. At nine-thirty I got ready to leave and promised Cleome I'd be back before she woke up the next morning. She already knew the plan. Michael would spend nights with her and I would take days. They'd given her something for the nausea and she was drowsy and ready to settle down. After saying my good-byes, I paused for a moment outside her darkened room to listen to the strange lullaby that sang her to sleep that first night. I could hear the gentle gurgle of the drainage tube and catheter pumps, the steady electronic beeps of the respiration and pulse monitors, the quiet murmur of her intensive-care nurse as she talked herself through Cleome's various ministrations, and the sweetest music of all, Cleome's calm breathing as she fell asleep. She'd come through the worst of it. If I hadn't been so tired, I might have wept with relief. Instead I drove home in a dull stupor unable to feel anything except exhaustion.
By the next morning the tide had turned and Cleome's recovery was nothing short of amazing. They moved her out of the PICU that afternoon and she came home two days later. We'd been prepared to spend a week in the hospital. Her surgery was on Thursday and she brought her twenty-five new Beanie Babies home on Sunday. By Monday, we'd warned her twice not to jump on the bed. Really. If you hadn't known she'd just gone through open-heart surgery there would have been no outward sign to let you in on the secret.
Michael and I couldn't quite trust her recovery. We'd imagined it as something slow and painful involving weeks of soft foods and sickbed activities. Instead, within five days of her surgery Cleome was literally running around like nothing had happened. The hardest part was preventing her from doing too much too soon. Certain activities were forbidden until her incision and breastbone had completely healed. No swimming, swinging, bike-riding, or monkey-bar-climbing "until big kid school" started in the fall. So we took a lot of walks. We blew a lot of bubbles and watched way too many movies. Not the summer we'd planned, but so much better than the one we'd imagined at the start of this unforeseen adventure.
Today, last summer's frenzied activities are mostly memories captured in words, pictures, and in the scars on Cleome's chest. She rarely mentions them and she lifts her shirt without a hint of self-consciousness. She's been begging us for a bikini. I hope she always feels this way, but I know better. The scars make her look different from other people and this culture is hard on girls.
But I'm not too worried about it because I know what kind of a person she is. Those scars are a testament to her bravery. I've seen firsthand the strength of her spirit and the depths of her dignity. I know of the enormous challenges she's met and conquered. She'll be fine. We all will. As a family we've learned invaluable lessons. We can respond with wisdom and grace under pressure. We can pull together and not apart during crises. We can withstand even more than our potent imaginations can invent. And we have a greater respect for life's unpredictability. We've learned how quickly plans can change, how every detail in our lives can be altered irrevocably. It can happen in a heartbeat.
Elisa Bernick is a St. Paul writer. This is her first contribution to Minnesota Parent.
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