a dream, and a story that needed to be told

I was going to get a dental checkup. I had Rocky with me. The “clinic” was outside, next to a hospital, right there on the dirt and weeds. There were dozens of people in line to get into the hospital. I went and sat down in the dentist’s chair and Rocky sat in my lap. A young doctor came and sat in the swivel chair and picked up my chart. He was in his early 30’s, with sharp dark features and a narrow face – not unlike Rocky’s cardiologist, but with a hint of East Indian in his face. We talked a little, and in the context of the conversation I told him that Rocky had Tetralogy of Fallot, a complicated heart defect. He did a subtle double-take, looked at my chart again, and realized he knew who she was. And he was on the cardio staff taking stock of her situation. His tone became cool and professional, matter-of-fact. He said, “We’ve discovered from her last echo that she has myopia [I know that’s a real thing, but of course it meant something different here]. It’s a hardening of the heart tissues. She’s going to need another surgery at some point, most likely fairly soon.”

I sat stunned. Everything, all the trauma that I’ve been putting away since finding out she won’t need another surgery, it all came rushing back into me like a breath from the dead. Fear – horrid, terrible dread, the kind that feels like a rat gnawing you from the inside. Rocky was playing in the dirt now a few feet away, and I watched her with tears welling up, and I told the doctor, “I was just starting to get used to her being ok, how free and wonderful that felt. I don’t want this feeling back. But I guess this is it, isn’t it? The way I’m going to feel from now on.”

The doctor looked at me askance, but I just sat there feeling it, sinking in a lake of fear, watching my beloved, happy daughter with the monster hiding inside the pitch black of her tiny body.

Melissa came to my side. I said, “I have to tell you something.” Her face became ashen. “It’s her heart,” she said. I explained it to her. She got angry, and her words were sharp and fast. I felt so badly for her. And I felt like a line had been cut between us.

I got up and wandered through the crowd, holding Rocky’s hand. A large, friendly-looking man said, “what’s she got?” and I said, “Tet, and myopia”. He said, “Wow. My son had Tet. I really hope you get the shot next time, that prevents myopia.” I stopped in my tracks, not quite believing what I was hearing. A shot? That would have prevented it? Why didn’t they tell us?

Then I couldn’t see her anymore. I beecame alarmed and turned in a circle, looking. The doctor had taken her away, kidnapped her, along with a group of other people from the hospital. They had taken her to do tests on her heart. I raced through the crowd and into the hospital door. I ran into a bathroom with stalls, and found her crouched in one, looking scared. She reached her arms out to me and I quickly scooped her up and cradled her head against my chest. I heard the door open. The young doctor and another doctor, a dark-haired woman, came in to find Rocky. My first impulse was to just run, but I caught myself, realizing that I would not be able to get past them unless I was smart. I couldn’t use my arms, because I had to hold Rocky. So I ran out and ran straight to the woman, right up close (the way my former boxing coach taught me), and I bashed her in the nose with my head. She crumpled, clutching her bloody face. I ran straight into the doctor and slammed my knee into his crotch. Then I ran as fast as I could, out of the hospital, into the trees beyond.

I was met in the woods by Melissa and three other people. They were our friends, and they led us to a wooden cabin on the outskirts of a small mill town. I slept curled around Rocky, Melissa curled around the other side of her, and we all took turns keeping watch through the night.

In another place, my younger brother was a beautiful, long-tailed bird. He was hurt and couldn’t fly. A gray government armored truck rolled up. It had a box-shaped machine on the front of it. The box opened like jaws, clamped down over my brother, and swallowed him. Then it drove away with him. He was special somehow; he had some sort of strange illness that they had created, and they had taken him to study him. I found a long feather, iridescent black, left in the street. There was blood on it. I picked it up. The end of it was bone. The bone was brittle and shattered into dust in my hands.

——————————————————

For the first two weeks of Rocky’s life outside my womb, my family was in a state of bliss. I was laid up from some serious tearing, so all I was able to do was to lie in bed with my new baby and stare at her, and feel her soft tiny feet on my pillowy belly skin as she nursed. Melissa, Sunny the dog, the baby and I spent most of our days like that, all together, being cared for by our friends, parents and neighbors.

At two weeks old we found out she had a congenital heart defect. A serious and complicated one, that would require surgery. Our joy and bliss was shattered. We spent the next 3 1/2 months trying to enjoy our new baby, but the dread and fear gnawed at us day and night. I would lay my head on her chest while she was sleeping, every night, and listen to her heart. She didn’t have a heartbeat. Her heart went “WHOOSH-WHOOSH-WHOOSH-WHOOSH”, very fast and thunderously loud.

The day of the surgery. It was early morning. We had a huge group of friends, family and church friends around us. When it was time, one of the church priests led everyone in a prayer. We took the long walk down that white hall, Melissa and I in front holding little Rocky, and everyone around us. We walked to the wide double doors. They opened, and after kissing and hugging her, we handed Rocky to the anesthesiologist. She started to cry over his shoulder as he walked away. The doors closed. Melissa and I collapsed into each other’s arms, sobbing. I think everyone was crying, but I couldn’t see them.

I don’t know how long the surgery took. I felt like the better part of a day. We sat in the ICU waiting room, and a stream of friends came and went with food and support. A strange calm came over me. We got periodic calls from the surgery nurse, telling us what stage the surgery was in. Every time the phone rang the room became hushed, as everyone waited for the news.

The surgeon has started the surgery. [He used a bone saw to cut through her sternum.]

Everything’s going normally. [Her heart and lungs are stopped; a bypass machine is working for them.]

The surgeon patched the hole successfully, and there was another hole we didn’t see before. He patched that too. [It was a small hole, and he had to cut it bigger in order to be able to patch it. He used Gortex.]

The surgeon shaved off muscle bundles at the pulmonary valve. [The valve will never work properly.]

She’s come off the bypass successfully. The surgeon is preparing to finish. [The surgeon has long, thin fingers. He could have been a piano player.]

She’s sewn up and coming up the hall. We’re all ushered out to the hall to wait, to see her as she’s wheeled by on her way to the ICU. We’re waiting, together. Then we hear the wheels. Then they come into view, metal rails and wheels and bags and the surgeon and nurses and one very tiny baby hidden behind bandages with tubes and lines sticking out of her. She is wheeled to a stop, briefly, in front of us so we can see her, put our hands over our mouths, see the monitors, see that she’s alive. She’s alive, somehow, completely unconscious, her heart is beating and her lungs are being worked by a machine, and she doesn’t look like my Rocky. Then she’s wheeled away.

The surgery was successful. I did have to deal with a few surprises once I was inside, but she did very well. [At first her heart couldn’t restart on its own. They had to bring it back with a pacemaker.]
The ICU room. Equipment, monitors with half a dozen foreign codes, outlets clogged with plugs attached to wires snaking around in a hundred directions. A chair to sleep in. My tiny baby girl unconscious, with a breathing tube down her throat, a feeding tube down her nose, her little hands held loosely out to her sides with velcro straps so she couldn’t move too much, not that she moved at all, those first few days. My breastmilk is vacuumed out, labeled, frozen, thawed, and then pumped into her stomach, and when my milk starts to dry up they use the excess from the first day. The noises of that room. The breathing machine, in and out, in and out, a rhythmic sucking sound. The constant beeping of alarms on the monitors. The beep-beep-beep-beep of her heart monitor. Or was that silent? Rocky’s grandmothers crocheting side by side in the gray light of the little room. Pretty nurses with jokes. Melissa. Leaning on the rail, at Rocky’s side. Just looking, and looking. Constant. Holding her tiny hands. Stroking her. My fear reflected in her eyes. Will our baby survive this? They tell us she will. It’s all normal, they say. Normal.

On the fourth day, I break down.

Then the day comes when they let her wake up. I walk into the room and she’s in Melissa’s arms. Just like that. They let me hold her and nurse her. She is covered in a white bandage down her front and I have to be careful not to disturb the tubes sticking out of her belly. My milk comes back.

Recovery. They take out the tubes, the wires, and most of the lines. We’re moved upstairs. She starts having spasms from coming off the morphine. It’s normal, they say. She starts to cry. Her face gets red with the pain. They give her Tylenol. I sleep in a bed with her. She cries for days. It’s all normal, normal.

We bring her home quietly. There’s no welcome banner across the door. We sit on the couch and hold her. She’s still and unsmiling, and she looks somehow lost.

In a few days, she’s happy again. We are tender with her body, and she is making up for lost time. I have never been more grateful for doctors, nurses and one incredibly skilled surgeon with piano hands.

Rocky has a long, white scar down the front of her chest. It slants slightly to the right, like a mast in a light breeze. Underneath the scar, below the skin, bone has healed around the metal that rejoined her broken sternum. Just south of the incision scar, there are two small dents side by side, where the tubes that drained the fluid from her heart exited her body. All over her, if you look closely, are tiny marks where lines were put in and out of her, for five days, into her veins and into her heart.

Her heart. In a miracle of survival, the tissue has grown over the patches. Gortex is now embedded within the walls of her heart. Now, when I put my head on her chest, I hear a heartbeat. Inside the heartbeat is a faint whoosh, a murmur created by the still-faulty pulmonary valve. And someday, the valve will need replacing. But if all goes well, we’ll have many years, decades, for advancing technology to reduce the procedure to a shot in the arm. In the meantime, we have a daughter to raise.

It has taken me over two years to be able to write this story.

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6 responses to “a dream, and a story that needed to be told

  1. For those of you who were there or went through this from afar, please feel free to post your experience and memories here.

  2. My god. How incredibly beautiful, and heartbreaking. I’m amazed at your telling, and honored, completely honored, to hear it. She was meant to be your daughter. Bless you for giving her to the world.

  3. I remember how jaundiced she looked after the surgery. That, and how swollen- or should I say bloated she looked, from the meds I think you told me. I think she had been woken up from the induced sleep state but was sleeping normally when I visited. I remember how it seemed like such a huge, life-altering thing but all the hospital staff were so matter of fact and saying everything was normal. Normal didn’t look like that to me and I was worried. It seems now like it couldn’t have been Rocky. She is too energetic, too spunky, too… normal.
    Love to you and the whole Oxen team,

    Sparks

  4. Oh oh oh oh oh oh oh!

    I am crying here at my desk and the UPS guy just gave me a funny look as he handed over his packages.

    I need to go blow my nose.

  5. It seems like (from what I can see looking in from the outside) that most parents have all sorts of fears about possible things that can happen to their children. Even though this one is not completely in your control, you can put a name and face to it, and have a good idea of how to work with it. Perhaps this is better than the nebulous, faceless fears many parents have.

    I hope that Rocky has gotten her major childhood challenges out of the way with this incident early in her lifetime, and that you don’t have any more gargantuan fears to face over your daughter’s health and safety.

  6. Thanks, guys, for taking the time to read the story, and for pitching in comments.

    Epiphany – you’re right, there’s a myriad of unknowns that parents face, and in this fear culture, a lot of American parents experience intense anxiety as an accepted way of life. For me, and possibly for many others, the anxiety is basically fear of losing my child. As much as I hate silver linings, especially ones that involve my baby daughter having major surgery, the good side to this experience was that I had to face that anxiety head-on from the beginning. I was forced to feel it, see it, name it, learn to cope with it as what it was – fear of Rocky dying – instead of stuffing it down and having it come out in all the weird ways it does with many parents. It amazes me how many parents allow themselves to get eaten alive by a hundred little what-ifs.

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