Category Archives: aortopexy

I Went Outside

tree skyWhen my daughter spent six days in the hospital for the cardiac surgery that would change her life, I saw daylight and felt fresh air only for a few moments a day on my way from the garage to the hospital or vice versa. When we went home, we resigned ourselves to staying inside some more.

Sammi was cozied into a corner of the couch that her older sister had lovingly lined with soft blankets and fluffy pillows, but she was itching to move. Unfortunately, doctors’ orders were that she not only sit still, but that as long as she stayed on strong pain medication, she also needed to be accompanied up and down stairs by an adult and watched when she was in the bathroom. She grumbled and sometimes outright cried about this state of affairs. I did neither, but the emotions I’d kept in check in her presence for the last week were beginning to bubble close to the surface. Though I’ve never had trouble staying calm and steady for her, I knew there was a limit to the holding-it-together I had in me. Sooner or later, I needed to get out.

When my husband went back to work, there were still two weeks of at-home healing left for Sammi. One of my close friends had offered to come over one day and sit with Sammi so that I could get out, just for an hour or so. Deciding to take her up on it was hard for me, though I knew all the platitudes about mothers needing to put on their own oxygen masks before helping their children. I needed the break, and I also needed to be watching Sammi at all times for any sign that something — some undefined something — was going wrong.

In the end, I accepted. Continue Reading…

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The Sound of Water

glassofwaterMy eight-year-old daughter took a long drink of water through a straw, and I waited on the edge of a pin (on the edge of her hospital bed) to ask her a question.

As the first few drops of liquid hit her tongue, she did what she’d always done when drinking: she puffed out her cheeks like a chipmunk and held the water there. Slowly, I watched her throat as she began to swallow. Her eyes widened, and she swallowed everything in her mouth at once.

Finally, I asked. “How does swallowing feel, Sunshine?”

She set down the cup on her tray and looked at me, her hands fluttering up to her chest, trailing IVs and tubes behind her. The late afternoon light through the far window didn’t reach her bed, and so, lit by fluorescent lights above and dazed by morphine, she rested back on her pillow and answered:

“It feels so different!”

“How so?” I asked.

“When I swallow, it goes down like ssshhhhhwwwwwwww!”

“And what was it like before?”

“It was like ccchhhhk, ccchhhhk, ccchhhhk…”

With her skin still clammy and pale, only hours out of surgery, she reached again for the cup, drank another gulp, and said, “It’s so cold when it gets to my tummy.” Continue Reading…

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Punished

ivWhen my eight year old daughter Sammi went into the operating room to have an operation to unkink her oddly bent esophagus, the surgeon’s intention was to make two long incisions across from each other on her back: one to access and gently move her aorta to one side, and the other to move her esophagus itself away from its current position and sew it to her chest wall, securing its shape with stitches we would never see.

This delicate set of plans was expected to take nearly six hours to execute.

As we sat in the waiting room that day, surrounded by the useless things we’d brought with us, I couldn’t help but think about what was happening each minute Sammi was away from us. At the three hour mark, however, we were surprised to receive a report that the surgeon was closing the incision. He’d been able to complete the entire repair through one incision instead of two.

Although we were relieved — one scar instead of two! — it wasn’t until late the second night after surgery that we understood what kind of blessing that was.

About two hours after the surgeon began closing his single incision, we were allowed to join Sammi in her hospital room in the cardiac ward. We found her with her eyes half-closed, lying with her bed slightly inclined, her right finger and thumb encircling a small tube with a button on it.

I pressed my lips to her forehead, which was warm and sticky. “You did great, Sunshine,” I whispered into her hair. “Do you need anything I can get you?”

She moved her lips, and a scratchy breath came out.

Water, she mouthed. Water, please.

“Can she have water?” I asked.

The nurse said she could, and I held a cup with a straw to her lips. She swallowed, then winced and twisted her neck away. She had been intubated in surgery for hours, and her throat was raw and dry.

We sat quietly at her bedside. I ran my fingers over the bare spots on her arms while she drifted, the button-wand in her hand delivering more morphine every time she pressed it. She asked for movies which she watched for only a few moments at a time.

Somehow a day passed, and the pain seemed manageable, and then the silos of pediatric medicine began to show themselves. Continue Reading…

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What to Bring

bagIf you are ever the person I was, packing a car to drive to the hospital for your daughter’s seventeenth time under general anesthesia (this time, to move her aorta away from her esophagus), you will need to bring many things with you. Take notes. I know exactly what you will need, if you are ever the person I was.

First of all, you need clothes for you. You need soft pants and a roomy shirt to sleep in on an uncomfortable set of cushions by the window, cushions whose ill-suitedness for restful sleep you will not notice as you sink, delirious with exhaustion, in and out of a black slumber twenty times a night. You need thick socks and slip-on shoes so that you can perch on the edge of the bed and then jump off quickly to skitter across the room and grab the emesis basin, the phone, the nurse’s call button. You need more hooded sweatshirts than you would have predicted. You will be far colder than one would expect.

You do not need clothes for your daughter. Though you may have thought ahead to the incisions and the need for button-down as opposed to pull-over pajamas, you have somehow forgotten the snaking tubes and lines and leads and wires that would need to be disconnected in order to manage something as complicated as sleeves. She will only need hospital gowns. The pajama bottoms, while a nice touch, are only an impediment to quick bathroom trips, of which there will be many.

Perhaps, just bring her some socks. Continue Reading…

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The Second Time Is Different

Sending a baby into cardiac surgery is hard.

I brought Sammi to the hospital that morning in 2006, and she was wearing fleece pajamas covered in frogs. She was 13 months old and had a light layer of soft duck-fluff hair that stuck to my face when I cried, but she had perhaps a word or two in her vocabulary, neither appropriate for anything approaching real communication. She was beautiful and soft, and she smelled wonderful, and I could trace the shape her body made on my torso as she laid there, but had I lost her that day, far more of what I would lose of her was in the future and amorphous. Our experiences together until then were primal still — nursing and holding, touch and smell, fear and love.

It was all uncertain then: who would she be? what was she like when she was not sick? how would her voice sound when she learned to sing? 

She was a mystery, yet, and grieving a mystery is still grieving, but it’s fuzzy and intangible. I would never know quite what to miss. Continue Reading…

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