Looking up
Grace awoke right on time, around 5 a.m., by screaming and writhing into the sheet of her pack-n-play in her uncle's childhood bedroom. She wore a watermelon zip-up onesie. Her purple feet poked through the bottom. I heard her from the monitor as we stacked bags by the door to the garage.
While Molly ran through the house to complete the final checklist, I rolled Grace over. The left side of her face was red from where she’d smashed it against the sheet all night. Her eyes were closed and scrunched. She wiped her eyes. She kicked her feet. I picked her up and walked to the kitchen table, the makeshift changing station. Grandma watched with a mask next to me. The onesie stuck to Grace’s skin thanks to the lotion we applied the night before — thick, in a square on her chest, as per instructions from the surgeons. Grace’s blue-gray eyes slowly opened and scanned the room. She smiled. She tried to roll.
She had no idea. No clue.
We walked to the car. Grace’s carseat hit a trashcan and it spooked Molly, who jostled her coffee and stained her sweatshirt. The drive down Ward Parkway was dark, the peach-colored sun just barely rising over the lush July trees. Country music played on the radio. Crackles from Grace’s paper came from the backseat.
“This is going to be a good day,” Molly said. She squeezed my hand.
By the time we exchanged the onesie for a sea-foam green hospital gown, Grace remembered she was hungry and let us know. By 7 a.m. she fell asleep on my shoulder, and by 7:25 she was in Molly’s arms headed down the hall to the operating room.
“We’ll go this way with her and you guys will go right down this hall to the waiting room,” a nurse said.
The wait would be about five hours, she told us.
Molly kissed the blonde fuzz on Grace’s head. She handed her to a nurse. We each grabbed one of Grace’s hands, and she squeezed back and shot a brief smile. Before the doors closed, I turned and made eye contact with Grace again. She might not have been able to comprehend what was about to happen, but she knew she was in the arms of a stranger, surrounded by masked strangers everywhere, headed away from her parents, and she looked completely calm. She’d been in this hospital before. Was born here in January. Lived here the first 50 or so days of her life. She knew its smell. Knows it well. She looked at me, she looked at the wall with a giant heart with messages of encouragement written in black sharpie that leads into the operating rooms. She couldn’t be bothered.
In the waiting room, Molly pulled wipes designed to clean iPhones and covered them in spray hand sanitizer, then wiped down a couch in the corner. We sat in the sterile air and settled in with coffees.
“Good day,” we said. And we tried to mean it.
I wanted to be somewhere else, so I went to Spotify and hit play on track one of Pink Floyd’s Dark Side of the Moon. I thought about watching classic rock documentaries in 7th grade and let the psychedelic music shoot me somewhere out of this fluorescent room, up into the dark maybe, on that other side of the moon. The drums and steel guitar kicked in.
Breathe, breathe in the air.
Don't be afraid to care
Leave, but don't leave me
Look around, choose your own ground
On the wall next to me is a picture of an orbital sunrise, the earth rising over the moon’s horizon. Next to that, a photo of Mars. Next to that, Saturn. And directly across from me on the couch is a photo illustration of a little boy, maybe 7 or 8, with a paper-rocket strapped to his back, pretending to jump and fly.
In his book The Anthropocene Reviewed, in a chapter about orbital sunrises, John Green writes that art is “where I go when I do not know where else to go. Because it can help me to see what I will never see."
I don’t know if I want to remember any of this. Who, really, would want to remember open heart surgery on your infant daughter? But there’s a small part of me that needs to write this down to believe it really happened. That at 9:44 a.m. on July 11, my daughter’s heart was taken over by a bypass machine that pumped blood to her body for her. And that, at 10:05 a.m., a surgeon used a sharp tool to cut through Grace’s skin, and broke through her 5-month-old sternum, and opened up her chest, and stitched together one part of her heart to another, completely re-routing the blood flow for the rest of her life. And at 10:42 a.m., her heart took over its post from the bypass machine and began pumping again.
Those things happened. They happened again today, whatever today may be for you, and it’ll happen again tomorrow.
A surgeon came out to give us the news the operation was over.
“Went well,” he said with a cadence that made you think he hadn’t just watched a miracle, but instead just rotated some tires and changed the oil on a pickup.
It was still a few hours before we saw Grace in the Cardiac Intensive Care Unit. And a few hours more before she woke up in a terror, in pain, hungry, hurting, head bloated with the new blood flowing into it. She cried and she coughed. She kept her eyes closed and kicked her feet so hard the IV in her right leg yanked out, splattering blood the color of cranberry juice onto the green sheets and white blankets with rainbows. She’d do the same to two other IV’s before the night was over. She yelled and scratched her face and spluttered vomit. Snot bubbled out of her nose and into her cannula tube feeding her oxygen. Tears collected in the beige stickers that kept her oxygen tubes in place. By 3 a.m., running out of options to calm her down, the nurse suggested Molly hold Grace. She did so in a recliner next to the bed. I held Grace’s arms and legs down while she slept in 3 minute intervals. But she’d then awake in anger, grunting and arching her back and screaming, and ivory gunk would collect in her mouth and nose and Molly would suction it out and sooth her back to an agitated sleep. And Grace would fall asleep, and Molly would rest her head on the back of the recliner, and every 200 seconds it would repeat.
Who, I ask again, would elect to remember this? We continue to be thankful that 10 years from now, Grace will not remember any of this. In fact, apparently in two weeks she won’t remember. One day she’ll see her scar and ask questions, and she might implicitly remember, but she won’t remember this pain long term. What a gift. But that doesn’t take into consideration that right now she still is feeling pain, and that pain is real and must be a combination of sharp and dull and constant.
By 5 a.m. Grace fell asleep, and so did we, on an almost-twin-sized couch-turned-bed tucked in the corner of the room. Nurses changed shifts. The sun rose. And at 9 a.m. we all awoke.
The next day was quiet. Grace finally slept. Even the strongest member of our family — the one with half a heart, the one who feels pain and instead of giving into medications fights to make her pain stop on her terms — even that superhero has to sleep. And she did that day, resting with oxygen in her nose, the birthmarks on her eyelids a deep purple, crimson wounds on her nose and under her eye from her battle with pain. It took a few days, but by Friday she smiled. She was in pain that day still, I assure you. But she smiled, and continues to endure.
On July 11, the day of Grace’s surgery, NASA released photos from its Webb Telescope. As NASA wrote on Twitter, it was “the deepest, sharpest infrared image of the early universe ever taken.” In one single image, hundreds of galaxies are visible, thousands of stars. The images were, essentially, HD versions of the Hubble Telescope photos from 2017. It captured the attention of the internet. On July 12, images went viral. Everyone was sharing them on Instagram stories.
To me, someone afraid most of my life of looking up and considering how small we all really are, the photos looked like a high resolution image of a carpet pattern fit for an arcade room inside a bowling alley in 1991. Regardless, it captured the wonder of the world, these images. And why wouldn’t they: each pixel of light was a galaxy. A galaxy. And these hundreds of galaxies in these images were, as NASA wrote, just a fraction of the known universe.
“If you held a grain of sand up to the sky at arm’s length, that tiny spec is the size of Webb’s view in this image,” NASA wrote. “Imagine — galaxies galore within a grain, including light from galaxies traveled billions of years to us.”
It was dizzying to read, the images dizzying to see. Miraculous. Terrifying. Astounding.
Who knows what those galaxies behold. Maybe nothing. Maybe worlds beyond our imagination.
But I’m not sure you always need to look up to be astounded. The science and skill to keep beating a broken heart the size of a walnut, the endurance of a mother’s love, the patience of a nurse, the strength of a 5 month old girl. That’s as breathtaking as any galaxy, to me.
It has been almost exactly one year since writing in this newsletter. I’m a little sorry. For anyone not aware, our daughter Grace was born in January with a complex heart defect. We spent about 50 days in the NICU and this is the first of a couple open heart surgeries she’ll need. I have been writing, just on my own as we navigate all this. I might share some in time. As of this writing, we’re still in the hospital with Grace as she recovers.
As life hopefully becomes more normal after this surgery, I’ll hope to write more often, if interested. Thanks for reading anyway.
Best Thing I Read This Week
Ok so here’s the deal. As a temporary stay at home dad I don’t have a lot of time to read the news, and a lot of the news is, well, a lot. So while I rock in the rocking chair hoping Grace stays asleep for a nap I’ve been trying to read more books. Anyway, I recently finished The Bell Jar and thought it was wonderful.
You should buy it from here:
Yes! Flat Water Free Press; this is well worth reading. We have a girl in our church who has been through this several times; it always makes me aware of the skill of the surgery team! But it's still good to pray, too! Thanks!!