Vodka Yonic features a rotating cast of female writers from around the world sharing stories that are alternately humorous, sobering, intellectual, erotic, religious or painfully personal. You never know what you’ll find here each week, but we hope this potent mix of stories encourages conversation.
I have taken my son’s temperature 62 times; changed his diaper 29. I have held him 12 times — always with assistance, never without tangles of cords attached to him. I’ve watched his color change from pink to red to purple to gray and then finally, thankfully, back to pink again. He is 50 days old.
When I was 26 weeks pregnant, my husband and I learned our child had a major heart defect and a chromosome disorder called 22q11.2 deletion syndrome, also known as DiGeorge syndrome. We were shocked. Neither of us has a family history of the disorder. I drove myself (and my husband) crazy researching everything: survival statistics, 22q symptoms. I found myself deep in Google holes, clicking hashtags at 3 a.m., trying to figure out exactly how long he’d be in the NICU, what health issues and physical characteristics to look for, and how to prepare for developmental delays. When we got the diagnosis, it was the worst thing I could imagine for my kid. But after a week of moping, I bounced back. It’d be tough, but he’d be fine.
Now, my child struggles to breathe daily — even with a machine doing all the work for him. He’s had reaction after reaction to different drugs. He falls apart when you move him, his oxygen saturation plummeting so fast that the monitors can’t keep up. We’ve learned little about why his anatomy is behaving this way, but we have learned a valuable lesson: It could always be worse.
There were times in the beginning when I dreaded my son coming home with a feeding tube. How inconvenient and complicated, I thought. That stupid feeding tube is going to ruin all of his photos! But that was before his airway was intubated, before his kidney injuries, before multiple setbacks and hundreds of life-saving actions by his nurses and doctors. I was worried about a feeding tube? Bring that sucker on if it means my kid comes home. If it means he can breathe. If it means his heart isn’t broken.
As the days go on, I find myself bartering in order to get him out of the hospital. Just tell me what he needs and we’ll make it work. We’ll take a nasal cannula forever if we can just get him off the vent. He can’t be around cats? They’re halfway out the door already. He needs to live in a bubble? Done, as long as we can visit. He’ll need us for food and such.
But for now, we live in the world of the NICU. After seven weeks, I can easily discern between banal beeps and the high pitch of the “oh shit” alarm. I know what’s edible out of the cafeteria (practically nothing ... get the grilled cheese if you’re in a pinch). I have learned not to panic when my kid’s oxygen desats — unless it goes down, down, down ... but then there’s a point when you can only be so chill. I still freak out when I leave and doctors call me with an update. Can we get a class for doctors that teaches them to first say, “Your child is currently fine. Just calling to update you”? Seriously, is that so hard?!
Phone etiquette aside, the NICU is where I have seen the worst days of my life, surrounded by the best people I’ve ever met. Nurses have cried with us, but more importantly, they have laughed with us, helping cultivate the dark sense of humor you need to cope with life-and-death situations every day. I’ve learned the key to a nurse’s heart is the same as to any decent person’s I’ve ever encountered: candy. They’ve become more like good friends who happen to have a specialized skill set that allows them to hear my son’s silent cries. Doctors have breathlessly sprinted up floors to get to his bedside. Strangers who’ve lived through the song-and-dance of the NICU world have reached out with kind words and shared beers.
These first months of my child’s life have been different from the way I imagined they’d be. But it’s his life, nonetheless — albeit one that’s illuminated by a fake sun lamp. Maybe his first words won’t be “blood gas” or “bolus.” Maybe he’ll grow up and be a doctor. Maybe he’ll grow up and hate doctors. But until then, I’ll smile when I see the grimace that he makes when he accidentally gets a taste of the antibacterial soap off my finger, knowing that it’ll be the same face he’ll make when his dog finally gives him a big old kiss right on the mouth. At home.
November is 22q awareness month; 22q is the second-most common chromosome disorder. Visit 22qfamilyfoundation.org for more information. Congenital heart defects affect 1 in 100 babies. To find out more information, visit childrensheartfoundation.org.
Email arts@nashvillescene.com
