An update related to last week’s piece, A Lapse In Judgement:
If you didn’t read the piece, it was about how I said it was okay for my daughter Em’s nurse to come to the house despite her feeling a bit sick. Apparently, I forgot there’s a global pandemic going on. Many of you were very nice and supportive, which I appreciated.
Well, that evening we received a text from Em’s nurse saying she had tested positive for COVID. This obviously worried us a great deal. We didn’t think our exposure on Wednesday was an issue because she was only at our house for about five minutes and wore a mask the whole time. But she was at our house all day on Monday and likely had already contracted the virus at that point.
So we went for COVID tests the next day. Thankfully, all of our tests came back negative. We tested again on Monday to be sure and once again we were all negative.
Whew.
Em’s nurse is still under the weather, but she seems to be getting a little bit better every day. Her five-year-old son also got sick, but we’re not sure if he has COVID yet.
Since she’s required to quarantine for two weeks from the day she tested positive, we decided to help her out a bit financially since we know money is tight for her. If you would like to help her, as well, please Venmo me with the message “For Em’s nurse” and I’ll pass it along. My Venmo username is @lylemckeany. Thank you!
Please give this a read before we dive into today’s story 👇
For these types of stories about my family, here are a few details beforehand to make them flow better:
Em is my daughter. Her full name is Emily, but we mostly call her Em. She’s just over two-and-a-half-years-old right now. She has severe cerebral palsy, but she’s a happy kid.
Sara is my stepdaughter. She’s eight years older than Em. She’s a pro at Zoom school and she’s currently obsessed with going to the Dollar Tree.
Allison is my wife. She’s the super glue that holds us all together.
All right, take a deep breath. Let’s do this.
“We’re headed back to room seven,” the nurse says.
Em is five-weeks-old and we’re at her first pediatric visit after spending all but three days of June in the neonatal intensive care unit (NICU).
“Sorry it’s so warm in here,” the nurse says as we enter the room. I lay Em down on the familiar doctor’s office table with the roll of noisy paper.
Room seven is tucked in the corner of the clinic at the end of a long hallway. The late afternoon summer sun is relentlessly beaming onto the small single-paned window. The blinds are drawn, but I can still feel the heat radiating from them. The oscillating air conditioning unit affixed to the wall near the ceiling has been reduced to blowing slightly colder than room temperature air—like someone standing there moving their head back and forth while blowing air from their mouth.
Every time the airflow points toward Em, she startles. Her arms spread out to her sides, her eyes open wide, and she looks terrified.
Since leaving the controlled, predictable environment of the NICU a week ago, we’ve noticed she startles easily. Place a plate on the kitchen counter and she flinches. Close a bedroom door and she flinches. A gust of wind blows on her face and she flinches.
Naptime is the hardest. It’s the one time when we get a break during the day, but we have to spend it tip-toeing around the house so we don’t wake her up. It feels like we’re constantly on edge waiting for the other shoe to drop—hopefully not literally.
There are only three pediatricians to choose from in the small town of Sonoma where we live. Before Em was born, we already knew which one we were taking her to. The same one Sara goes to.
But then everything changed.
You develop a special kinship with the person who saves your kid’s life.
Dr. S looks exactly as I remember him. He’s not the type of doctor who wears a lab coat. Instead, he dons a casual salmon-colored polo shirt tucked into khakis and horn-rimmed glasses that frequently drop down his nose and need to be adjusted.
When he enters the room, I resist the urge to immediately give him a hug and play it cool instead. He glances at Allison, then looks at Em as he fidgets with the stethoscope hanging from his neck. I can tell he’s feeling a similar wave of emotion. It’s the first time he’s seen Em since the night he saved her life.
I want to thank him for what he did, but I’m not sure how to do it. It’s not like you can Google it and find a bunch of Top 10 Ways To Thank The Doctor Who Saved Your Kid’s Life blog posts.
He and I spent hours together in the hospital just after Em was born that night. He brought an air of calmness that I needed in those chaotic hours. A few days later, I told Allison I thought he should be Em’s doctor. It felt like the right thing to do. So I called his office and made it official.
We’re here today for a short visit only a week after getting discharged from the hospital because we need to track Em’s weight. She’s 100% tube fed, which means feeding her is boiled down to a simple caloric math equation. We will be coming back weekly to ensure she’s on track and to make any needed adjustments.
Allison is a dietitian, so this is right up her alley. But she’s still mourning the fact that she likely won’t ever be able to breastfeed Em. Breastfeeding was one of the things she was most looking forward to since she cherished the mother-daughter bonding time it gave her with Sara so much. Thankfully, she’s able to pump breastmilk, and—besides the various meds we need to give Em—it’s all Em’s eating at this point.
Dr. S shows us Em’s growth charts on his laptop. Her height, weight, and head circumference percentiles paint the picture of a perfectly healthy baby. Yet we know something is off. It’s too soon to tell how severe her motor movement issues will be due to the lack of blood and oxygen to her brain at birth. We’re optimistic that she will be able to eat more and more by mouth since we practice with a bottle every time we feed her with the feeding pump. The thought is that she will equate the bottle with the feeling of food in her stomach and it will encourage her to eat more by mouth. Maybe it’s a long-shot, but we have to keep trying.
As Dr. S collects his things and stands up to leave the room I finally shake off my nerves.
“I want to thank you for what you did for us and Em. I don’t know what would’ve happened if you weren’t there that night,” I say.
He anxiously adjusts his glasses and says, “Let’s not think about that.” I get what he means. That night is overwhelming to think about. It’s still an open wound that hasn’t quite healed yet. If he lingers in the room much longer, we might all end up in tears.
He leaves the room and the nurse comes in and hands me a piece of paper. It has Your Baby at One Month written across the top. I scan down the page and see bullet-points that read, “Brings hands to face,” and “Lifts head briefly during supervised tummy time”—neither of which Em can do yet.
“I can’t even look at that,” Allison says.
I’m sure the nurse is just doing her job and didn’t mean to hurt our feelings. But it’s tone-deaf for her to give it to us considering what they know about Em’s situation. While Em’s growth charts look normal, her development will be far from it. I’m sure there will be countless times when we will unwittingly play the comparison game—like when visiting family or friends who have young children. For Allison, it will be the frequent reminders of the milestones Sara hit at different ages.
But for now, I wait for the nurse to leave the room, crumple up the paper, and throw it in the trash.
Thank you for spending time with my words. If you’re new here, I hope you’ll subscribe:
One last thing before you go. If you enjoyed this piece, let me know by giving the heart below a tap.
Powerful!
Beautifully written