I’ve always hated roller coasters. When I was little I was too young to go on the Bobs at Riverview, the legendary amusement park in Chicago (complete with an actual “freak show” that included a bearded lady, a hermaphrodite, and a man with lizard skin). The park was a Chicago institution until it was torn down in 1967 for some stupid strip malls. During our many visits I complained bitterly that I didn’t meet the height requirement for the Bobs, an all-wooden roller coaster built in 1924, but the truth is I was secretly relieved. I can still hear the sounds of the cars racing across the wooden rails and the blood-curdling screams coming from every single rider as they plummeted through the death-defying descents.
Two summers ago, Leah, Kendall, and I were in Wisconsin with my sister and her family and my brother-in-law Jeff and nephew Spencer went on a retro wooden roller coaster that seemed similar to the Bobs. Coming off the ride shaken but exhilarated, Jeff and Spencer all but double-dared Sue and I to take a spin. Foolishly, we agreed, regretting our decision immediately but feeling too proud to turn back from the long line. How bad could it be? Oy. One of the drops was so steep that we actually had to dip below ground under the parking lot and come up the other side. It was a short ride, as roller coasters go, but our screams were accompanied by real tears and by the time we got off our kishkes had taken a trip throughout our digestive tracts. Being the aging hypochondriacs that we are, Sue and I complained for the rest of the day of permanent inner ear damage, loosened brain stems, and catastrophic impairment to our central nervous systems. I really can’t blame Jeff or Spencer—we were the fools who took up the challenge as if they were our 8th grade classmates daring us to smoke a ciggy butt in the back of the school.
From the moment we entered the Neonatal Intensive Care Unit (NICU) at Cedars, we were warned that it would be a “roller coaster ride.” They said it so many times at the beginning that I wanted to scream, “Shut up already! We GET it!” But of course, we didn’t get it back then, not really. I can see why they feel the need to stress this to new parents. I already wrote about the false sense of euphoria that sets in at the beginning of the NICU experience, especially when you have the awful tragedy, as we did one month ago today, of losing one of our twins. While our sweet boy Oliver died in our arms after only 12 hours on the planet, Charlie lounged in his incubator, seemingly content in his artificial womb, all of his systems being helped by tubes, lines, and an assortment of drugs. He was perfectly formed, a little Benjamin Button-like at the beginning with his skin, muscles, and organs that weren’t quite ready for prime time, but he just needed a few months to grow, grow, grow.
As the weeks wore on, we came to know the whiplash-inducing twists and turns of that damned roller coaster and how it will be part of our lives for months to come. Every baby in the NICU is critical, even when they are stable (“critically stable” is the annoying term they use), or else they wouldn’t be there. There is an endless array of things that can go wrong and often do, but there is also a team of expert professionals addressing every crisis, beep, and alarm.
Don’t pay too much attention to my current skittishness, Charlie is doing okay. He’s still tolerating the pre-digested formula they’re giving him, he’s slowly gaining weight (2 lbs. 1 oz.—woo-hoo!), and most of his organs are developing nicely. We had a meeting with the doctor and the neurologist this morning and the brain bleeds remain his most serious issue. The Level IV bleed has expanded into the surrounding tissue a bit and again they spoke of the range of possible disabilities that he could be facing later. But there’s no way to know for sure what’s happening yet, it’s just too soon. In some ways we may not know the effects of the bleeds for months or even years after we leave the NICU. The doctor also talked about the likelihood of setbacks interspersed with progress, such as infections or the need for additional surgeries. As we know, it’s a long road and...well…a roller coaster. Don’t you just HATE fucking roller coasters?
I guess my new anti-anxiety meds haven’t fully kicked in yet because Charlie’s recent spate of de-satting over the past few days has made me as jittery as a meth addict. Our poor boy has so many tubes and lines and is constantly being prodded and poked—who wouldn’t de-sat from all that discomfort? Still, most of the time when he’s sleeping or even peering at us through half-open eyes, he looks like the sweetest, calmest baby in the world. How odd that he’s a month old today and we’ve never heard his voice. God, I can’t wait. To think of how worried I was a few months ago about how I could cope with a screaming infant again. Let it rip, Chuck!