Roller Coaster

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!

Comments

[Pam P.]

Our "twinnish-ness" continues... I don't do rollercoasters. EVER. I've always said it's like paying for an anxiety attack, which I really don't understand the appeal of. Luckily, my lovely wife is the "ride parent." Sending love to that cute little baby and his parents...

[Jane]

Jazz hands, Charlie, jazz hands!

And yes, Danny, rollercoasters are dreadful & I can't even imagine the one you're on right now. From a distance, though, I see Charlie & all I see is a baby that can't wait to come home and have mom & dad rock him to sleep every night for the next several years.

[amba]

Wow, Danny, he broke 2 pounds and he LOOKS so mucg bigger, stronger, and more active he's almost unrecognizable as the same baby; he almost looks plump by comparison! He appears to be eating, too . . . or maybe just champing at the bit to go home. Remember what Ruth Anne said about the brain bleeds. Continue to cherish him and pour life into him through your hands and voice. Do you play music for him? All our thoughts and prayers.

[Alan Spector]

It's good to hear that things are improving. Soon your life will be like the roller coaster at Kiddieland.

[Pam G]

Good that Charlie is gaining weight. He looks better in each video and picture. Keep your "seat belt" on and take care!

[Sue Katz]

Just sending thanks for including us, Danny.

[Cleo Gascoyne]

Were you talking about Hades in the Dells? I get an anxiety attack just watching my children go on that ride.....

[Danny]

Yes, that's it, Cleo, at the Mt. Olympus amusement park. Perfect name because that ride was built by the devil!

[Julie Levin Freireich]

I swear to G-d, Charlie waved to the camera at second 33 of the video. You've got a film buff on your hands. And you will watch many movies with him...over and over and over and over....

[Julie R.]

Danny,
Charlie is adorable, and the soundtrack is perfect, for now. I hope he's able to add his own soundtrack soon.

Love,
Julie

[m.yahn]

chase just asked it that was kendall singing to charlie.....and i'm w/ ya danny who needs a roller coaster! yuck!

[sweetsalty kate]

Yeah, all that incessant beeping would be a trial for a zen buddhist monk. I remember.

Two pounds! Atta boy. That's a milestone.

So much love.

[Maria Sosa]

If Charlie could talk right now, I think he would ask for a binky.

There was a freak show at Riverview, wasn't there? I almost started to think that I'd just imagined it. I rode on the Bobs once and that was enough for me.

[Brett Hickman]

I wouldn't wish this stress on anyone. I really do hope all ends well here.

Not to bother you, but you said "pre-digested formula"? How does that work?

[Ellen B.]

Ooooo...rollercoasters! The old wooden one at Pacific Ocean Park in Santa Monica was really scary too. It used to extend out over the water! No thanks. FYI - The last episode of "The Fugitive" with David Janssen was filmed in the closed P.O.P. It looked REALLY scary then!

Charlie looks like he's sooo trying to sing along with Ms. Doris!

[churlita]

I'm with you on hating roller coasters. I hate drama and up and down. I'm definitely a slow and steady girl. I hope everything evens out for you guys and that Charlie keeps gaining weight and chugging along.

[Elaine Soloway]

One day soon (please God), the roller coaster will deliciously reduce its speed, your heart beats will slow, you will unclasp the seat belt, and you will all step confidently off the ride. Babe in your arms as you head for home.

xoxo

[Karen]

Wow, Charlie has plumped up! He is looking good!

Did you see the People article on grown-up Micro-preemies? They all turned out actual size.

Keep those miracles coming!

Sending love!

[Danny]

Thanks, all, for your wonderful comments. About the "pre-digested" formula, it does evoke those images of mama birds chewing up the food and then spitting it into their little ones' mouths! To the best of my understanding, Charlie's developing digestive system can't take the full work of breaking down the proteins in milk or formula so those proteins are "predigested" or hydrolyzed.

[Marilyn Molnar]

Charlie's increase in weight shows ..... poo, poo, poo. You know what that means, Danny.

Love,
Marilyn

[esther fox]

Danny, your movies are amazing and I feel as though I'm there...can't wait to really see you and hold that baby cause I know he's going to make it. Thank you for sharing your story....love, cousin Esther xoxoxo

[Debbie Rose Galo]

danny
been following your blog, and charlie really looks so nice and round! what a beautiful site to see. he even looked like he was waving while doris day was singing to him. i only wish you and kendall many more ups on this roller coaster then downs and that it winds up being being like the choo-choo (charlie) train ride at kiddieland! nice and mellow.
much love
debbie

[Leightongirl]

He really does look bigger. Go Charlie.

xo,

[susie specter]

Wow! His little tiny hands are so gorgeous, fluttering about artfully! I detest roller coasters danny, much prefer the merry- go 'round, my fave being the one in golden gate park! charlie is soooooo cute! may he have many lovely merry go round rides as he grows up! luv, susie

[Julie Brown]

Oh. My. God. Was searching for one of my own blogs, felt like writing, haven't in ages, and thought it was typepad, searched my gmail, came to a comment I left here over a year ago. Was wondering if you blogged on your Mum's birthday this year so.....

You and your family have been through so much the past month. I can't believe this. My thoughts and prayers are with little Charlie and the rest of you.

And to Oliver... Godspeed Little One, Sweet Dreams Little One (Dixie Chicks)

You have many psychic connections, you know. Or perhaps opening up as you do with your writing creates connections with others who are open in some way... In high school (back in 1981, junior year) I was Mrs. Bedwin in our production of "Oliver". I sang to little Oliver in that production.

I'll check back. Blessings to you and yours.

Julie

[Rita]

I am terrified of rollercoasters but as the song says "Life is rollercoaster, just gotta ride it".

Charlie looks bigger and cuter in every new video!

[[email protected]]

checkin out your news Danny
Great vid of charlie singing and dancing his little feet.
fraaaaaaaaank

[V-Grrrl]

My son was a preemie but a giant compared to Charlie and Oliver. Even though his life was never really in danger in the NICU, I remember bending between joy and despair, learning quickly that progress would not come steadily but in a disconcerting series of jumps and setbacks that God willing would lead to gains.

Cool story: I met one of my best friends when our firstborn sons were both in the NICU, both preemies. We discovered we lived in the same neighborhood and had so much in common. The amazing thing? Our boys, kept in adjacent isolettes, grew up to be good friends too. They will both turn 14 in September!