Diary of a NICU Dad: Day 34 of 114

As I parse through the private Facebook group posts I wrote while my daughter, Addie, was in the NICU, there’s a lot of weird feelings. I’m reading about things that seem like a distant memory, but that also feel vividly close. It’s a bit unreal, but I’m thankful I took the time to go back to those posts. At the time, it was therapeutic. Now, during NICU Awareness month, it helps me remember what it was like; to not forget those 114 days spent in that little corner of Sinai. As we prepare to celebrate Addie’s 2nd birthday on Saturday and walk for the NICU on Sunday, I’m glad I have these posts to help me remember. This was an entry from day 34:

They told us this would be a roller coaster. Which worries me sometimes. I get what they mean — that it has its ups and downs, twists and turns. Sometimes, it flips you upside down. Sometimes, you’re racing around a curve. Other times, you’re being slowly pulled up a hill. I think what worries me are the ups and downs. On a roller coaster, the ups are always followed by a swift down — an intense drop. You never go up, up, up and stay there. The anticipation you feel when the track catches your car and you start chugging up the hill — shaking as you go — that jerking motion of the wheels caught in the biggest bike chain you’ve ever seen. “Ca-chunk” is probably the only way to describe the sound you hear every few seconds as you slowly approach the top of the hill. You know what’s next. You know that once you hit the top, you’ll feel the wheels release. Down you go. Speeding towards the bottom. Your stomach getting shot into your throat. And if you’re on an old wooden coaster, the white knuckle intensity of hoping that single bar, 3-inches off your lap will hold.

If the metaphor is true, the bigger the up, the longer it takes to reach the top. The bigger the down, the faster you race to the bottom. I think we’re holding our breath. Waiting for the other shoe to drop. It’s hard to completely let go. We’re not in one of those new coasters that belts you in and has the shoulder harness. We’re in one of those old, rickety wooden ones. And we’re afraid to loosen our hands from the bar. We’re pushing down on it with all our might, trying to keep ourselves from flying out of the car.

It’s a weird feeling, not being able to completely enjoy the ups. Not being able to take the good at face value. To always wonder what’s around the corner.

I’m hesitant to say Addie’s had some great days (even though she has). In Steph’s week five update, you can see all the progress she’s made. She’s part of the kg club. She’s in clothes. She’s regulating her temp better. She’s on the C-PAP with limited oxygen requirements. She’s nice and pink. Back on milk feeds. All wonderful things. All incredible progress. But we’re both unable to just let go. Let go and be completely in the moment. When we’re in our NICU corner, reading to our girl, we forget everything else for awhile. We’re on that hill, ca-chunking along, but too enamored by the view around us at that height to be concerned about what lies ahead. But the minute we leave her, we’re right back to white-knuckling it.

And as time passes, I thought it would get easier — this NICU thing. This preemie adventure. Not really. It’s still not easy to leave her bedside. To go back home to our “normal” life. There’s a piece that gets left behind, every day. Steph has been struggling particularly hard lately. I think, with the house guests gone, she’s got more time to focus on the fact that she’s not with her daughter. That she’s home and Addie’s 30 miles away. I have work as a distraction. For eight or more hours a day, I’m forced to focus my attention on something completely unrelated to Addie. Steph doesn’t have that luxury (?). She’s home — between pumping cycles — trying to keep busy. Trying to keep her mind off the fact that Addie’s not here.

Maybe it really hit home today because of an article posted in the group. Or maybe it’s because I’ve watched her cry uncontrollably the last few days, many times. Crying because she doesn’t feel like a good mother. Because she feels guilty for not being there. It’s hard to see my wife like this. And hard to see my daughter like that. Even though I know, deep inside, that relatively speaking things are good. There’s so many more terrible things that could be happening. Things that we see in the NICU every day. Things that we read on the internet every day. So many horror stories. So many complications. So much that can go wrong, that for us, is not.

I feel almost guilty for being upset, knowing there are others who are having a much worse journey through this NICU thing. This preemie adventure.

This weekend though, I realized that hardship is all relative. We were running errands the other day and were stopped by an unfamiliar woman, asking if she knew us. But as we looked at each other, confused, she asked if we had a child in the NICU. She said she was there, too. Her son was born at 33 weeks and spent four days there. As I looked at her more, I remembered her. Not sure how, because days begin to run together, and if you’re not a nurse or a constant in that room, it’s hard for me to notice. But they were stationed by the main door — where they put babies that won’t be there long.One foot out the door. Right next to the exit. I remember her there a couple of times, in a hospital gown. And then nothing. The isolette was empty. They’d been discharged. Her and her giant baby.

But as we talked, she said they were scared. So worried. They hoped their son wouldn’t have to be there long. I realized if we had been in her shoes, we would’ve been petrified, too. We would’ve been beside ourselves. And then I didn’t feel so bad about feeling bad about our situation. If everything else goes according to plan, from here on out, it’s still hard for us. And it’s OK to stop and say to yourself that this sucks. That it’s scary. That you wish it was over. Even though there are others who are going through much worse. But I guess it helps me not to forget that it could be worse. One thing this woman said at the end of our conversation when we told her how much longer Addie was expected to be there resonated with me most: “I can’t imagine having him there that long.” Even in what might have been the scariest situation for her, she realized she couldn’t fathom it being worse. In the moment, I’m sure she didn’t think it could be worse. Now she knows it can, and she can’t imagine it.

We can’t imagine it being worse than this right now. But we know it can be. We hear the conversations that doctors are having with other parents (you try to block it out, but it’s hard not to hear). We hear the constant alarms. We see the transports to higher-level NICUs parked out front. We see babies here one day, gone the next…and not because they’re discharged. I know deep inside it can be worse. And that we’ll get through this.

But we’re still going to hold on tight as we ca-chunk up the hill. This may not be the highest or fastest coaster we could ride, but it’s the one we’re on now. And it’s the one we have to ride out until we can feel that relief you get when the car pulls back into the station, screeches to a halt, and the lap bar rises.

A version of this post appeared on She Got Guts.

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