Bizarro world.

Yesterday, in an attempt to start clearing space for when E eventually comes home, I listed our futon on our local Buy Nothing group. A nice family with two cute but rambunctious boys came to pick it up. Watching the boys interact with each other and get into mischief while their parents loaded up the futon, I smiled and told the mom I have two young boys and felt like I was getting a preview. Immediately, I wished I hadn’t said anything. Naturally, she asked how old my boys are. I briefly hesitated, then told her I have a three year-old and a newborn. When she asked how new, I told her he was almost three weeks old, as feelings of shame began to wash over me. I felt like I was somehow lying. I wasn’t in the mood for anyone’s pity at the moment, but in leaving out the full story I felt like a complete fraud. Because I don’t really feel like I have two boys yet. Emmett doesn’t quite feel like ours yet. And that made me sad, because I do have two boys and I felt guilty for feeling otherwise.

I wonder how long it will take to get used to these types of feelings. I know even once he’s home he’s not going to look like a typical three month-old. He’ll look more like a newborn. I’ve mentioned before that preemies usually go by two ages — actual and adjusted — until they’re around two years old. I recently joined a couple preemie Facebook groups and someone had asked the question a few days ago: “what do you tell strangers when they ask how old your baby is?” Interestingly, a lot of parents responded that they just tell strangers the adjusted age when they don’t feel like fielding the “but he’s so small!” comments or explaining that their baby was born premature.

It’s weird feeling like we don’t really fit in anywhere. We’re new parents, but not dealing with typical new parent stuff. We have a three week-old, but he’s more like a negative-11 week old. We’re bringing home a new baby in August, but I’m not pregnant.

When I was pregnant with Theo, I joined an online “birth month club” to talk with moms who had babies due around the time Theo was. This group eventually spun off into a private Facebook group and some of those moms are among my closest friends today, more than three years later. It’s been great to navigate all those milestones — from feeding, to sleep training, to talking, to tantrums, to preschool — with fellow moms in the trenches. I had hoped to find something similar when I was pregnant with Emmett. But all those August moms are still pregnant and I don’t belong there anymore. My world is suddenly completely different from theirs. But I don’t belong in a world with other babies born in May, either. We’re in this weird alternate universe. The preemie Facebook groups have helped some, but everyone’s story is so different, and they’re all at various stages (some are still in the NICU like us, while some have older children now). And while the success stories are inspiring, the cases where children have gone on to have significant physical or cognitive delays are discouraging. It’s a double-edged sword and I can’t decide whether these groups are more helpful or harmful to me at this stage.

The hospital has its weekly NICU parent support group tonight and I’m planning to attend again. It’s not always very well attended, but I’m hoping I can start to connect with other parents. But again, every story is SO different, even among current NICU parents. Theo has always been so textbook when it comes to milestones and funny toddler quirks, and I’m finding this experience very isolating without the “me too” moments.

As long as he’s okay, I’m okay.

Predictably, we get asked a lot: “how are you doing?” My answer is usually, “we’re okay.” And it’s true. We’re okay. Not great – this isn’t an ideal situation, no matter how you spin it. But I’m acutely aware of how much worse it could be. And that fearful day I was in labor by myself, I definitely pictured all the worst case scenarios. I was mentally prepared to say goodbye.

But as it turns out, Emmett is a NICU rock star. The doctors and nurses all say so. All of his “setbacks” so far have been minor, and par for the course for a baby born before he even reached the third trimester. So while I can’t help but hold my breath with every desat and feel like my heart stops with every brady, it’s completely unreasonable to expect a micro-preemie to regulate his oxygen levels or heart rate on his own. The doctors have every expectation he’ll grow out of this as he gets bigger and stronger, and by the time his original due date rolls around, he should be a fairly normal infant, just three months behind what his actual age says. Most preemies go by two ages, actual and adjusted, until they’re about two years old, by which point they usually “catch up” to their actual age.

That said, I’m aware that things can change on a dime. As I’ve mentioned multiple times, the NICU mantra is two steps forward, one step back. So far we’re more like three or four steps forward for every step back, but I know that may not always be the case. There may even be days where we are taking more steps back than forward and so I’m trying to temper my optimism with a good deal of caution. People keep telling us how strong we are, but I can’t take credit for that — it’s only because Emmett is so strong. If there comes a day where we take some major steps back, I might not be okay. But until then, I keep repeating: as long as he’s okay, I’m okay.

We can handle anything as long as he’s okay.