Today is World Prematurity Day. Each year on Nov. 17, I see lots of stories about former preemies who are now thriving – and very little mention of former preemies who are still facing challenges. Don’t get me wrong; I’m thrilled to see the amazing things these kids go on to do. It’s given me hope in some of my darkest hours. But something is missing from the public face of that conversation, because for some of these kids “thriving” looks different from what most people might imagine. Many face a long hard road to get to “thriving” that actually intensifies once they leave the hospital. Sometimes there are long, long stretches of “thriving” that are actually more like barely treading water. Not every story ends with a tidy “happily ever after.”

I actually wrote much of the content of this post last year, before I was even blogging, but didn’t end up doing anything with it on World Prematurity Day because – guess what – we were back in the hospital. Thriving, but only just barely, and with significant medical intervention.

At some point in L’s first months, when he was still in the NICU and we were still wrapped up in coming to terms with the way our world had been suddenly turned upside down, I went to the grocery store and forgot to take off the “Mom” visitor sticker that was a staple of my wardrobe that summer.

The woman at the register saw it and smiled. She asked if it was from a visit to school. “No,” I said, regretting having left it on and hoping she would leave it at that. But she pressed on. When I told her it was from the NICU, her expression changed to one of pity. “Will he be going home soon?” she asked. No, I told her, we had another surgery scheduled. She grew visibly uncomfortable. “But then after that? He’ll be fine after that?”I couldn’t bring myself to voice the fact that I wasn’t even certain my son would survive his next surgery, let alone tell her when he might go home. So, in the darkest stretch of my life, I put on a mask and returned her smile and nodded, protecting a stranger from the world that had become my reality.

It’s a world no one wants to face — a world in which babies sometimes die and not everything can be fixed. And almost without fail, when people bump up against that world for the first time, they want to know when the happy ending will arrive, because they can’t quite bring themselves to look directly at the possibility that there won’t be one.

I can’t really blame people for trying desperately to find the finish line. NOT KNOWING is a terrifying, soul-sucking place to dwell. It took me a long time to realize that a finish line wasn’t what we were seeking. As surgery turned into surgeries and the weeks turned into months, I kept waiting for that shiny ribbon to come into sight so we could dance through it on our way out the hospital doors.

But when we were finally discharged and my son was home, we found that in many ways things got harder. And so my focus shifted to the day we could finally be rid of his central line. Surely then we would celebrate on the other side of the finish line. But that day came and went (I threw a party! complete with a kiddie pool and a sprinkler that L wouldn’t touch), and soon things started to get really difficult again, and the line and the TPN we had worked so hard to wean him from came back.

Only then, 16 months into our journey, did I realize that there was no finish line, because we had never been in a race. The route we’d suddenly been diverted to was just a path.

As a society, we fixate so much on the ability to triumph over hardship that we inadvertently silence anything that doesn’t fit that narrative. Even now when I tell someone about my son for the first time, they often gravitate toward the same kind of questions — questions designed to propel our story toward that glorious finish. “But he’s okay now?” “Will he outgrow it?” “Will this surgery fix it?” And every year on Nov. 17, I see other parents of preemies and medically complex children offering the same kinds of public reassurance I gave that grocery store clerk.

It’s scary to face the thought that not everything is fixable, but it’s unfair to these children and to their families to gloss over the incredible battles they fight — battles they may continue to fight for the rest of their lives, battles they may never win — just so we can take false comfort in the thought of a storybook ending.

L is an amazing kid. I believe he has a bright future ahead of him. And he will probably never be well, at least not in the traditional sense of the word. Losing most of your guts isn’t exactly something you grow out of. But talking about his health doesn’t require the hushed tones usually reserved for illness and tragedy. Happiness, success, the ability to thrive — these things are not incompatible with continued struggles, and I wish there were more room in our conversations for journeys that don’t end with an unqualified victory. Because sometimes the path is the victory.

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A version of this post originally appeared on The Mighty. 

I thought I might be able to blog a bit as we went along, but it turns out that instead of knocking him out for a few hours at a time, morphine makes L feel FANTASTIC and not nap and stay up until 11:00 giggling and telling me all his secrets, so I haven’t had much downtime in the last week! So here’s a brief summary of what happened during surgery, and I’ll try to come back and fill in more as time and L permit.

The surgery we had planned was supposed to be tapering and lengthening – either Bianchi or STEP, as outlined here.  The exact method was supposed to be an operating room decision based on what his surgeon saw, and once he got a good look, tapering and lengthening turned into tapering with no lengthening, but with the addition of correcting another problem area we had not seen on imaging.

He decided against the lengthening technique for two reasons:

• He found 105cm of small intestine, which is ENOUGH. In theory, if the gut works mostly as it should. Proportionally, it’s about the same percentage of the typical length of a healthy gut for this age as what he had at 3.5 months when he had only 35cm (20%).

• The lengthening technique only works on dilated bowel, and not all of his small bowel was dilated – only about a third of his remaining  (coincidentally, it was the upper third that had previously been intact). That meant that lengthening would not double the length; in reality, it would only take us from 105cm to maybe 120-125cm, which is not likely to make a significant difference.

Since lengthening is riskier and he was happy with the amount of small bowel he found, he just tapered (narrowed) the section that was dilated rather than doing the lengthening procedure.

But he did also open up a stricture (place that’s much narrower than it should be) at the point where small intestine meets large, which had been surgically reconnected in 2013, that was preventing things from flowing through properly and so was causing some backup inside his gut that probably ultimately caused or worsened the dilation, and was almost certainly interfering with normal digestion.

Between those two things he’s hopeful this will make the difference L needs to eventually come off of TPN. We initially felt a little let down, probably irrationally, that we’re going through all this and didn’t actually do the procedure we thought we were doing, and we have concern that this still won’t fix the absorption issues and so still won’t get us off of TPN. But we’re trusting him for now. And we should be looking at this as a less risky procedure that might prevent us from having to do the riskier surgery, with the idea that we may also be able to come back and do a lengthening procedure at some point in the future if necessary.

Recovery from the tapering procedure remains pretty similar to what we expected going in – it’s just less likely to involve additional complications (things that would prolong our stay, prevent the improvements we’re hoping to see in his nutrition, and/or would have resulted in lost bowel in the OR or afterward).

For anyone following along because you may be facing a STEP, Bianchi, or other major intestinal surgery yourselves, stay tuned for a more detailed timeline of the first week post-op. And thank you all, so much, for all of your support through this past week and beyond.

For a day-by-day outline of L’s first two weeks post-op, click here.

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When the time came for L’s second and third big surgeries, Z and I were still in a mental and emotional zone that we needed to shut people out of, for the most part. We requested that our families not come to the hospital; we told people we would update them when we were ready.

While I stand by our decision to do that – it was what we needed at the time – I also understand how difficult that may have been for some of the people who care about L the most. Since then, I have gradually learned to open up, begun to feel the tiniest bit in control of our situation, and learned how freeing it can be to speak openly and honestly about what we’re going through. And, I have learned the value of hearing about the experiences of others in similar situations, and I want to offer that to others out there who may be afraid of what’s ahead for them.

In light of all that, I’m planning to share our experience with this surgery via simple Twitter updates. I’ll try to update on the blog as well, but I don’t know how soon or how often I’ll be able to offer anything longer than 140 characters.

I reserve the right to bail on that plan at any time. If things are rough, my best intentions may go down the metaphorical crapper. I may be literally elbow deep in poo, and sorry guys, but the sanctity of my iPhone screen takes priority over live tweeting (#Germs #ForeverUnclean). But I will do my best, because as much as it was important to me to protect ourselves by shutting out the outside world three years ago, it’s important to me now to begin to let you all in.

If you’re ready to follow along on this journey, follow @ThisGutsyLife on Twitter and join in the conversation with messages, questions or #GutsySurgery stories of your own.

When we were touring the hospital where we were planning to deliver L, they took us by the entrance to the NICU. I listened as they explained all the ways their NICU was amazing, and I gave it a cursory “isn’t it nice that’s here just in case” in my head without really believing we would ever pass through those doors. A few weeks later, that unit became our entire world – and the people within it truly became an extension of our family.

NICU nurses are amazing people. Sure, there are some bad eggs among them, and like any of us they have their off days. But by and large, they are superheros. They choose to spend their lives saving lives, day in and day out, sometimes minute by minute. They devote themselves to the tiniest little smidges of humanity, babies so small even their own parents may be afraid to touch them for fear they’ll break, and commit to making those tiny people grow into healthy, strong, resilient children with bright futures. They face the unimaginable and not only find the strength to keep going, but find the strength to be an immense support for families who need them.

NICU nurses are the kind of people who call to check on their patients on their days off. They are the kind of people who take the time to read a bedtime story to a sleeping 1-week-old preemie, because they know it’s important to the parents who had to leave the unit during a storm. They are the kind of people who understand the significance of being able to take your baby outside for the first time, and who don’t stop until they make a courtyard excursion happen – and turn it into a newborn photo shoot, to boot. They are the kind of people who help navigate the difficult emotional terrain of the first days after a traumatic birth or terrifying diagnosis, and do everything in their power to make sure that scared, overwhelmed, trauma-stricken parents are given the tools to transform into competent, confident care partners. And they are even the kind of truly heroic people who can get sprayed in the face with womb juices while assisting with a delivery and then spend 131 days with the owner of said womb and never once mention it.

I never wanted to meet our NICU nurses. I never imagined I would have to. But our primary nurses spent almost as much time with L in his first 4.5 months as I did. As mothers themselves, they knew perhaps better than we did exactly what we were missing out on, and what we needed in order to normalize our experience as much as possible. From teaching us how to care for our child, to fighting for our child as if he were their own, to fostering the confidence to spread our wings as parents, to celebrating so many of his firsts and triumphs right alongside us – they are our family, and they have been our saving grace many times over.

In an age when we have lost much of our “village” mentality, it was difficult to accept that we needed the help of so many others to care for our child. But I could not have made it through the last 3.5 years without the help of a very mighty village, of which our NICU nurses were the foundation. To our amazing primary nurses and many, many more – thank you. To so many people big and tiny, you make all the difference.

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