On World Prematurity Day, here’s what “thriving” really means

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.

amy-thompson-3-001L 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

Red, Red Wine: the story of a boy and his Neil

Last year for Halloween L dressed up as Neil Diamond. neil-1

This is the story of why, in the year 2015, in a classic-rock-and-Black-Crowes-loving household with a fire truck-obsessed child, there was absolutely, without question, no better costume for my two-and-a-half-year-old son.

Once upon a time when L was about nine months old, I bravely took it upon myself to drive the four hours to my hometown with L, alone. “Everything’s gonna be fine!” I thought to myself. “I’ll leave at bedtime and he’ll sleep the whole way there.” And that is indeed what happened – at first.

Two hours into our journey, just as I was congratulating myself on my prowess as a capable, independent mama and thanking the Lord for the night time – L woke up. With a fury.

I tried to soothe him. I offered a bottle. I offered a pouch. I pulled over at a rest stop and bounced around a few empty parking spots with L and his TPN backpack. He. did. not. care. This was not his crib and he did not want to be strapped back into the car and he was ANGRY AND EVERYONE MUST KNOW IT. I finally gave up, bundled us back into the car, gritted my teeth, and turned up the music, resigned to another two hours of car seat rage. He screamed through Robert Plant. He screamed through John Lennon. He screamed through Aretha. He screamed through Chris Robinson and Pete Yorn and Eddie Vedder and Dave Grohl. And then – NEIL came on.

In the still of the night, as the first bars of Neil Diamond’s “Red, Red Wine” filled the car, a miracle occurred. L grew quiet.

The glorious calm lasted only until the song ended. Skeptical but hopeful, I hit the back button. “Red, red wine….Go to my head….

Silence. Two minutes and 42 seconds of delicious silence.

When he began to scream again, I put the song on repeat and held my breath – and lo and behold, he immediately quieted. Amazed and confused, I listened to that beautiful noise for the remaining 45 minutes of our drive.

Two days later, it was time to embark on the long way home. I was certain the wondrous musical salvation I had experienced on the drive there had been a fluke and was preparing for a long, rage-filled ride. Again we left at bedtime; again L made it only about halfway home before waking up; and again – FURY.

I did not hold out much hope, but I resolutely turned up the volume and searched for Neil. “Red, red wine….Go to my head….Make me forget that I….Still need her so….


From that point on, I was a believer. Going for a long drive? Neil Diamond’s “Red, Red Wine.” L won’t calm down at bedtime? Neil Diamond’s “Red, Red Wine.” Holiday travel? We listened to Neil Diamond’s “Red, Red Wine” on repeat for more than 20 hours in one three-week stretch of December 2014.

Red, red wine
Go to my head
Make me forget that I
Hate my car seat

Red, red wine
It’s up to you
All mom can do, she’s done
But yelling won’t go
No, yelling won’t go.

I’d have sworn that with time
You’d get used to your car seat
I was wrong, and I find
Just one thing makes you not scream

Red, red wine….

It was consistent and effective. If L was upset, Neil Diamond’s “Red, Red Wine” quieted him almost immediately. Other Neil songs would not do. Other versions of “Red, Red Wine” would not do. L knew what he liked, and what he liked was Neil Diamond’s “Red, Red Wine.”

From January 2015 through the summer, we didn’t drive much. After a while, our Neil addiction dwindled. Then, at a little over two years old, L started going to school and we started spending more time in the car. Z and I thought our commute offered a great opportunity to provide a little musical education for L. And one September morn, I wondered….we hadn’t played this song in months. At nearly 2.5 years old – would he remember?

I put it on. He grew still, listening. “….It’s tearing apart….My blue, blue heart.” /closing bars.


Hello again, “Red, Red Wine.”

Every day on the way to school: Neil Diamond’s “Red, Red Wine.” It came on the radio once in his classroom and when it was over and they couldn’t play it again, he sobbed. When I picked him up from school, I was the one getting side-eyes from the other parents for carrying the toddler who was yelling, “Mama! Car! Red wine! RED WINE CAR!” all the way down the hall and out into the parking lot.

imageWhen he entered school in August our feeding therapist was pushing for a speech evaluation because he didn’t have a big enough vocabulary. By the end of the winter, he could sing every word. And we let the little boy sing.

Forget lovies and soothies and mama snuggles – all he really needs is you, Neil Diamond.

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Gutsy Surgery: A Timeline

For anyone who is interested, here is a breakdown of the first two weeks after intestinal tapering (and yes, there is poop talk. With descriptions. I mean, you are reading a blog about guts, after all).

Even though the surgeon ended up only tapering and opening up a stricture rather than tapering and lengthening, we were told this would be fairly similar to a STEP or Bianchi recovery since he still had a long staple line in his gut, but with less risk of complication that could delay progress. Given the difficulties we endured in his first year or so after his first three big surgeries, we were prepared for all of the worst scenarios, but L hit the best case scenario on basically every mark and came in right at what I had estimated would be our shortest possible stay (10 days). Here’s an overview of what it looked like:

Sunday, T-1 day: Admitted to the hospital for a bowel prep

  • We were told to be there at 11am, but since L didn’t need an IV or an NG tube placed we just hung out in the playroom until about 5pm.
  • We followed standard procedure for a bowel prep – NuLytely at 462ml/hour – and we were shocked that it didn’t rush through him. I was incredibly skeptical, but he actually required an extra hour of the bowel prep solution (run as a continuous feed through his g-tube) before he produced an substantial BMs. In all, he pooped a total of six times in about 15 hours.
  • On clear fluids only until midnight, when he became NPO. To our surprise, he did not get upset about that.

Monday: Surgery

  • Surgery took about three hours, most of which was working through adhesions from previous surgeries (but he didn’t end up doing the lengthening procedure which would have taken longer, just did tapering instead).
  • By 10am when we were in pre-op, L knew something was up and was getting upset about not eating/drinking.
  • Epidural went in at the beginning of surgery, after he was out.
  • At 3.5 months old he had 35cm of small intestine; now at almost 3.5 years old, that has grown to 105cm.
  • Tapering and lengthening turned into tapering and opening up a stricture, as detailed here.
  • Post-op: Slept for most of the next 24 hours. G-tube draining to gravity; 24 hours TPN; NPO. Asked for a drink once, but was not upset when I told him no.
  • High fever (103F) and elevated heart rate, which is apparently a normal response to gut bacteria that inevitably get out into the abdominal cavity.
  • Some pain control issues overnight, but doses of narcotics came quickly when we needed them.

Tuesday, post-op Day 1: Epidural and narcotics for pain; began stirring midday; out of bed in the afternoon; catheter removed; g-tube draining to gravity; NPO.

  • 24 hours out: first real smile, in response to tech’s Lightning McQueen lanyard. Still speaking less than usual, and mostly in whispers.
  • Fever down to 99-100.
  • Pre-op we were told he would need to stay in bed while he had the epidural, but they actually wanted us to get him out of bed at least three times a day. Tuesday afternoon he sat up on the couch for a while to play – I carried him over very gently and with full support, and he leaned against me, not sitting up on his own. He still had feeling and movement in his legs, just too sore and unstable to move much.
  • Asked for a snack and a drink, but did not get upset when told no. This is a child who has had RAGE at previous stretches of being NPO for any significant length of time.

wagonrideWednesday, post-op Day 2: more of the same.

  • Fever gone.
  • Wagon ride! And up and playing on the couch again. Much more personality back today – even some major giggles.
  • Still requiring full support to move (not using abdominal muscles at all) – and afraid of being moved, even if it didn’t end up hurting.
  • Without the catheter, he is not peeing without great concentration, and then only in small amounts. Increased fluids, but it seemed to be an epidural issue because he returned to normal urination as soon as the epidural was gone (Thursday night).

Thursday, post-op Day 3: more of the same.

  • Good day in terms of pain management. More willing to move.
  • Right at bedtime on Thursday, his epidural began occluding. Pain team could not salvage it, and we spent Thursday night without it and pulled it first thing in the morning on Friday. (Lasted around 80 hours.) Some pain control issues overnight.
  • More than 600ml out through the g-tube (that’s a lot considering nothing was going in); still dark green and opaque.

Friday, post-op Day 4: Upper GI follow-through; g-tube capped during imaging but returned to gravity afterward; still NPO.

  • Imaging took 5 hours; with the epidural gone, we were allowed to go to the play room in between. No leaks or other issues visible in imaging.
  • First post-op steps (in the playroom, of course!)
  • Did just fine with g-tube capped, but poured out several hundred mls immediately as soon as we let it drain again. Still dark green, and too much to leave capped; returned to draining.

Saturday, post-op Day 5: Approved for clears; drank a total of 1oz

  • Made it through the night without epidural or narcotics, but needed morphine before bed and upon wakeup.
  • At bedtime and at wakeup – panicking from the pain.
  • POOP! Five times in about three hours in the late morning, dark and loose, then no more for the rest of the day.
  • Very little drained through the tube overnight; some out in the morning on Saturday, but it was less volume and also less green, and after seeing poop they were content to cap it off and see how he did.
  • Allowed sips of clears, but did not take in much.

Sunday, post-op Day 6: Clears only; drank 9oz; tolerated.

  • Significant discomfort, but we suspect it was from holding in poops – he was afraid to go because he was afraid it would hurt.
  • 9oz total clear fluids; no vomiting.
  • Did not poop all day, until late evening when he squeezed out a tiny bit because he really really really wanted that damned Paw Patrol train set we’d been keeping as an ace up our sleeves.
  • Paw Patrol train set convinced him to play on all fours and reach across with apparently no discomfort.
  • Surgical resident approved crackers just before bedtime; L ate two. Apparently resident did not consult with GI because the next morning we were on soft foods only (no crunchy carbs, much to our pretzel-lover’s chagrin).

Monday, post-op Day 7: Soft foods; pain under control.

  • Approved for full diet of soft foods. Ate a few bites banana, peaches, cheese.
  • FORMED POOP. Formed. Solid. Pieces. Let’s take a moment to marvel at those little pale, smushy, miraculous tootsie rolls. 
  • Pain under control as long as he has fun distractions. Once he was tired and the play room was closed for the day, back to sad and uncomfortable. Until he remembers the Paw Patrol train.

Tuesday, post-op Day 8: Home.

  • Discharged on 20 hours TPN.
  • Our stay was a total of 10 days.

Wednesday, post-op Day 9: Appetite!

  • Significant afternoon discomfort – but may have been hunger pains?!
  • Very few bites at breakfast and lunch, then dinner: ⅓ mac and cheese, whole peach cup, slice of deli ham. Sips of liquid throughout the day.
  • 2 poops

Thursday, post-op Day 10: More of the same; still on 20hrs TPN.

  • Still hungry, not at all thirsty
  • 2 poops. Formed poops. We’re talking Play-Doh poops, guys!
  • Only discomfort is when tired; easily distracted by fun toys.

Friday, post-op Day 11: GI appointment. Cut to 12 hours TPN (to begin Saturday night). Still on soft diet.

  • Thrilled with weight gain and amount of intake he’s tolerating; cut TPN to 12 hours – he was on 10 hours before surgery.
  • Restricted to a soft diet for at least another week.

Saturday, post-op Day 12: More of the same; last day of 20 hours TPN.

  • AM: Best poop we’ve ever seen. Who wants to see a picture?! Because I definitely took a picture of it.  
  • Pain under control with no medication at all during the day; single dose before bed Friday and Saturday.
  • Drank almost nothing, because still running TPN 20 hours/day.

Sunday, post-op Day 13: First day of 12 hours TPN; hungry and thirsty; tolerating increased quantities; first day of no pain meds.

  • Breakfast: 2 cheese sticks, whole slice deli ham, ⅓ banana!
  • Drank around 16oz of Drip Drop and milk; tolerated it brilliantly.
  • Only 1 poop, right at wakeup.
  • Confident enough to go down the slide at the park by himself for the first time post-op.
  • Did not take a dose of pain meds before bed, and had discomfort throughout the night – possibly also related to going all day and all night without pooping.
  • Still not a single vomit so far.

bandaidsIn the days after surgery, L put Band-Aids on all of his cars and trucks and on each Paw Patrol pup. Yesterday, he took them off, because “they’re feeling all better now.” I think that is not insignificant.

We are keeping him home this week to make sure he continues to tolerate increased fluids, because we’ve really only just started that, and he is still on soft foods at least through this week (back to GI on Halloween), but since he’s down to 12 hours on TPN and seems to be flying through this recovery, he will most likely be ready to go back to preschool next week – just three weeks out from surgery. He is excited to see his friends!

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Gutsy Surgery: Post-Op Recap

image.jpegI 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.

L goes back to the ballpark

When my post about the Cardinals usher helping us find milk went viral, the Cardinals and the local news and various other people tried to contact the usher, but no one could get in touch with him in time to include him in the coverage that was popping up right and left. I was bummed that it seemed we had missed the opportunity to properly recognize him despite all the coverage, and I was also worried he didn’t want the attentionimage I had inadvertently brought him.

This past Saturday the Cardinals brought us back to the ballpark for an interview, and we were finally able to reconnect with the kind soul at the heart of my little story. It turns out he had been out of town and off the grid for the weekend, and had no idea he had become so famous until he saw the abnormally large number of notifications on his phone when he returned!

The usher – his name is Scott – was there in section 267 to meet us, with a goody bag for L stocked with a baseball, a Fredbird pennant, a Cardinals Build-A-Bear and plush Clydesdale, stickers, and a shirt to grow into – and, of course, a bottle imageof milk (although rest assured, world, we came fully prepared this time and will probably never go anywhere without milk ever again!).

Scott and his wife proved to be just about the nicest people I’ve ever met, and we were thrilled to be able to thank them in person and offer an actual thank you card complete with original fire truck illustration by L (because a fire truck expresses the very highest form of gratitude, obviously).

We did spend most of the game walking up and down all the stairs and ramps in the stadium searching for Fredbird (whom we found not one, not two, but three times, because once just wasn’t enough), but we also managed to see all the runs that wimageere scored and actually stayed for the entire game (innings 8 and 9 brought to you by Disney Toys Review on YouTube. I have no regrets).

Big thanks to Scott and to the Cardinals, and even more so because this outing couldn’t have come at a better time. We have taken it upon ourselves to have Epic Weekends leading up to L’s big surgery next week; Saturday was baseball and a birthday party, and Sunday centered around football, the fire truck playground, and filling the bathroom sink with shaving cream (L’s request). On the docket for next week: breakfast at The Restaurant with the Car Playground, a trip to the pumpkin patch, and, most fun of all, a bowel prep (who’s jealous?).

Stay tuned for our story in Cardinals Insider in a week or two!

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Today is our Coming-Home Day

Today L is 3 years and 131 days old.

I suppose this should be a Throwback Thursday post, but since the days of the week were not serendipitous, how about let’s call it “Feels Friday.”

imageOn September 30, 2013, after watching dozens of new mothers departing the hospital blissfully unaware (or so it seemed to me at the time) of exactly how lucky they were with their discharge papers and their babies who didn’t even need to be plugged in to the wall, Z and the NICU staff loaded me up in a wheelchair with my 4.5-month-old son and a bouquet of “It’s a boy!” balloons and made a small spectacle from the NICU to the hospital doors while passers-by looked on and wondered how on earth I managed to be in such good shape after pushing out that  ridiculously large and strangely alert newborn.

Three years ago today L came home at last, and we finally turned off the porch light that had been burning for 131 nights awaiting the day our entire family would finally be home.

Not to be outdone by himself, L decided to celebrate the one-year anniversary of his going home day by going home yet again. We had planned to find a fun place for a 1-year-and-131-day old boy to have a celebratory dinner, but instead we were wrapping up a nearly 2-week inpatient stay that began with an emergency blood transfusion, ran the gamut of stress, frustration, denial, and mama-rage, ended with a new line placement and TPN, and was capped off by an extra three days inpatient while we waited for the ****wads at our insurance company to get their act together so we could be discharged with services from a home health pharmacy.

Last year? I honestly don’t remember what we did last year. To a certain extent every happening and milestone are etched into my brain, but his first going-home day actually at home is not one of them, and given the circumstances of the year before I don’t think that’s necessarily a bad thing.

Tonight we are going to The Restaurant with the Car Playground at L’s request, and spending our after-bedtime hours working on another kind of “coming home” by cleaning and moving furniture into the main floor of our new home, where we have been living mostly in the basement for the last two months. It’s still a work in progress, but I think it’s safe to say that’s a pretty good way to describe most things in our lives.

And next year? Who knows. So many, many possibilities lie between now and then. For now, we are taking things one day at a time.

Happy Coming Home day, baby boy.


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What to expect when you’re expecting surgery

I set out to write an honest post about what it’s like to be drawing close to a big surgery that could change our lives dramatically without knowing whether that change will be dramatically good or dramatically bad. I think that the best picture I can give of what that feels like is to say that right now, I’m not at a point where I can dive into all that.

Let’s just say there are feels. Lots of feels. So many that I kind of need to ignore the feels and stick with facts for now.

So here are some facts and tips from our first three experiences with big surgeries, along with some additions from other minor surgeries we’ve had along the way. L was only 3.5 months old at his last big surgery, so my facts and tips regarding those kinds of procedures are focused on tiny bodies and very early stages of development, and I don’t have advice for preparing older children to understand what’s about to happen – although I would love to hear yours, if you have some.

Here’s what I do have:

Ask questions. Early and often, and don’t stop until you’re satisfied with the answers. Write down a list of questions and bring it to appointments with you to make sure you get them all answered. Ask them to explain again if you don’t understand. Ask questions even if you don’t really know what you need to ask.

A good place to start may be to ask what kinds of things you should be asking, especially if you can connect with a knowledgeable and objective third party – a parent who’s gone through the same procedure; a specialist or surgeon who is familiar with the diagnosis or procedure but is not involved in your child’s care (i.e. before we met with the surgeon who’s going to be operating on L next month, I had emailed a surgeon at Boston Children’s and had inquired with specialists at two other hospitals in other states via friends, just asking what we should ask the surgeon and if they had any advice to help us make our decision).

And at L’s second surgery, our surgeon had expressed concern about keeping L under anesthesia for any longer than he had to after the two-hour mark, but we were expecting a minimum of four hours in the OR; in our pre-op meeting with the team, I simply turned to the anesthesiologist and said, “Make me feel better about this.” And you know what? She did.

img_3911You can probably accompany your child further than you think. If they don’t offer, ask. For L’s last line placement, I scrubbed up and carried him right into the operating table, then stayed with him and held his hand and talked to him while they put the gas mask on to start sedation. Plus then you get a cool paper outfit and neat hat and stuff that you’ll definitely want to keep for the scrapbook.

Do not do this if you’re going to freak the flip out once you get in there. Seeing the OR could be scary. Your child might struggle with being handed over, or laid on a table, or with getting the mask, or a number of other things. It’s a horrible feeling to watch your child’s eyes glaze over and drift away. If any of these things are going to make you lose it, don’t go in. You’re not taking the easy way out; you’re doing what’s best for your child. The surgical team needs to be focused on taking care of your kid, not on calming you down.

Anesthesia is scary – but in most cases, it’s maybe less scary than it seems. The anesthesiologist that I mentioned told me that there were people in the OR whose sole job was to monitor vitals and make sure that if there were any signs of adverse reactions, the surgeon knew to wrap it up immediately. She also told me that while extended anesthesia in babies and young children has been linked with developmental disorders and delays, it’s likely that correlation does not equal causation because children who undergo extensive anesthesia have a reason for needing multiple and/or lengthy surgeries, and those reasons are more likely to be the cause of those correlations than the anesthesia itself (i.e. L had gross motor delays, but he had his abdomen cut wide open three times and spent a good deal of his first few months flat on his back, for pete’s sake).

Ask for updates. Most hospitals probably have some kind of update system in place – we could see on a screen what phase of the procedure they were in based on a color coding system, for example. But ask what else they might be able to do. During L’s big surgeries, we had a nurse call my cell phone right from the ER to give updates on how things were progressing. This not only was a huge reassurance, but it also meant we didn’t have to sit in the heavy hush of the waiting room for 6+ hours. Which brings me to my next point:

Don’t just sit in the waiting room the whole time. Get up. Walk around. Eat something. Go outside. Bring a laptop and find somewhere comfy to watch something stupid on netflix. Maybe even laugh, if you can. You’re allowed to feel things besides fear and anxiety and dread.

Be prepared for post-op. Ask what to expect, and be prepared for it to not go 100% smoothly. This will vary greatly based on the type of procedure. If you’re expecting invasive neonatal or infant surgery here are some things I was completely and totally unprepared for:

  • Swelling. Preemies and infants are tiny. Surgeries involve an awful lot of retained fluids, and in an 8-lb person there’s not a lot of space for all that fluid to go. They cut open L’s belly, but the swelling extended all the way up to his face and right down to the tips of his toes. L was almost unrecognizable for a while after his big surgeries. That was hard, and made harder by how unprepared we were to see him like that.
  • Intubation. I knew they would intubate him. I was not prepared for the way it felt to see my child crying silently around a vent tube.
  • Pain management. It took a little while to find exactly the right combination of meds to keep him comfortable. And in the second week, when I was asked to weigh in on giving him another dose of narcotics or not, I was not prepared for the way it felt to see him slowly glaze over and drift away again and know that I had made that choice.
  • Unexpected outcomes. L’s jejunostomy was a difficult one, to say the least, and we thought it would be gone after his second surgery. The surgery was more complicated than we’d expected, and he kept that ostomy for another 6 weeks. It had not occurred to us that they wouldn’t be able to take down the ostomy at the second surgery, and so we felt a little defeated even though the news from the surgery was generally very good. If you’re up to it, hash out every possible outcome and complication with your surgeon before surgery so you can go into post-op as informed and prepared as possible.
  • Backward steps. Recovery = progress = moving forward. But sometimes, it’s not a straight line. Sometimes your kid isn’t ready for what you’d like them to be ready for. Sometimes there isn’t a clear finish line. Sometimes steps back are necessary for progress.

Accept help. People will probably offer. You will probably be inclined to turn them down. If you need something, don’t be afraid to say yes, and specify what you need.

Be gentle with yourself. Whatever you’re feeling? It’s okay. You might not react the way you expect. You and your partner might react differently. That’s okay too. Z tended to get emotional at all the appropriate times, like when we found out good news and bad news, and I tended to sit stone-faced through post-op debriefs feeling like an a**hole because I wasn’t properly emotional, but then cry at all the inappropriate times, like in the checkout line at the grocery store or driving 70 mph down the highway (that last one might be less okay).

If you find yourself needing more support, whether from family and friends or medical staff or a therapist – seek it. You’ve been through a lot, and you’ve spent most of that time taking care of someone else. Remember to take care of yourself too.

I’ve done this a few times, but I don’t claim to be an expert. This is the kind of thing that’s never quite the same, and always hard. If you have more tips or advice, please leave a comment!

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It’s National Neonatal Nurses Day

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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Adventures of Frankentestine: The Next STEP

A while back I mentioned L was having some imaging done, and then I casually dropped the fact that we may be facing another big surgery into a nice little feel-good story that turned out to be a not-so-subtle mention since everyone and their mother ended up reading it! So, now that we have some concrete plans on the table, I figured it was time to circle back and dig in to what exactly that means.

L’s gut is dilated. It’s far bigger around than it should be, and it has gotten significantly worse over the last couple years. That means that instead of pushing its contents along like you would expect, when it squeezes the stuff in the middle just kind of sits there, or some of it might actually go backward instead of forward, and that also allows normal gut bacteria to build up into not-at-all-normal amounts. Because of all this his gut (which is already at a disadvantage because such a big part of it is missing) definitely doesn’t digest the way it should.

We’ve tried a few things to push his nutrition in the right direction, and we haven’t seen the results we needed. So he’s back on TPN, and we’ve been talking about surgery to correct the dilation, and now that surgery is scheduled for four weeks from today.

There are two options: STEP and Bianchi. Both of them narrow the dilated gut to a more typical circumference, and at the same time increase the length of the gut, with the goal of dramatically improving bowel function.

The Serial Transverse Enteroplasty (STEP) procedure was pioneered at Boston Children’s Hospital, and as they helpfully explain, “the STEP procedure relies on the simple anatomic principle that the blood supply to the small bowel travels from the mesentery and traverses the bowel perpendicular to its long axis. In the STEP operation, special devices are used to simultaneously cut and staple the bowel in a direction parallel to this plane.” Got that? It’s simple anatomic principles.

Basically what that means is that in the much-wider-than-it-should-be tube of the dilated small intestine, they make a series of small cuts along each side that, when sealed with staples, make a narrower zig-zag tube out of the formerly wide straight tube, like so:


The Bianchi Procedure is a slightly older procedure that essentially takes the dilated tube of the bowel and cuts it lengthwise (if you can dig back to elementary school art class, that would be hot-dog style) and makes two narrower tubes out of the one wider tube, then sews them together end to end so you wind up with about half the width and twice the length. For your viewing pleasure:


The STEP seems to be increasingly popular, but for a number of reasons that we are completely in agreement with, our surgeon prefers the Bianchi for L if possible. It doesn’t lend itself to punny blog titles quite as well, but the Bianchi does have a slightly lower risk of complications, and if it’s not successful, it’s much easier to do a follow-up STEP after a Bianchi than to do a Bianchi after a STEP. But either could be tremendously successful for us, and that will ultimately be a game-time decision in the OR.

The neat thing about these surgeries is that, if all goes well, he will not only end up with a much narrower and more efficiently-functioning gut, but also with as much as (nearly) double the length in his small intestine.

The less neat thing about these surgeries is that there is a 5-10% chance of a number of complications that adds up to about a 20-25% chance of things not going 100% smoothly. This is not comprehensive, but potential complications include:

  • Because blood flow has been rerouted in his gut after all the previous surgeries, some blood flow could be severed which would result in a lost section or sections of bowel.
    • Although unlikely, it’s possible that this could result in the return of our old 2013 foe, The Ostomy.
  • Because of all the cutting and stapling and sewing and attaching, there’s risk of a number of different versions of bowel leakage (like fistulas and abscesses). If these occur and don’t resolve themselves, they could require further surgery and result in more lost bowel.

The bright side to both of these possibilities (although what’s not bright about abscesses and ostomies, amiright?) is that even if he ends up losing more gut, it should still work better. In theory, we’re working from a post-op ideal outcome of double the gut, so losing half of that would put us at the same amount of length but much narrower, and so much more functional. In theory.

The other fairly obvious complication, if you can call an expected outcome a complication, is that his gut will have to re-learn some things. We’ll be essentially starting over with feeds, moving to 100% TPN for the week or so after surgery and then slowly adding in oral and enteral (tube) feeds. The goal will be to gradually shift the ratio of calories he’s receiving from TPN to oral/enteral, and eventually come off of TPN altogether.

He may bounce back relatively quickly, but it could also be a very slow process. This is a wait and see kind of thing. Hello again, NOT KNOWING.

It’s scary. Recovery will probably be frustrating. It’s possible this will leave us in a worse spot than we are in now, and it’s difficult to choose something that has a chance of a worse outcome, especially since L feels great since he’s been back on TPN. But the reality is that if we do nothing, he will continue to have immense nutritional struggles and difficulty growing, and sooner or later he would wind up with liver damage from long-term TPN and then might need small bowel transplant or liver transplant or both, neither of which are likely to be as successful as the STEP or Bianchi are likely to be. And there’s a 75-80% chance that he will fly through all this with absolutely no significant complications at all.

This is our next step. It’s a very big step, and it’s very likely to be a step in the right direction. It could be huge for L, and for all of us. This surgery is scary, and difficult, and overwhelming, and it’s hope.

Original diagrams courtesy of University of Michigan Children’s Intestinal Rehabilitation Program, with helpful labels added by ThisGutsyLife.

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