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:

step-illustration-2

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:

bianchi-illustration

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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