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Our Baby’s Endoscopic Strip Craniectomy for Sagittal Synostosis

Welcome to the post about the endoscopic strip craniectomy surgery for Felix’s sagittal synostosis. There’s a sentence I didn’t anticipate writing a month ago…

I wrote about the baby being diagnosed with craniosynostosis but I don’t think I explained adequately how blindsided we were by this whole thing. We had a little less than a week between the pediatrician’s referral to the specialist and that first appointment where we learned that he had this birth defect and then nine days after that we had the surgery. In that time I went over and over the risks/benefits in my head and for the majority of that time I was absolutely against Felix having surgery.

For one, I didn’t want anyone to cut into him. Also, I didn’t want anyone to cut into him. Plus, I didn’t want anyone to cut into him. And finally, leave his head alone.

Seriously, though, I had a hard time wrapping my head around the idea that this perfectly lovely, happy, healthy baby had something so wrong with him that he needed a minimally invasive but still fairly major operation on his skull. I could see it, sort of, in the unusual shape of Felix’s head, but I figured his head was fine by me and surgical correction was unnecessary because heads don’t need to be perfect.

Of course, in my mind I was simply taking his slightly “deformed” head and making it larger for the future, missing that his head would continue to be stressed and stretched as time went on. I won’t share pictures of children who don’t have this condition treated because I don’t have the rights to any of those photos and wouldn’t want to put some poor kid up as the example for “well we certainly don’t want this to happen!” but the examples I saw of this condition in later life were very sad. Add to that pain and brain damage and my hard stance on surgery became a nonstarter. So we scheduled him for the earliest date we could to ensure that he had a shot at the endoscopic (minimally invasive) procedure.

Preparing for surgery

We didn’t have control over much when it came to surgery and getting him treated but we did have some control over the prep so we spent the week before surgery doing these things:

/// keeping Felix pretty quarantined from everyone to reduce the chance of surgery-postponing viruses

/// getting the house in order to prepare for Kyle’s mom to come and take care of the kids while we were in the hospital and to make life easier when we got home

/// starting a binder to keep all of his medical documents and personal info (insurance and SSN, etc.)  in one place as well as photos so it will be easier for us to see his progress

/// joining craniosynostosis support groups on Facebook to help answer some of our questions

/// connecting with Cranio Care Bears, who sent us a lovely soul-lifting care package and gave us some very helpful information prior to surgery

/// picking up some outfits that don’t have to go over Felix’s head to make getting dressed a little easier post-surgery

/// visiting the orthotics clinic to get him set up for the helmets he’ll need during his year of recovery

/// checking in with our insurance company to make sure his surgery didn’t need to be pre-approved

/// getting blood drawn the day before surgery so they could run a panel and double check his blood type

* He got a tag when they did his blood at the lab and a sticker on his thigh that they used in surgery. I wish I would have looked more closely because whoever put the tag on his ankle put it on too tight and it ended up cutting into his skin overnight. It would have been worth it for me to cut it off and just take it with us. 

We also went to Build-a-Bear the day after we found out about the diagnosis and picked out a monkey and a surgical outfit to be Felix’s special hospital buddy. Kyle and I took turns sleeping with the monkey and carrying it around all week so it would smell a bit like home. I don’t know if it worked but Felix definitely loves Dr. Monkey.

We are profoundly blessed to currently live about ten minutes from the children’s hospital including the time it takes to circle around and around in the parking garage trying to find a spot. For this reason, we didn’t pack as much for the surgery as other families might. I’m also the only one who actually slept at the hospital since Kyle split his time between being with us and being home with his mom and the other two kids.

Our hospital packing list:

/// our binder with all of his papers and documents

/// my laptop and charging cord (never used)

/// a paperback book (never opened)

/// a journal and pen (hardly used)

/// a pair of leggings, long stretchy dress, sleep bra, and nonskid socks for me

/// disposable toothbrush, deodorant, hand lotion, scrunchie, and chapstick for me

/// a zip up going home outfit for Felix

/// kimono style snap pajama set for Felix

/// a lunch sack of snack foods

/// breast pump and bottles (barely needed and ditched in favor of hospital’s superior equipment)

/// Dr. Monkey

/// iPhone, iPad, and charging cord

/// throw blanket and pillow for me

/// Boppy pillow and soft minky blanket for Felix

At home we don’t let Felix sleep with anything because we’re still pretty nervous about SIDS but since he was going to be in the hospital on a million monitors we figured it was fine to crowd his crib. The Boppy in particular was nice because it gave us options when positioning him in ways that didn’t irritate his stitches.

Ultimately I could have used a few more snacks and some little teether toys to keep him occupied. I underestimated how aware (and bored) he was going to be in the days after surgery so we spent a lot of time playing with his blanket and monkey friend.

Day of surgery

I fed Felix for the last time early in the morning because that was the cut off for his surgery and then gave him a bath in the kitchen sink. We were told to bathe him but not to use any lotions, creams, or powders, and to dress him in clean clothes.

We participated in a research study about craniosynostosis so we started surgery day by getting our own blood drawn at the lab. I’d had the shakes pretty bad the day before surgery because of all the stress so I was fairly tied in knots by the morning of but Kyle and I were able to joke and chat and keep each other pretty steady. Felix had to fast starting at 7 AM for his noon procedure so he was a little fussy but he really did very well under the circumstances.

After we gave our blood samples we went up to check in to surgery. For some reason, this was one of the most stressful parts of the day because we spent more time than I thought we would just sitting in the hallway waiting to be called back. By this point, Kyle had to hold the baby because he was hungry and he started to fuss whenever I got too close. Luckily, Kyle always relaxes him so he drifted off while we waited.

They finally took us back to get us ready. First we had to strip him and then wipe him off with some special cleaning towels being careful to switch towels to wipe his top and bottom half. Then we put him into his little surgery outfit which was a very well-used hospital gown that had only two working snaps and which almost put me over the edge stress wise. I can’t say enough about my husband and this point. Total rock.

The neurosurgeon and plastic surgeon both came in to talk to us as well as four different nurses and a person from registration. We signed some papers and nodded a lot and everyone was very reassuring and calm. Finally, the anesthesiologist came in and explained what he was going to do (two IVs and a tube in Felix’s nose) and then it was his job to actually walk us to surgery.

I feel bad for him because I’m sure that lots of parents fall apart at this point and he must get stuck in the hallway with people who completely lose it. After all, you walk down to this random line painted on the floor and then you have to physically hand your baby to this man in scrubs and he disappears around the corner with your kid while you just stand there and lean comically over the painted line to try to watch them walk away. We did OK. I cried, but only a little, and then Kyle walked me back to the waiting area.

At this point we could have just waited with all the other families for the next couple of hours but our time was broken up because I had to find a breast pump since I hadn’t fed the baby in more than five hours. We were escorted to a pumping room, which was nice because it was private, and we settled and chatted and I took phone calls on unrelated things to pass the time.

When we actually did wait, there wasn’t much I could do but look at the world’s slowest clock. They had snacks and drinks for the families and everyone around us was chatting or knitting or reading or crying or, like the girl next to me, taking sad selfies of themselves in front of the surgery sign, fixing their hair, and taking more selfies. Hashtag prayers.

They told us that they’d give us an update about an hour and a half in but they didn’t come out until two hours had passed. Two hours and six minutes to be exact because I was literally pulling my hair out by that point. At two hours and six minutes, they came out and told us that it all went well and he did great. Twenty minutes later they took us back to recovery to see him.

I don’t know why, but we thought he was going to be in terrible shape. He was actually not doing too bad. He was crying a sad stridor-y cry because of the anesthesia and he was obviously out of it and sore but they let me pick him up and rock/feed him right away and his head looked almost normal except for two large suture lines on his scalp. He ate just like he would normally but his oxygen level dipped down a little since he hasn’t mastered eating and breathing at the same time so they used the oxygen mask to blow air on him while he ate.

After he was done, they put him in the crib and we followed him up to the infant unit. He was asleep through all of this, even as they hooked him up and checked his vitals, and he didn’t wake up for about two more hours. The first evening was rough because every time he woke up you could tell he was uncomfortable but he was able to nurse for comfort and the medications they gave him really helped.

Recovery

We spent two nights in the hospital just to make sure that he was doing fine on the medications. So far, he’s bounced back so much faster than we thought he would and, four days post-op, he’s almost back to his usual self. He’s still on medication and we’re taking care of his wounds and his new enlarged (end to end) soft spot so we have to be careful with him but it hasn’t been anywhere near as overwhelming as I thought it would. It’s nice to be on this side of it because now I can say things like “I’m so glad we did this” and “I would definitely recommend this” and “This was not as big of a deal as I thought it would be” even though none of that was true at this point last week.

Mostly, I just love this bug. Such a trooper.

Coming soon – helmet!!

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1 Comment

  • Reply Anonymous

    Thanks for sharing your experience!

    October 21, 2017 at 7:19 pm
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