T minus 6 days and counting

We’ve less than a week to go before Younger Brother’s head surgery, and people keep asking how I’m doing.  I never know how to answer questions like that.  I’m confident that my baby is going to be OK in the long run, but I’m increasingly stressed about the hows and whats of it all.

In any big event, my worry gets focused on logistics.  Getting everyone to the right place at the right time, with the right paperwork signed and the right preliminaries completed: these are the things that cause me stress.  I also like to know as much as possible in advance about what’s expected of me, lest I fail to live up to those expectations.

Right now, I’m worried about the pre-op testing.  We might have to take Younger Brother in for a blood test or something, to make sure he’s healthy enough for anesthesia.  Or maybe it’ll just be a phone screen.  I don’t know, because folks from the hospital are supposed to call about it and they haven’t yet.  I can’t just trust that what needs to get done will get done, because we’ve had multiple referrals get lost in the ether at earlier steps in this process.  I’m worried that something important will be forgotten and we’ll show up on the day of surgery and be told to reschedule.

(I’ve called the pre-op testing people.  The receptionist said I should hear back today.  We shall see.)

I’m worried about Younger Brother getting sick.  His brother has caught yet another preschool cold and we’re trying hard to keep the germs contained.  The surgeons tell me that a bit of sniffles is fine, but a phlegmy cough is a no-go with anesthesia.  We’d have to postpone the surgery.  I’m worried that my mother will drive 1000 miles to be with us, only to have the surgery rescheduled for illness.

I’m not worried about the surgery itself.  In a way, it will be a relief to know that at that point, all we have to do is wait.  I trust the doctors and the nurses and the anesthesiologist to do their best for my baby.  He’ll be asleep; he won’t know what’s going on.

I’m worried about after.  When will we get to see him?  When will he be able to eat?  Will I be able to hold him and nurse him?  Will we be able to stay with him?  Will we be expected to be with him 24/7?  That last one seems horribly selfish to ask, but… I’m worried about my own sleep.  I’m worried that the nurses will judge me if I need to leave him for a while and take a nap.  My only experience with babies and hospitals has been giving birth, where they expect the parents to provide basically all of the infant care.

I’m worried about when he comes home.  Will it be like the newborn days again?  Will we be waking every hour to tend to a poor sad baby who doesn’t understand why he hurts?  Do we have the right clothes for him, things that can go on over his healing head?  Do we need more baby hats?  I’ve been reading every craniosynostosis blog I can find, trying to get a feel what this part is like and how long it takes to return to “normal.”

I gave up practicing Christianity a long time ago, but I have been thinking about Matthew 6:34 lately.  This is the “sufficient unto the day is the evil thereof” verse, but I prefer the New International Version:

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

If ever I needed to stick a Bible verse in big bold letters on my wall, it would be this one.

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Long scary medical words about my baby’s head

Metopic craniosynostosis.

The infant skull is made up of multiple pieces, allowing the head to be squashed a bit during birth and then accommodating rapid brain growth over the first few years.  As a child grows, the fontanelles (soft spots) close, and the suture joints between the skull pieces begin to harden.  The first suture to close is the metopic suture, running down the forehead between the frontal bones.

Sometimes one or more of the skull sutures fuse too early, before birth.  This is called craniosynostosis, and this is what happened to Younger Brother.

Looking back at his newborn pictures, we can see the bony ridge running down the center of his forehead, the sign of a prematurely fused metopic suture.  Nobody thought anything of it at the time; after all, newborn heads are often somewhat misshapen.  He also had a big—and completely normal—purple bruise at his hairline from a long time spent crowning in the posterior position.  The bruise faded within about a week.  The forehead ridge didn’t go away.

For a while, I figured it was just a funny quirk of his appearance.  With fine, patchy hair and a lingering birthmark on his eyelid, Younger Brother is adorably goofy-looking in the way that only babies can be.  His behavior and motor skills have progressed normally, and his head circumference at his two-month checkup was right on target.

Eventually, though, we started to get a bit concerned.  The ridge remained prominent, and his forehead took on a distinctly pointed appearance when viewed from above.  (Metopic craniosynostosis is also known as trigonocephaly, or “triangle head.”)  We decided to ask about it at his four-month appointment.

“Wow,” announced our pediatrician.  “I’ve never seen this before in 30 years of practice!”  Gee, thanks.

Fortunately, though, the doctor knew what it was.  He’d seen craniosynostosis of other sutures, just not the metopic, and he knew the plastic surgeon in town who could treat it.

Left untreated, Younger Brother’s condition could constrain future brain growth and lead to developmental problems.  In 10–15% of cases, the surgeon told me, untreated craniosynostosis produces measurably increased pressure on the brain, which is very bad.  So this isn’t a watch-and-wait kind of situation.  It won’t resolve on its own.

My baby needs surgery.  And not just any surgery—they literally have to remove his forehead, reshape the bones, and reattach them so as to allow his skull to grow properly in the future.  The rate of complications is very low, especially in children that are otherwise healthy, but it sure does sound scary.

Now that we’ve had his diagnosis confirmed, I’m of many different minds about it.  Part of me is optimistically stoic.  It’ll all be OK, just stay strong, get us through this, he’ll be fine.  Part of me is pretty freaked out, especially after learning how swollen he’ll be in the hospital after the surgery.  He won’t even be able to open his eyes for a few days.  Poor kid, he will be so sad and scared!  He won’t know what’s going on.  What if he’s never the same?  And part of me—especially in the middle of the night—is worried that we’re all just overreacting.  What if it turns out he doesn’t need surgery and you’ve told everyone for no reason?

All the parts of me want to give my baby extra love and hugs and songs and snuggles.  I stroke his funny head and imagine what we’ll tell him about it when he’s old enough to understand.  We haven’t told his brother about it yet; we’ll wait until the surgery is scheduled and then give an overview appropriate for a three-year-old.  Little Boy had his adenoids removed last week, so he has some personal experience with the concept of hospitals and operations, and won’t, I think, be overly upset.

A weird little part of me is glad that I didn’t put more effort into job-searching in the fall.  If I had, we might’ve already moved and be dealing with new doctors, new health insurance, and complicated schedules with limited time off.  As it is, we’re here in a place that we know, with reasonably good insurance, and I have all the time I need to take my baby to his appointments.  Sometimes, things work out the way they need to.