Thursday, September 13, 2012

Judah and a CT Scan...

Nothing prepares you for parenthood. And I'm not talking about the dirty diapers and sleepless nights or what to feed him. I'm talking about the worry. The constant, never-ending anxiety that comes along with giving birth to an entirely new human that you made. SIDS still terrifies me and I steal into Judah's room several times in the evening just to make sure he's still breathing. I take zero chances with his safety and well-being.

So the worry came to a head this past week in the aftermath of Judah's 6 month appointment. It all began about a month or so before his appointment when I realized I was having a hard time feeling his soft spot. A little Dr. Google research (I know) let me know that normal closure of the anterior soft spot (the one on top of the head) falls within the range of 3 months to 18 months. A pretty wide range, but I thought we should mention it to the pediatrician anyways at his appointment. She agreed that she couldn't feel it either and ordered a CT scan to rule out Craniosynostosis, a birth defect that occurs when one or more of the sutures in an infant's skull fuses prematurely. Our skulls are formed of large bone plates that move and expand as we age so that our brains have room to grow - obviously pretty important. I was pretty sure this wasn't the case because the only symptom Judah had was the soft spot closure. However, knowing the ONLY fix for Craniosynostosis is surgery, I was terrified.

Judah doesn't exhibit any of the other Craniosynostosis symptoms which can include a misshapen head, restricted head growth, developmental delays, or ridges along his skull.
And then the preparation for the CT scan came. We had two options: we could either choose to sleep deprive him or we could sedate him. We chose sleep deprivation as the easier (?) less invasive route. If there's one thing I'm strict about - it's bedtime. He goes to sleep at 7:30 every night and sleeps 11-12 hours. Sleep is number one on my list and I feel it's so, SO important for health and development.

The sleep deprivation route required us to keep him awake until midnight, then wake him up at 4:00 am without feeding him and arrive at Children's Mercy Hospital at 7:30 am. The thinking is that he'll be so tired and hungry that you'll get into the CT lab, give him a a bottle, and he'll immediately pass out so they can do the scan. Keeping him up wasn't too bad, although he only made it until 11:00pm. He watched us make dinner - something he doesn't normally see because we usually cook and eat after he goes to sleep. He probably thought that we never ate. We went outside, played, watched a little Aladdin (this kid never gets to watch TV, so he was pretty fascinated), and then started his normal bedtime routine around 10:30. He passed out in my arms at 11:00 and I figured, "eh, good enough." It was the morning that was rougher on all of us. He made a pretty vocal protest after being awoken so early, but I knew it was going to be the car ride that would be the true challenge to keep him awake. He tried to sleep so bad but I was whistling, moving his arms and legs, and snapping to keep him awake.

He seemed pretty alert when we got to the hospital. It was a new environment and so colorful, so there was lots to look at. Children's Mercy is a wonderful hospital and is nationally recognized and does amazing things (they've treated a family member and are truly great). However, you can't help but get the feeling when you walk in that "my child does not belong here, not MY baby..." But then you realize that every frightened parent who walks through those doors probably has the exact same thought. Knowing there are kids there that are truly sick shocks you into reality, and you can only sympathize and pray for those families and hope that your child doesn't come to be counted among their ranks.

So we get checked in and back to the lab, and wouldn't you know it? The little angel is wide awake. All of our hard work was for naught. Then they tell us he doesn't need to be asleep, he just needs to be calm and still. If we had to sedate him, we would have to reschedule the appointment. So we get him all strapped in and swaddled into the CT flatbed, and he looks like a tiny mummy all wrapped up while we stand by in our lead aprons. The assistant held a little flashing toy for him to look at and he was still for the two minutes it took to do the scan. All of that struggle to keep him awake and he only needed a little flashy light to look at. That said, the kid took two three-hour naps that day and still went to bed early. He was wiped out.

Those lips! Those eyelashes! No wonder he gets mistaken for a girl so often.
We got the call from our Pediatrician the next afternoon - his anterior fontanel (soft spot) is indeed closed and the Metopic Suture has fused. now what? Well, she says she doesn't "think" that means he has Craniosynotosis since she believes that the closure of that particular suture comes along with soft spot closure. But....she's not sure. She says she's going to recommend us over to the specialist cranio-facial surgeon at Children's Mercy because she doesn't feel confident enough to give us the go-ahead that Judah is in the clear. Fair enough - I can understand that a pediatrician who doesn't deal in this specialty would want someone more experienced to give us the all-clear.

This diagram shows the two main sutures - the Coronal which runs from ear to ear and the Sagittal which runs from front to back. The two that are shown but aren't marked on here are the Lamdoid (spelling?), which runs across the back of the head, and the Metopic which runs from the fontanel down the forhead to the nose.
So now once again I'm sick with worry. The call was not exactly reassuring. A quick trip back to Dr. Google shows that normal closure time for the Metopic Suture is between 3 and 9 months of age. Huh, so basically his CT scan shows normal results? Why would she recommend us to a specialist if this is the case and all of Judah's other sutures remain open and normal? As of today, we have called and we are STILL not on the specialist's schedule. Scott asked why he couldn't just look at his scans and clear him, but apparently we have to go in to be seen in person. The fact that you cannot just call a doctor and get an answer and the inner-workings of our medical system is a whole other blog post just in and of itself. And I have to wonder, if I had never mentioned anything about his soft spot in the first place, then we wouldn't even be in this situation in the first place.

How did my parents ever survive my childhood and this constant worry? I think back to the times I had to go under anesthesia - tubes in my ears when I was five and tonsils removed when I was nine. How did they handle it? As an invincibile kid, nothing scares you. I was just excited to have 10 days off from school when I got my tonsils removed. In truth the recovery was awful and I still don't enjoy Jell-O to this day. But I've never given a thought to my parents' stress and worry until I became a parent. Not even adulthood, but parenthood itself, makes you realize what your own parents went though. So thank you mom, dad, and step-mom, step-dad and in-laws for worrying about me and surviving my childhood. I wonder if something truly awful happens, would we be strong enough to get through it? I don't know, and I hope we never have to find out. But I know now that we've signed on for a lifetime of worry and stress. Hopefully this mess will be over with soon enough.


Mrs. Ruby said...

Aww. Sweet little Judah! I'm just sure everything is ok! So so terrifying though. And I are we ever going to survive this parenthood thing???

Mark Killingsworth said...

Dear Niece- Hope it all ends up okay. I empathize with your worry-
I'm proud of your maturity and responsibility. I'm impressed with your writing! I feel I know you better through this post!
Thanks for sharing. I am happy to help Nancy babysit when you need a break! Love, U. Mark