Category Archives: Fun With Craniosynostosis

A Face Only A Mother Could Love

Last week, Caleb and I took the family downtown OKC to meet up with a photographer friend of mine for a little Sunday-afternoon picture-taking action. She spent about an hour with the kids; we grabbed ice-cream on the way home and that was that.

I got my proofs back yesterday. And I know what I’m going to say in these next paragraphs is going to sound supa-vain, but…my son is beautiful.

No, he really, really is. My little boy–my cranio baby. The grumpy, rumple-faced looking kid with the protruding forehead has turned out to be one of the most gorgeous children I’ve ever laid my eyes on, and I’m of course not just saying that because he’s my son.

Along with Merrick’s diagnosis of craniosynostosis in 2008 came hours upon hours of online research–my first and foremost concern was getting Merrick’s skull nice and roomy for future brain growth. I was consumed with the fear of his upcoming surgery and I prayed that he would be strong enough at 4 months old to survive it. Anything after that was purely cosmetic…and yet, my second biggest worry was that he would look different for the rest of his life. I dwelled mostly on the before/after pictures of cranio babies, and, to me, though every one of those children had undergone rounds of extensive corrective surgery, they still had the cranio “look” years later.

What would this condition ultimately do to him? How would the surgery affect his life in years to come? Would people be able to tell? Would his head be misshapen or his face show hints of deformity? Would my son look normal enough to fit in? Would I look at him in 2, or 5, or 15 years, and feel pride–or pity–or sorrow? What kind of a mother was I, for caring so much about outward appearances? I would love–I did love–my son, no matter what he looked like; I’d go through hell and back if it meant keeping him happy and healthy.

Fast-foward almost 4 years later, and Merrick is not only happy and healthy, he’s rambunctious and hilarious, and entertaining and caring and sweet and brave and protective and scrappy; he’s been my little tough man from the moment he was born.

And I can say, with all the objectivity I can muster, that he’s breathtakingly handsome.

So you people forgive me if I am overly-delighted about the radiant beauty of all of my children. Their unique facial expressions, their mischievous little grins, their funny personalities and quirks–the rest of the world could find them hideous but I will look at them and my heart will always burst with pride.

Check out Michele Morgan Photography if you’re in the market for some family photos. She is an amazing picture-taker and kid-charmer. Can’t wait to get this finished product up on my wall!


Champ

 
I honestly can’t believe it.
 
It’s been one whole year since Merrick’s skull was hacked to pieces, and we’ve managed not to knock/bump/bang/jab/stab his exposed brain since then.
 
Don’t get me wrong–Merrick is a wild man. His forehead’s taken a beating; his nose has cushioned many a fall. But the rest of his perfect little head is not our doing–only by the grace of God has he survived in our house, on our tile floors, around our sharp corners, our pushy dogs, and my clumsiness. Without a helmet. Or a padded cage.
 
2008 was super-eventful for our family. Looking back, I know there were worse things that could’ve happened. I have friends who have gone through so much more with their own sweet babies. But at that point, I felt like life was bitch-slapping us left and right. Our old golden retriever died. Caleb got laid off one month before Merrick was due, and then, of course, Merrick came–and then, there was something off with his head. Our pediatrician noticed it only a few hours after his birth–“Hmm. We’ll just keep an eye on that head shape”–but I blew it off, thinking that the good doctor must’ve been smoking crack since the kid was still crunched from, oh, BEING BORN.
 
Note: turns out, doctors sometimes know what they’re talking about.
 
When we first found out Merrick had craniosynostosis, my family was visiting–and thank God for that, too. Although we waited for the results of x-rays and ultrasounds and CAT scans to come back before we let ourselves believe it, Caleb and I suspected. Every night I’d sit and rock him and stroke his hair, and I’d run my fingers over and over the little bumpy ridgeline that ran right down the middle of his head. I’d look at his forehead as I fed him and I’d notice how it protruded so much more than the girls’ had, and I knew. But it was still a blow.
 
Craniosynostosis is a big word for a woman with 1 newborn, 2 other kids, 3 dogs, and a husband who’d just been laid off. It’s not something I could easily wrap my head around (Get it? Head? As in skull? Head–you know, because…um, nevermind.) Merrick’s skull was closed. Where a normal infant would have a nice soft spot, Merrick had none. And as his brain grew, the parts of his skull that were open would be pushed in all kinds of wrong directions, and his head shape took on the look of an…I don’t even know what. Maybe a hammer, or a boat. It was long. He looked angry all the time. There had to have been a great deal of pressure on his brain, because he threw up constantly–literally, constantly. I was either feeding him or changing his clothes, or my clothes. My parents, my friends, specialists, doctors, nurses–they all said he’d be fine, that we’d get through the appointments and the tests and the surgery, and within a year’s time, it would seem like a dream. But I felt like the world was coming to an end.
 
I’d never had to worry about anything so serious in my life. I’d never had to make the really tough decisions–although, in this case, there was no decision to make. Merrick had to have surgery. There was no question.
 
At 4 months old, on a Wednesday morning in late September, Merrick had his craniosynostosis surgery at OU Children’s Hospital. Despite needing a blood transfusion in recovery (and despite getting Caleb’s jacked-up blood) he came through it extremely well. It was so hard to see him all bandaged and wired up…and bruised and swollen. It was hard seeing him lying in a hospital bed, period, and knowing that I couldn’t pick him up, even if he cried. Every little beep from the machines he was hooked up to freaked me out, every squirm he made had me calling for a nurse.
 
And yet, as terrible as I thought he looked, he was far from helpless. He was stronger than I was. “Pain? What pain? I’m just pissed because you won’t take this stupid velcro bootie off my foot. What the hell, Mom?”
 
We were outta there by Friday afternoon.
 
Things since then have gone great. Merrick was a trooper, I tell you. The biggest complication we had in the weeks after sugery? An ear-infection, brought on by a runny nose which came with the cold he must’ve picked up in the uber-sanitary place that is the hospital. Once he was over that, we tore up the town. I got some dirty looks just about everywhere I went with him–that scar was gruesome, and while the stitches were in, there was to be no covering it. A few people would ask questions–I’m sure most people thought we had either dropped him accidentally or beat him on purpose. Ah, good times.
 
You’d never know just by looking at him today that in his very young life, Merrick was as courageous–well, mostly oblivious, but I like to think he was courageous–as he was. He’s got a gorgeous (perfectly shaped) head of silky blond hair, a smooth forehead, and, most of the time, a happy, happy look on his face. He walked at 9 months. He’s running, climbing, talking, laughing, and getting into everything he’s not supposed to. Children in general can change your life, and that’s been true of all mine–but Merrick in particular has taught me–and my husband–more about strength and gratitude than we ever imagined possible.
 

This Is Off Subject, But…

 
It occured to me that my kid bears an uncanny resemblance to Vic Mackey.

Hell Week

 
Oh yeah.
 
Nevermind just recovering from having his head hacked into; that was sooooo 7 days ago. Right now, Merrick’s battling an ear infection, a wicked bad runny nose, and a nasty cough. Plus, he’s teething. He hasn’t gone two waking minutes without screaming–and he hasn’t slept unless he’s safe in our arms, which has lead to some seriously sleepless nights (and days) for me and Caleb.
 
Caleb has that freak fever Mia got a week ago. He’s been running between 101 and 103 all day long. What the hell?
 
Our house is so messy that professionals need to be called, lest our kids get taken away from us. We’ve eaten left-over pasta and PBJ sandwiches until we’re blue in the face. And we’re all getting on each other’s last nerve.
 
My favorite movie is "Signs". What’s not to love? A man struggling with his faith, 2 kids who are too smart for their own good, aliens in a corn field, and Joaquin Phoenix. I bet none of the people in that movie could see the light at the end of that tunnel–but God had a plan for them. Twisted as it was, God had a plan.
 
I’m trying to say little prayers of thanks and think happy thoughts whenever the urge strikes me to sit in a closed garage with my car running. It could be worse. Sniffles fade and fevers break. And we’re nowhere near a cornfield. 7 days from now, we’ll all look back on this and laugh…

What I Remember of Merrick’s Surgery and Hospital Stay

 
Okay. So. I put up an album in Photos the whole ordeal, so you can look if you want but it won’t be in your face if you don’t. I do agree that I’d rather see a baby looking tired and swollen rather than hooked up to tubes and machinery, but that scar does make even me a little queasy sometimes. Anyway. Here’s what happened:
 
On Wednesday morning I got up at the butt-crack of dawn, packed, and drank coffee like a mofo. I hated to wake Merrick up at all–1) because I knew what the rest of the day had in store for him, and 2) because I figured he’d be starving and consequently cranky. We had to leave the house by 4:45 a.m. in order to snag Caleb’s dad, who had flown in the night before, from the airport. I waited until the last minute to pick him up out of his crib and change his diaper, then I left him in his snuggy little sleeper and popped him straight into his car seat. He snoozed all the way to the OU Children’s Hospital.
 
We parked. We made our way to the third floor, checked in, and settled down to wait. I was sort of hoping we’d have a little time to spend with Merrick before they called us back, but since he was number 1 on the list, it didn’t take long. They took us back into a hallway full of beds and curtains. Over the course of the next half-hour, 50 different people came by and asked the same questions over and over. We put Merrick in a fuzzy yellow hospital gown and some cute hospital booties. He was happy as a clam–talkative and smiley–so unaware, and that alone was heartbreaking. In curtained rooms all around us, you could hear kids crying, and begging their parents not to leave them.
 
So sad.
 
When the lady who takes away the babies came to take away our baby, I started to panic. I thought about grabbing my son and calmly walking out of that place–surely his head was not so messed up that he couldn’t just learn to live with it! But we handed him off, and he just smiled and cooed at us over the baby-taker’s shoulder as they went through the double doors.
 
And then I did loose it a little bit.
 
We knew it would be awhile before the operation got going, so we grabbed some breakfast in the cafeteria before camping out in the waiting room. The surgery started at 7:30. At 8:45 or so the doctor came out and shook our hands–he was done. (WARNING: UTTER GROSSNESS AHEAD) He had basically scalped my child, then cut out a 2-inch wide strip of skull-bone from the center of his head, and even more from the sides, creating a big honkin’ soft spot where Merrick previously had none…and then sewed it all back up.
 
I expected to be able to go back and see Merrick in no more than 30 minutes–but an hour and a half later we were still waiting. I think it would be fair to classify the entire morning as one of the most horrible times of my life so far. It turns out he ended up needing a blood transfusion in the recovery room. We were finally allowed to go back there 2 hours later.
 
Caleb seemed eerily calm–I was hyperventilating on the inside. I won’t go into detail, but let’s just say I didn’t like seeing my baby all wired up in a hospital bed with a white bandage over his tender little head–although at that particular point I don’t think I could’ve handled seeing the actual scar. And "scar" is a mild word for it–maybe "massive head wound" would work better. His head was very tall, and I couldn’t help but imagine that it was his brain overflowing from the gaping hole in his skull. (It wasn’t.)
 
They moved us up to the Pediatric Intensive Care Unit, where 2 nurses exclusively pampered Merrick for 24 hours. His head was a little puffy on the first day, but other than that everything seemed normal–and unless someone was jacking with his IV or pricking his fingers, he slept. I could not pick him up for a while, and I wasn’t allowed to breastfeed since they needed to keep an exact measure of how much he ate, so I pumped and fed him through a bottle.
 
The next morning, the neurosurgeons came to remove the bandage, revealing the most gruesome sight I’ve ever seen–partly because for the nature of what it was, and partly because it was on a little bitty baby…I pretty much couldn’t stand to look at my own son. His head and face were very swollen, but he could still open both of his eyes–which was apparently not typical. He was taken off morphine…this day was the worst day. Merrick was just not lovin’ life at this point. We were transferred to the floor where the plain old sick kids stay; where the nurses care for 4 or more (I want to say a lot more) patients at a time–and they might check on your child if he was dying. Maybe.
 
We did a lot of holding him up rather than laying him down so the swelling wouldn’t get so bad–and it didn’t. His left eye got pretty puffy but he could still see out of it. His entire head felt soft and mushy and it rippled like a water bed whenever I rocked him. Ewwwww, no?
 
On the morning of the third day, Merrick was unhooked from most of his whatnots, mainly because he kept pulling everything off or out. His swelling was less than what it had been the day before even though we had been warned the third day would be the worst. He had actually slept a little bit the night before, and he was talkative and happy. His neurosurgeon said he looked a lot better than most cranio patients and that we would probably get to take him home by the next day, if not that afternoon. We expected the discharge process to take forever (seeing as how getting Merrick’s medication always took an hour or more), but once the doc gave the go-ahead, that hospital staff practically drop-kicked our asses out of there. We were literally walking out of that place within 15 minutes–true story, no lie!
 
And so we came home.
 
Other than having some trouble with a sore throat (from the ventilator) and constipation (I suppose from all the different meds?), Merrick is doing wonderfully. He’s still not keen on laying down on his back, but I think it’s his tummy that’s bothering him more than his head. Everything is back to normal–it’s almost as if nothing ever happened. I keep thinking to myself: "That was easy…a little too easy." But I am thankful. I’m so very thankful, to our family and our friends for all their help and support. I’m thankful that Merrick’s condition was mild and that it’s essentially cured now. I’m thankful we only stayed 3 days in that depressing hospital while some poor kids are there–sometimes alone–for months and months. We are definitely counting our blessings and enjoying every single moment with our son who is, was, and always will be, perfect, in every way.

Another Quickie Real Quick

 
We’re home–have been since Friday afternoon. Merrick is great–he’s not even slightly fussy and we haven’t been giving him anything stronger than infant tylenol for the alleged pain he’s supposed to be in. He hasn’t been too fond of sleeping in his crib, but I want to chalk that up to being held by Mommy and Daddy holding him 24/7 this past week.
 
It’s been nice having the extra time to spend with my mom. She did an excellent job taking care of the kids, keeping the house clean, and remembering to feed the dogs. I’m going to shrivel up and die when she leaves tomorrow.
 
Cheyenne has raised a whopping $775.00 for Multiple Sclerosis, and we are still one week out from the big walk. We’ve been so impressed and thankful with what everyone has contributed so far.
 
I’m going to work on a nice long entry about the whole experience–after I process it in my own head, but since we all know my brain hasn’t exactly been running at maximum efficiency in the past 5 months–okay, 12 months–it might take a while.

Back for a Second

  Merrick is fine. Surgery went well. Took what seemed like forever, but it went well. He was pretty swollen and pissed off for a while but today he’s getting back to his sweet self. It definitely looks like someone hacked his head wide open and then crudely stitched it back up. Other than that, things are good–ran by the house for a quick shower and then I’m off to the hospital again. We might even get to come home early. I’ll update more indepth later on in the week. Thanks to everyone who wrote and called to check on us! Love, Toni

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