Cranio… What??!! Part II

On September 9, 2013 the boys and I drove to Edmonton for the big event. Max met up with my Mom, where he would stay for the duration of Cooper’s, and Cooper and I travelled to the Stollery Hospital for his pre-admission. We met with the anesthesiologist, went over fasting, what to expect the morning of the surgery and some details about his after care. There was a wonderful lady named Cindy that helped calmed my nerves, re-explained scenarios and provided great tips to get through the night and morning with trying to fast a baby. While every person at the Stollery and the Paediatric Neurosurgery department were fantastic, I’ll always remember and be thankful for her kindness that very emotionally charged day.
That night we stayed in a hotel and Paul joined Cooper and I late evening after work. We had decided to get a hotel room to give Paul somewhere to sleep at night, and myself an opportunity to go during the day to catch a few hours of uninterrupted sleep. It’s funny now- but I was more concerned about getting through the fasting then I was for the operation (well until he went in). I had a plan though- 4:06 am was the last time he could nurse, so I woke him up at 3:30 and we had a bath together. I made sure that Turkey was wide awake (no dream feeding!) but after a warm bath he would be nice and relaxed. He bathed, he ate, he snoozed- then at 6 am the 3 of us headed off the Stollery.
4 am bath time at the hotel!

 

 
Patiently waiting for surgery

 

Shortly after arriving and confirming all details, we began the waiting. We were so very fortunate to have Paul’s brother Mike and my best friend Wendy meet us there for emotional support- but in retrospect, it was more of a distraction, which we truly appreciated. To this day I still don’t get how Cooper managed to go that long without eating (as he never went more than a few hours before and up to a year after), but I was so very thankful for a fairly content little baby that morning.
Then came the moment of passing him over for the surgery. I remember Dr. Mehta writing down our cell number ‘just in case’ and then transferring our baby boy from our arms to the waiting nurse. It was at that point the anxiety started.
There isn’t really a ‘place’ to wait while the surgery takes place, they just give you an approximate time when your baby should b going to his room. Mike and Wendy- and even Paul’s Mom joined us later in the day, and were great at keeping us distracted, but there came a point when we both started pacing. Cooper was due to be back and nobody at the desk knew why he wasn’t yet. Dr. Mehta’s nurse practitioner, Wendy, finally came to inform us that Cooper had a few setbacks during the surgery but he was fine now and in recovery. I remember a splurge of emotions- relief, nausea, panic- and overwhelmingly desire to see him.
Nearly an hour later, we could see the stretcher get off the elevator and the brim of Cooper’s car seat floating down the hall. It was that point that I broke- all the emotions of the last few weeks that I’d been holding onto suddenly were released to see him. We stayed in ICE for the first night to monitor his breathing and fluids. It was explained that during the endoscopic surgery, a ‘blood lake’ had been struck which was the reasoning for the extra blood. In addition, Cooper had some issues breathing on his own while coming out of the anesthetic, which caused his extra long recovery time. Because of the additional IV fluids and units of blood, he had swollen right up and was given to drug to help his body expel it (it was pretty cute). The one thing I wasn’t expecting (having had surgeries myself I should have), was the jar of baby hair Wendy handed over that had been shaved off- sometimes it’s those tiny details that set you off. At 11 weeks old, he had his first hair cut in the operating room.
   
 
My little Trooper

 

Miraculously Cooper healed much faster than we all expected and a few days later were given the green light to go home if we felt comfortable (let me assure you this option was not questioned even for a moment!) Wendy had sent us home with an appointment at the Glenrose Rehabilitation Hospital a few weeks later and Dr. Mehta’s strong message to return ASAP if anything seems not right.
 
A couple weeks later Cooper was fitted for his molding helmet. He would be required to wear this helmet 23 hours a day for approximately 4-5 months to reshape his skull. The process is quite amazing- a sleeve is placed over his head with tiny sensors and a machine is ran all around that picks up the sensors while a 4-D image of his head is recreated on the screen. There were about 12 pre-set patterns to select from and we choose a cute construction themed covering.
 
  
So flippin’ cute!!

 

About a week later we had our first visit with Tania from peds rehab. We would spend a reasonable amount of time with her over the upcoming months and she was absolutely terrific with Cooper and educating me how to make temporary fixes at home. Tania wasn’t happy with how the initial helmet turned out so had us go back to the Glenrose to get a second scan and a new helmet made up. The second time the helmet style was altered from a two-piece elastic held to a one-piece Velcro secured- which I personally appreciated as the screws kept getting caught in my hair while I was burping him.
The two helmets
We made the most of his helmet wearing experience- dressed him up as a hockey player for Halloween and had handmade hats/toques created to fit around the helmet. It was astonishing how many people would come up to you not to ask why/how, but acknowledge how adorable they looked or that their child wore a helmet too. I did find we had a few modifications to our everyday living with the helmet- Babywearing was a huge one, the carrier I had didn’t support his weak neck as well as it would have without a helmet, so we bought a different style with a hood. Those younger weeks in the car seat and swing I would put something behind his back to open his chest cavity/airway- but these were all minor adjustments. But I caution you to the smell… the best comparison I can provide is a well used pair of hockey gloves.
First day with the helmet

 

 
I’m a hockey player!

 

 
It was four months after Cooper began wearing the helmet that we had a follow up with Dr. Mehta- and he felt confident that the circular percentage of his skull was at the point of discontinuing the helmet. We called this ‘Helmet Graduation Day’, but because it was a cold winter day- he still had to wear it for the rest of the day because his toque was too big without it!
Since then Cooper sees Dr. Mehta annually to monitor the progression and ensure no complications are arising. 2 years after surgery he still has a soft spot that will continue to remain for years. At our last appointment a few weeks ago, we were told that he will have a CT Scan around 5 years of age just to ensure that there is no repeat fusion and then we should be good.
Since his surgery and rehabilitation, we have connected with the Neurosurgery Kids Fund with the Stollery Children’s Foundation which provides amazing support, events and opportunities for affected children in various capacities. We are a member of the NKF Community and invite you to check out the page and get involved.

Cranio… What???!! Part I

There are few memories in our lives where every blurry detail is as vivid as the day it happened. As is the story of Cooper’s condition when he was an infant. Many of our close friends and family know the details of Cooper’s surgery and rehab- but as I was recently approached by a family preparing to endure this exact journey, I felt it was appropriate to share his diagnosis, treatment and rehabilitation.  

Just a couple days old

 

When Cooper was born we knew his head wasn’t beautifully round like Max’s was- but because Max was a cesarean we really didn’t have anything to compare it to and the Doctors nor nurses made any mention so we assumed it would just round out.
We were seeing our chiropractor when he was about 4 weeks old and she had alerted me that we needed to see our MD about his skull. Looking back, Dr. Joelle expressed just the right amount of concern- enough to know that it was important that I discussed it with our family Doctor, but not too the point where she had me panicked. Weeks later I would break down in her office and she would support me in way that a mother, health care professional and friend all rolled into one could only do. And for that (along with alerting me to his condition at an early stage) I will be eternally grateful.
When we went to our family Doctor for Cooper’s 6-week checkup, I casually mentioned that his head seemed oddly shaped. I recall seeing him assess his head then informing us we should see a paediatrician- this wasn’t alarming as our Doctor is quick to refer out when something is out of his knowledge. What was alarming was his insistence that we see one promptly (a 3-4 month wait is generally the normal, not 3-4 days). That’s when I knew something was askew.
Up until that point I really wasn’t concerned or even considered that something would be seriously wrong- but that night I spent hours on Google. Almost all of my searches lead me to a condition called craniosynostosis– where the sutures of a baby’s skull prematurely fuse together. If untreated, the soft spots close and the skull grows abnormally and can emit pressure on the brain and cause many accompanying issues including permanent damage.
 
I went to our paediatricians appointment with a fairly certain diagnosis in mind- while I was unsure of the treatment and future, at least I was prepared in this department. What I was not prepared for was his frantic call to the hospital to get a rush CT Scan for potential swelling in the brain. In that very moment, I lost all emotional control and sat in the truck- too paralyzed to drive 100 yards to the hospital. And I cried and I openly prayed. I didn’t really know what I was praying for or recall who I was even praying to- but it was the first time in a very long time I just let go of it all. Somehow in the midst of it all I managed to call Paul and relayed that we were being rushed for a CT Scan then instructed to go straight back to the paediatricians office. (I don’t actually recall this conversation). This was, as far as I’ve ever known, the one and only time that he’s dropped everything at a site and was on route to Red Deer to deal with the unknown.
We were able to get a readable CT Scan done fairly quickly considering Cooper was 6 weeks old and not permitted to move a single muscle to get a clear image. Returning to our paediatricians office, I was a reckless bomb waiting to explode- and the longer we waited, the more scenarios played in my head. After a teleconference to the Stollery, the radiologist confined that it was a sagittal fusion, and craniosynostosis. Tears of relief flooded my eyes as he completed another referral, this time to a paediatric neurosurgeon.
After receiving an actual diagnosis and to prepare for our first consult- I googled, networked, surveyed and read the best and worst until felt prepared enough to hold myself together during that appointment. I had pages of questions ready to ask ranging from genetics to the protocol at the Stollery Children’s Hospital- because somehow knowledge makes it easier to cope.
Dr. Mehta was absolutely wonderful- while he was surprised that I had been able to network with a local family that had undergone the exact same procedure, he was very thorough in explaining the process, risk and outcome. Because he was diagnosed at the age he was, we were explained that the procedure could be done endoscopically, and only two incisions would be needed on his head to remove the necessary bones. The fusion itself was going to be removed, as would additional slits on each side of the skull to allow for proper growth. We left that appointment and felt comfortable knowing Cooper would be in his hands and care
2 days before surgery


 
See Part II- the procedure and rehabilitation Cranio… What??!! Part II