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.
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.
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.
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.
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.
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.