From suspicion, to diagnosis, to surgery, all in a matter of 20 days, we are officially on the other side of sagittal synostosis. It’s been a stressful and emotional whirlwind of a last few weeks and I feel like the dust is finally starting to settle. Maybe.
I managed to keep myself fairly distracted before surgery, mostly because we were so busy. When we met with the neurosurgeon and the Nurse Practitioner (NP) on the Monday 8 days before his surgery, I was blown out of the water that it was going to happen so soon. I was anticipating finally being able to do something fun this summer by going on our annual trip to BC. Days at the lake, playing in the sand, eating fresh fruit and doing all the things that we love to do — our first vacation as a family of 5, eager and excited to include Jonathan this year. But the night before surgery, it hit me like a ton of bricks. It took every ounce of strength and courage I had to not want to pack up and go back home and ignore his narrow-shaped head.
He was first on the operating room slate for surgery on Tuesday July 19 at 7:20 AM. This meant that he had to stop eating (drinking breast milk) at 3:20 AM. I worried because Jonathan had been sleeping 10-11 hours through the night and I didn’t want to wake him up to eat and worry about entertaining him and distracting him at 3:30 in the morning until 5:30 when we had to leave. It just so happened because of such a busy day Jonathan decided it was bedtime at 6:30 PM and it couldn’t have worked out more perfect. I set my alarm and gently picked him up from his slumber at 3:10 AM and fed him while he was asleep. I snuggled him in my arms for 45 minutes and gently placed him back down without a peep. I had to wake him up to change his diaper and put him in his car seat so we could leave for the hospital to be there fro pre-op at 6:00 AM.
He smiled and he wouldn’t stop. Our night couldn’t have gone better leading up to surgery and this eased my fears and worries greatly. We arrived to pre-op and got him changed into the cutest little gown you ever saw. All the while he remained happy and taking in all of his surroundings. I wasn’t terribly worried about him wanting to eat because he had only 3 hours prior and he seems to be able to be distracted quite easily. He started to fuss a bit so I held him upright on my chest and walked/bounced around. It wasn’t long before he fell asleep and we were walked over to the OR waiting room. We talked with anesthesia and our surgeon and handed our baby boy off to the OR nurse as he was peacefully sleeping. I then turned to my husband and we hugged in a tight embrace and didn’t say anything. We just cried together and I prayed. I prayed and I prayed for God’s provision and protection for our baby son.
Even though I knew he was in the best hands possible, handing him over to the nurse was the hardest thing I’ve ever had to do in my life. Waiting, as we soon were to find out, was the second hardest thing. His surgery was about an hour long and it went really well. But before the surgery, there are lines to be placed — two intravenous lines and an arterial line for monitoring — and positioning on the OR table among other things. His OR was booked for 2.5 hours and it took that, plus time in the recovery room.
Post-Op
The NP came to his room while we waited and told us the surgery went very well. She told us the anesthetist preemptively gave him a blood transfusion before the surgery even started, which isn’t common practice, from what I’ve been told — especially because he didn’t bleed during surgery, she described it as very “dry”. I wasn’t terribly thrilled to hear about the blood transfusion, if I’m being honest, but I also know it’s a safe procedure and was all the more eager to have him back in my arms. At least he would have been ready had a bleed occurred I suppose.
At 11:30 Jonathan was brought up to the Intermediate Care Environment (ICE) room on the pediatric surgery unit and we were happy to be reunited with our baby. The ICE room is like a step-down ICU with more monitoring than on the floor and 2:1 patient care per nurse. He woke up well in the recovery room, but the nurses could tell he just needed some mama love. I tried to nurse him but he wasn’t quite alert enough, but we just snuggled among the monitor wires and the IVs in his feet. He had two large white bandages covering his head with just a tiny bit of blood that had soaked through. He didn’t have any swelling yet and I was hopeful that with his less-invasive surgery he would have little to none and hopefully not much pain.
The first 14 hours post-op were hard because Jonathan was whimpering and very restless. I hoped he would just sleep the anesthesia off, but he was fussy. He wouldn’t settle into breastfeeding either and kept having large and very loud gulps, I assume from throat irritation from being intubated and the prone-position he had to be in for surgery. By 10:00 PM he finally had a good nursing session and just wanted to be held by me, which I was happy to accommodate. I tried to keep his head elevated as much as possible because I could see swelling starting to happen and the fluids pooling on whatever side of his face he was laying on. By 2:00 AM he was finally settled enough that I could put him in his car seat and lay down myself for some much needed rest — I had been up since 3:00 AM surgery day and just dozed off and on as Jonathan was in my arms between his fussing and the 3 other babies in the ICE room.
Swelling peaked in the afternoon of post-op day 1 and I wasn’t anticipating how swollen he would be. Thankfully he always had 1 eye not swollen and could open the other eye a slit so it never bothered him – it just shocked me! I joked to my sister-in-law that his face was so perfectly round he looked like an emoji! As soon as he made eye contact with me and smiled I felt a million times better. My baby was still in there and it validated everything we had just put him through.
On day 2 post-op we were moved into a regular room and boy was that nice! More space and less noise. Jonathan had a great nap which allowed me to eat some lunch and just rest and watch a bit of HGTV. His heart rate was quite high while resting at 170-180, but he didn’t have a fever, wasn’t dehydrated and didn’t seem to be in pain. The doctors weren’t worried so I tried not be worried too. Jonathan was very overtired from this whole ordeal that day, so luckily I brought my Ergo carrier and put him in there and walked around the hospital until he fell asleep. He wasn’t fussy, just restless, so I’m glad that worked and he slept 7 hours that night in his car seat. I begged his nurse to not wake him for his Tylenol and to just give him his IV Toradol (like Advil) instead.
That morning I woke him up for his Tylenol dose and for his nursing assessment and then he had a nice, long 3 hour nap in his car seat. Around lunch time the NP came in and we talked about being discharged which I was very happy to hear and jumped on board. We were going to stay in the city one more night anyway, just in case something should arise overnight, and then go home in the morning. Perhaps one of the perks of being an RN? I’m not sure but I was glad to bust out of there!
Sleep has not been our friend post-op and has been the hardest thing to deal with. He had been sleeping through the night 9-11 hours for a good few weeks and he has definitely paid the price of not being well-rested, and so have I! I truly don’t think that this surgery was that painful for him, I imagine the swelling was very uncomfortable, but the lack of sleep is what really got him. I’d get him sleeping and attempt to lay him down in his DockATot he loves so much, but he’d immediately start crying and fussing. It was hard and challenging, but today on post-op day 5 he’s finally turned a corner. He slept 7 hours last night and went down beautifully for a nap today. “This too shall pass” as they say, and it really is true, but it’s hard in the mean time.
Coming Home
Before we knew Jonathan was officially going to have surgery, I was talking with my SIL Laura about having it done in Calgary vs. Edmonton, if I had a choice. She urged me to think about having it done in Calgary because that’s where her/my in-law family is and most importantly Jay and the big boys. I told her I felt like I needed to go “home” to have surgery, as I’m from Edmonton and I worked in that OR and on that pediatric surgery floor — I felt so strongly it needed to be done there. I have nothing bad to say about Calgary, but I couldn’t be more grateful that we had Jonathan’s surgery in Edmonton. As soon as the NP saw me in clinic the week before his surgery and said “welcome home!“, I knew we were having it done there.
It was comforting beyond words to be home and to see familiar faces all along the way. From the NP and our amazing neurosurgeon whom I used to work with in the OR, to a nurse in pre-admission clinic, my friend in the booking office, his recovery room nurse that I used to work alongside with, his night nurse that I also used to work with as our nurse on the first night, and my dear sweet “Nurse Mafia” friends that came to visit me, Jay and Jonathan — I tear up every time I think about how blessed we are that we had this surgery done at the Stollery. Without our visits daily from our dear, sweet friends I’m not sure we could have gotten through it so easily.
This surgery (I feel) was harder on me than it seemed to be on Jonathan, not to take anything way from this major surgery he had. It also was of immeasurable comfort having my brother bring me lunch both days and coming to visit me and Jonathan in the hospital. I know my brother isn’t the biggest fan of hospitals but he did it for us and I’m so thankful. I felt so loved and so comforted and supported during our stay and I know in my heart it was no coincidence he was working a couple of blocks away from the hospital last week. It made the hardest thing I’ve ever had to do become not-so-bad after all.
What’s Next?
The NP told us that surgery fixes about 20% of the problem and the helmet will fix the other 80%. She also described him that surgically he was a mild case and “overall” in the world of craniosynostosis he was mild-moderate. I immediately see post-op that the pinching at his temples is gone and perhaps a little bit of his bossed forehead, but its definitely still there. The surgeon cut down and “released” his skull down to his ears on both sides to make more room for his brain to grow and skull to be shaped properly. We have an appointment to see him in clinic on August 15 and will be fitted for his helmet that afternoon and receive it the following day. From what I’ve read from other cranio kids, they are eased into wearing their helmet on a specific schedule — 1 hour on, 1 hour off, etc. and we work up to wearing the helmet 23 hours a day for an estimated 4-5 months. So hopefully in early 2017 the helmet and this sagittal synostosis journey will be a thing of the past.
Before, During & After Photos
Here’s a glimpse at how far we’ve come already.
10 weeks old pre-op:
12 weeks old, 5 days post-op:
Thank You
Thank you to everyone who has provided Jonathan with care at the Stollery. I say this without bias (even though I used to work there), but you are all angels on earth and provided us with the best possible care with smiles on your faces always. To our family and friends and everyone on social media that has prayed for us, has sent us kind words both publicly and privately — thank you. I have read every single comment and email sent to us, though it is impossible to reply to them all. Knowing how many people care about Jonathan and his journey also provides so much comfort.
For more updates please follow Jonathan’s Cranio Journey on Facebook.
With love and thanks,
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