I thought maybe it was time to sit down and write about Kason and his diagnosis of sagittal craniosynostosis. As a new mom I had a vision in my head of what everything would be like once my baby was born. Well that vision was shattered about six weeks after Kason was born. At six weeks old Kason was diagnosed with a condition called sagittal craniosynostosis. Unlike adults, babies have seven plates that make up their skulls. These plates are separated with sutures that eventually fuse together around age 2, to create the skull. Babies heads are made this way so that they can easily pass through the birth canal at birth and so that their brains can grow. The suture on the top of Kason's head had already begun to fuse.The fusion cannot happen this early because a baby's brain is rapidly growing. In the first 9 weeks their little brains double in size. If the plates are fused together, then it makes it difficult for the brain grow, causing pressure on the brain, and also causing the babies head to take on a deformed shape. When Kason was born his head looked perfectly normal, nobody noticed a thing. Fast forward six weeks (and remember the part about babies brain doubling in size in the first 9 weeks) and Kason had a very elongated head with a ridge running along the top. The top of his head was more of an oval than a circle. The back of Kason's head was longer than most babies (he looked like he had a permanent cone head.) Kason has so much thick blonde hair that it took us awhile to notice it, and even then we just thought he was still a bit cone-headed from the birth. We later found out that the fusion probably began to happen while in the womb.  My sweet mother-in-law who used to work as a Maternal Newborn Nurse noticed that something wasn't quite right with Kason's head. She thought we should have the baby's doctor check it out. When we took Kason to the doctor, he felt that something was off as well, but he had never had a patient with this kind of condition. He said he was going to get us a consult with Primary Children's Medical Center.  

We waited a few days and still we had not heard from him or the hospital. We were anxious to find out if Kason had craniosynostosis or not. We have a family friend who was able to put us in touch with the head of pediatrics at PCMC.  The doctor said he would be happy to diagnose Kason if he had x-rays of Kason's head. We decided not to wait around anymore and ended up ordering our own x-rays for Kason through Kason's primary care doctor. Within the hour of emailing the x-rays up to PCMC we got a phone call from the doctor saying Kason had sagittal craniosynostosis. That was the moment when my vision of how life would be with our sweet baby shattered. We knew from our own research that our baby would have to have head surgery and wear a helmet for months, or even up to a year. That day I felt so upset and sad, I just sat and snuggled Kason for hours and kissed his head. I was upset that in all of the babies born, it was me and my baby that had to go through this. I found myself angry that it was us that was given this trial. I was upset that Jake and I were first time parents, we have no clue what we are doing in raising a baby, let alone a baby who has craniosynostosis. I found myself looking a my friend's babies that were born around the same time that Kason was and envying their perfect round heads. I desperately wished that my baby had a round head like that. 

We were put in touch with Dr. Faizi Siddiqi who specializes in cleft pallets and craniosynostosis. Once again, within the hour, Dr. Siddiqi got in touch with us and set up a consult with him for the following week.
The next Tuesday we met with Dr. Siddiqi and Dr. Riva-Cambrin who is a neurosurgeon. They explained Kason's condition  and told us that we caught it in perfect time. With Kason being only 7 weeks old, they could perform an endoscopic surgery that would be less invasive and a quicker recovery time. They explained that the ideal time to perform this surgery would be when Kason is 8-10 weeks old. They said if he was older than that, they would have had to wait until he was 9 months old and perform a total skull reconstruction surgery that would take 5-6 hours. We were extremely blessed in that we discovered in time and Kason would be able to have the endoscopic surgery. They scheduled surgery for two weeks later on Tuesday, Oct. 22. Through those two weeks I was anxious and nervous for Kason to have to go through such a major surgery at such a young age. Two weeks later we headed back up north for the surgery. 

On Monday morning we drove to PCMC so that Kason could have some blood work done before the surgery. Afterwards we had an appointment with the company that would make Kason's helmet that he would have to wear called Shields. They scanned Kason's head so they could see the dimensions before the surgery. By the time Kason is completely done with wearing the helmet the width of his head should be 80% of it's length. The scan showed Kason's percentage at 70%.  That night we had to quit feeding Kason at midnight and by 5:00 the next morning he was starving. We had to be to PCMC on Tuesday morning by 6:00 so we could get registered for the surgery that would take place at 7:30. It was hard because Kason was hungry and screaming and we couldn't do anything about it. About 7:00 I was able to get Kason to fall asleep. We met with the two surgeons who would perform the surgery at 7:20. We then met with the anesthesiologist who would be putting Kason to sleep. While visiting with the anesthesiologist we found out that this was not a routine procedure, like we had thought. We were told that this was major brain surgery. Kason would have an IV in his foot and in his head. He would also have one in his artery on his wrist. He was also going to have a nose tube and a mouth tube. All of these tubes were for "just in case" something went wrong. It was then that I realized that we were sending our baby in for a major surgery that he may not come back from.

 At exactly 7:30 we walked with the anesthesiologist down a hallway and he stopped at a set of double doors and he told us that this is where he would take the baby with him and we would go to the waiting room. I handed my sweet baby boy over and began walking to the waiting room with Jake. It was hard to stop the tears that began to come after handing him over. It was hard not knowing if everything would be okay and if we would see Kason again. It was then that I remembered Kason's blessing and that Jake had blessed him to be healthy so that he could accomplish the things in this life that he needed to. I also remembered the blessing Jake had given the night before, and I was comforted knowing that Kason had two priesthood blessings, as well as many prayers from family. I knew that he would be okay and we would see him again. We sat in the waiting room for two hours while the surgery was performed. At 9:00 we received an update from the operating room telling us that everything was going well and he would be done in 45 mins. At 9:30 Dr. Siddiqi and Dr. Riva-Cambrin came and told us that Kason was out of surgery and that he did great. They said out of the 200 surgeries they have performed of this nature, there was less blood than there had ever been. They said Kason had hardly bled at all! Also, the material that covers his brain was not ripped at all either. Usually that is ripped and the neurosurgeon has to fix it, but not on Kason! I knew that Kason was being watched over. 

At 10:15 I was allowed to go and see Kason in the recovery room. (They only allowed one parent to be with him at the time.) I knew that this was going to be another hard part for me. I didn't want to see my baby in pain with a bunch of monitors and tubes hooked up to him. I thought I was prepared for what I was going to see, but I wasn't. Once again, I couldn't stop the tears as I looked at Kason in the bed with all of the tubes and monitors. His eyes were glazed over from the anesthesia and I could tell he was in pain and wondering why he was suddenly in pain. His head was orange from the iodine and he had dried blood on his face from the nose tube that they had pulled out after surgery. He suddenly began to scream and cry. His little cry was so hoarse from the throat tube they had pulled out that I hardly recognized his cry. The pain medication they gave him wasn't working and he was crying out in pain, I tried to hold him and feed him, but that did little to comfort him. Eventually, they ordered stronger pain killers for him and that settled him down enough so he could sleep. We then met Jake in the hallway and together we walked up to a private room we would be staying in. I was so glad to have Jake at my side again to help me through the rough time. When Jake saw Kason for the first time, I could tell he was struggling as well. As parents, we never expected to have to see our baby like that. Once we were in the room, I sat and held Kason for an hour or so while he slept, I eventually put him in his bed because every move I made would wake him up and he would cry in pain. Kason slept most of that day and night. 

By the next day, he was beginning to be more like himself, he was smiling and cooing just like he used to. He was even eating the same amount that he used to as well. It was so good to see him smiling again. Babies are so resilient! Yesterday, we took him back to Shields so they could scan his head again, his percentage was up to 74%! The surgery had already improved the shape of his head. Earlier this week we picked up his helmet and we are now breaking it in. By Saturday he will have to wear 23/7 for six months. It is definitely an adjustment! We had just settled into our normal routine post-surgery, and now it is all upset again trying to get used to the helmet. It is so top heavy, Kason has a hard time holding his head up. (He was so close to being able to hold it on his own without it wobbling before the helmet!) Now it is like he is a little newborn again learning to hold it on his own. 

I am not going to say just yet that I am grateful for this trial in our lives. I haven't quite reached that point yet, as we are still making weekly trips up north, and adjusting to this helmet, but I do know that we were given this trial for reason. We are supposed to learn and grow from it, and I know that Heavenly Father has been with us every step of the way. There have been many prayers said in Kason's behalf in the last 5 weeks. I know that one day when I am sending Kason off to his first day of first grade, this will be a small bump in the road that is long gone, and hopefully long forgotten, Kason will have a perfectly shaped head, and he will be a perfectly normal boy. This trial is affecting our lives right now, but in six months we will be done with it, and life will keep going. In my eyes, even with a helmet on, Kason is perfect. He is still his happy, smiley, bright-eyed, interactive, talkative, strong interactive self. I love him so much and I am so grateful he was sent to our family. 

Kason a half an hour after surgery

He slept the day away

Mom holding him right after the surgery

Getting discharged from the hospital....yay!

Mom and Kason playing a few days after surgery. We had to keep his head elevated to help with the swelling.

First time wearing his helmet.