My son has craniosynostosis...and he kicked its butt!

"While we try to teach our children all about life, our children teach us what life is all about."
Friday morning, May 27th was Owen's surgery to correct his right coronal craniosynostosis. The surgery almost didn't happen. The morning before surgery Owen woke up with a 102 degree fever and an ear infection in his left ear.

I noticed pulling and tugging on his ear the few days prior but there were no symptoms present of an ear infection. My paranoia got the better of me and we went to Urgent Care Tuesday night. Doc there said his ear was fine. Wednesday he was okay and then bam - Thursday he has an infection and a fever. When I felt how warm he was my heart immediately started to race and I got so upset. As terrified as I was to go through with the surgery, I didn't want to cancel it either.

As soon as the office of his surgeon's opened, I called them and let them know what was going on. They said to get him into the pediatrician immediately and get him started on antibiotics. If the fever broke before morning, surgery would still be a go. I called the pediatrician right away, explained the urgency and we had an appointment for 10 am.

We get to the appointment and his new pediatrician (we switched from the one he had since he was born - we felt he neglected the situation with his craniosynostosis) diagnosed his ear infection, gave us amoxicillin and sent us home. His fever had already gone down a degree all on its own without medicine.

After we stopped at the pharmacy and got his meds filled, we began round-the-clock tylenol and antibiotics. I gave him a cool bath, gave him liquids to keep him hydrated. We were doing anything and everything to get this fever down so surgery wouldn't be canceled.

As of Midnight he hasn't allowed any more formula or meds, so he got his final bottle and doses of meds before surgery. He was allowed to have gatorade or water until 5 am, so we woke up around 4 to start getting ready for the hospital and his temp was perfect, it was actually under the normal range. We got dressed and ready and left for the hospital at 5:20.

Surgery was scheduled for 8 am but we had to arrive 2 hours early to allow for all of the pre-op exams, etc. I kept touching him every minute it felt like just to make sure he wasn't too hot. We were called back shortly after we arrived, we got him changed into a gown and the nurses started examining him. His temp was great, still under the normal range and he was acting excellent. We didn't hide the infection or fever from anyone and the one nurse tried saying anesthesiology would have to clear him and if he had a fever the day before, they might not allow him to get the procedure done.

After we did the pre-op exams we had to go to another room to see a nurse practitioner and go over some more pre-surgery information. My Grandma and Adam's Dad showed up and were able to come back and see him. My Dad and Step-Mom also came up and got to see him before they took him back. He finally fell asleep in Daddy's arms. He was so tired after being up so early. Anesthesiology came by and said they were going to clear him for surgery. The Doctor told us "I have two boys of my own and I take care of each and every one of my patients like they're my own." I lost it when he said that. That was all the confirmation I needed right there and I knew in my heart my little boy would be okay.

We were holding him and rocking him when a Nurse came in and said to give him hugs and kisses because it was time to take him back. That was the hardest thing I ever had to do - When we buried Audrey, I knew she was gone and there was no chance of her coming back. Handing Owen over to the Nurse and not being 100% sure I'd ever see him again, it broke my heart into a million pieces.

After the Nurse took Owen back for surgery my Husband and I had to take a minute in the room to gain our composure before we went to the waiting room. Our family was out there waiting for us and we just wanted to dry our eyes a little before we went out there.

The surgeon's told us that surgery would take 4-5 hours to complete. We went out to the waiting room and I thought the wait was going to be agonizing and long but thanks to the amazing support system we had there with us, time flew by. We talked about old times, told funny stories and I was actually laughing. I couldn't believe it. My son was right down the hallway in the middle of a major head surgery and I was actually smiling and laughing. About 10:20 am or so the Neurosurgeon came out and said things were going very well, Owen was breathing excellently and the Plastic surgeon was starting his cuts and doing his part of the surgery now. He said Owen had another hour and a half to two hours left to go.

Around 12:50 pm the plastic surgeon and his assistant (who I have to say I absolutely adore. She was my go to woman with every question and concern I had during this time) came walking over to us. His assistant had a huge smile on her face and right then and there I knew my boy was okay and my heart could finally relax. I hugged her and thanked her for what she did. They both filled us in on the procedure saying Owen did great and he did require the transfusion like expected and he was now being moved to recovery. They told us it would be another 20 minutes or so before we could see him. The hospital gave us a little pager to hold and said it would go off whenever it was our turn to go see him.

When the pager finally went off, my heart started pounding really hard. I was so excited to see him, but at the same time, I was nervous. I was afraid of what he'd look like. When we got back to recovery and I saw him, it was like this huge weight was lifted off my shoulders. My Husband was very emotional and crying and I was like the exact opposite - I was relieved and happy. Yes, it broke my heart to see my son like that but I was relieved he was ALIVE and he made it through the surgery with no complications. We stayed with him while he was in recovery and then shortly after he was moved to the PICU.

Once we arrived in the PICU our family was able to come in two at a time to see him. My Dad and Step-Mom came back first and as soon as my Dad saw him, he started to cry. I grabbed my Dad and hugged him and told him everything is okay now - the worst part of this is over.

Owen was very groggy and out of it for quite awhile. He was receiving tylenol and motrin and low doses of morphine to help with his pain. When I finally got to hold him, I was just so relieved to have him back in my arms. We did have a little scary moment after he woke up. His mouth was very dry and you could tell he was becoming agitated. We were allowed to give him pedialyte and as the nurse was preparing the bottle, he got really upset and ripped the art line out of his arm. He had a line that was in an artery in his arm and that's where they were drawing blood for his labs from. Obviously when an artery bleeds - that isn't good. Blood was all over his gown, all over me and the floor. The Nurse reacted very quickly though and wrapped his arm right away and everything was fine. I was so nervous to hold him after that. That just really scared me.

We laid him back down for awhile and he slept off and on throughout the night. He woke up whenever the nurses came in to do their checks but overall, he did remarkably well. Saturday was just a day of rest and observation. He was moved out of the PICU and upstairs to the neurosurgery/plastics floor.

By mid evening Saturday he was becoming quite frustrated with his head wrapping and kept pulling at it and crying. My Husband being the amazing Dad he is held Owen and sang to him and that definitely helped to calm him down. I can only imagine how scary it is to wake up with your head feeling 10x larger than your body, being in pain and not being able to see. My Husband is a rock and he made sure his baby boy was as comfortable as possible.

Saturday night Owen was definitely more restless than Friday night. The Nurses would come in to do their vital checks and he'd wake up. Adam and Addison got a room at the Ronald McDonald House and they went there to spend the night while I stayed with Owen. It was like having a newborn all over again with how often he was awake, but that was more than okay. Anything for my baby boy.

This morning we started hearing talk about us going home. I was extremely nervous at the idea of him going home. His head hadn't been unwrapped yet and his eyes were still very swollen. Everyone assured me he would be okay and his eyes would open very soon. His neurosurgeon came by and evaluated him and said by this afternoon we could go home. They took the wrapping off of his head and that was the first time I really had an "Oh my God, what did I let them do to him?" kind of moment. I immediately cried. I'm thankful Adam was holding him when they removed the wrapping because I wanted to throw up.

We waited around a little while longer and then his plastic surgeon came by to see him as well. He assured us just like the neurosurgeon and nurses did that he was okay, his scar looked great and the swelling always gets worse before it gets better. He was also okay with sending us home and he left the room to sign the discharge papers.

We started packing our things and Adam was taking them out to the car and then it was just waiting after that. We got some prescriptions for his pain meds, some cream to put on his head and his care instructions for once we got home. It was like leaving the hospital as a first time Mom with a newborn baby, that's how nervous I was.

I am still amazed that two days after major head surgery we were released from the hospital. I joked with his nurse before we left when she asked if we had any questions, I said "Can we take you home with us?" She was so great - everyone at Akron Children's was amazing. We feel so blessed and fortunate to have such an amazing hospital that is just minutes from our house.

We are so thankful for everyone's love and support. Our little man is a true warrior. He's already smiling, laughing, trying to climb, doing his army crawl. He's basically back to normal. Although, to me, he was always normal. He just needed a little extra work to make him more perfect than he already was. <3

Cranio... what?

That sweet, adorable, amazing little boy is my son Owen Hunter. He was born on September 21st, 2010. The day he was born, it was like the world made sense again.

You see, 16 months before he was born I lost a daughter in my 5th month of my pregnancy. That day it was like the world crashed down around me and nothing in this world made sense or mattered, except for my oldest daughter and husband. They were all that I cared about anymore.

In February 2010 we learned we were expecting baby #3. The day I learned I was pregnant I went in for a regular OB appointment and found out I had a positive pregnancy test. To say I was shocked was an understatement. That pregnancy was very emotionally draining for me. After losing my daughter not even a year before, I was beyond fearful it would happen again.

On September 21st, 2010 that little boy came into this world and the very second our eyes met, it felt like I could finally put the broken pieces of my heart back together. His eyes met mine and we just stared at each other. Most babies come out crying and screaming, not my little man. He let out a little cry but he was so calm, so peaceful. I let out tears of joy as I heard those sweet cries that were robbed from my husband and I just 16 short months before.

I remember when he was born Doctors making a few comments about his one eye drooping a little more than the other one. They said it was probably just from being in the birth canal and would fix itself in time. Before we were discharged the hospital pediatrician said something that never quite settled right with me - she told me to make sure I take Owen to the pediatrician to get his head checked and to make sure the bones were growing like they should. I found it odd because no one ever said that to me when my oldest was born. But, at that time, I felt like none of that mattered - he was alive, perfect, healthy - anything else was not even an issue at that time.

As time went on, and as he started to grow, I noticed a difference in the shape of his head. I noticed a little skull "bump" on the top of his forehead and I noticed the right side of his forehead was flattened and when you looked down at him, it was asymmetrical. My gut told me something wasn't right but I knew babies bones shifted and I told myself it would all fix itself.

By the time his first well baby visit came around at 2 months old, it was still there. The same flattened forehead. I brought it up to the pediatrician who also noticed his eye shape and wanted us to see an eye doctor, and she told me to give it some time and to see how things developed but in a few months we could see a neurosurgeon and find out if anything is wrong.

More time went on and we started to notice a head tilt. Right before Owen turned 4 months old we went to our first appointment with a physical therapist to treat torticollis. I kept bringing the forehead issue up to his pediatrician (the one at his 2 month appointment was not his regular Doc) and all he told us was give it time, do sleep positioning, etc... and Owen's head wound round out more and he would grow hair to cover his flattened forehead. That answer never settled right in my heart, but I decided to give it more time.

Finally at 6 months old, I couldn't take it anymore. At the beginning of April, my husband and I agreed we were going to push for a referral to a specialist. We called and made the appointment - April 20th at 3 pm.

That day I was a nervous wreck. Our pediatrician said it was plagiocephaly, but I'd be been reading online for months about both plagiocephaly and craniosynostosis and my heart, my gut was telling me we'd get the news we were dreading........ our sweet boy has craniosynostosis. I couldn't even pronounce the word but I knew it was what he had. I just knew.

When we took him to the appointment, the Doctor's assistant came in first and said he wasn't a typical "plagio kid" but said she wasn't sure if it was craniosynostosis either. She left the room to get the neurosurgeon and while she was gone, my husband smiled at me thinking we'd hear the news we wanted to hear, a helmet would fix this and he'd be fine in a few months.

Then the neurosurgeon came in the room, he picked up our son and held him for no more than 30 seconds and confirmed our worst fear - right coronal craniosynostosis. He started talking all of this medical talk and saying "Surgery" and "CT scan..." and it was all a huge blur to me.

I held my son on my lap and he was just bouncing away, smiling, cooing, being the amazing little boy he is and all the while, I've got huge tears rolling down my face.

My heart told me all along it was craniosynostosis but I still cried, I was still blown away to actually hear what we were dealing with. We scheduled a CT scan for the following week to get a 100% certain diagnosis and then we could move on to scheduling an appointment with the plastic surgeon and then surgery.

The scan for the next week ended up being re-scheduled. On top of these issues with his skull, Owen is also asthmatic and he caught a nasty case of croup and had a bad attack, so he was unable to be safely sedated. Waiting that week for that appointment was already emotionally draining enough but to then have to wait ANOTHER week, I was going crazy.

On May 4th we went back for our second attempt at his scan and it was successfully done. We had our first appointment with his plastic surgeon the following day, May 5th, which was also my stillborn daughter's second birthday. An already emotionally draining day to start off was intensified by his appointment and finally seeing the images of his scan.

Words can't express what it was like to see that image of his skull. The plastic surgeon confirmed 100% that the right coronal suture is completely fused. We saw the images and he pointed out the other open sutures and then showed us the right suture that is a completely shut part of his skull. It was amazing, heart breaking, etc.

After we left that appointment, we went to the hospital lab to get Owen's blood typed as well as mine and my husband's so we could find out who is his direct match so we could donate blood for his surgery.

That following Monday we got word from the neurosurgeon that we have a surgery date.... May 27th, 2011 at 8:30 am.

We are 8 days away from surgery. This month has been so crazy. Tomorrow is 1 month since his diagnosis and we'll be 1 week away from surgery. It feels like everything has happened so fast. I'm scared beyond words. I've shed so many tears over this.

A mother's love is unconditional. There is no doubt in that. There is nothing any of my kids could do that would ever make me stop loving them. There is no condition, disease, nothing that would ever make me love them less.

I look at Owen and, to me, he looks perfect. I know there is something wrong, but it doesn't change the way I feel about him. He's my son, my beautiful rainbow baby. He's such an amazing baby. I'm not just saying that because I'm his Mom. ;)

At almost 8 months old he army crawls like a champ, he's pulling himself to stand, he has a smile that lights up the world and definitely melts my heart. He gives the sweetest baby kisses, he laughs with his whole body, he loves his sister and thinks she's the funniest kid ever. He's a thumb sucker and any chance he gets, that thumb goes right into his mouth.

He's perfect. He's perfect and he has craniosynostosis.

I have never been more terrified of anything in my life than I have been of having something ever happen to my kids. My kids, all 3 of them, have given me joy beyond words, sadness I never knew could exist, and a healing of my heart that I never imagined I'd ever feel again. I've experienced every parents worst nightmare, I've lost a child and had to bury them. Now I'm facing the second worst thing a parent could face, I'm trusting my son's life in someone else's hands and I'm putting him through a major head surgery at 8 months old.

I created this blog for other families to read to help them feel less alone during a truly emotional and gut wrenching time and also to give our friends and family the chance to follow Owen's journey.

Thank you for reading this.