Today marks the 6th month anniversary of Kaitlynn's Craniosynostosis surgery. I was recently asked to put together her "story" for my family's reunion this comming fall. I'd never really sad down and wrote what really happened. It took me about 3 weeks of writting to get it all into words, and boy once I finally got it all out, I realized I needed to share this with you all on her 6th month post opp anniversary! Kaitlynn is an amazing little girl, and I thank God every day that he was able to bring her to us. He has given me strength through her, and has deepened my relationship with Joel. Through him, with him, we became stronger parents.
Enough of my saga, here's her story! (it's a bit long) Enjoy.
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Kaitlynn's Story: June 23, 2008
Kaitlynn was born on August 25, 2007 at 9:59am via c-section. Before I (Amanda) had gotten back to recovery, in our room, the nurse had noticed something was wrong with her skull; they couldn't feel a soft spot on the top of her head. We were told this news, and since she was born on a Saturday we had to wait to get any test run until Monday morning. This was the longest weekend of our lives, not knowing what was wrong with our precious little girl. I remember them coming in to get her early on Monday morning, Joel was still sleeping. The nurse came to get her to take her to radiology, for a CT scan, and about 2:00 that afternoon, they came to get her again for another scan that would show them more. We didn't get any answers until our wonderful Doctor came in to tell us what the specialist had said. I remember sitting there, and not even understanding what he said. It was such a blur, he kept talking, and I was hearing him, but I didn't understand a word of it. He wrote down the diagnosis: Craniosynostosis (cranio-sin-no-sa-toe-sis) ( Craniosynostosis is a birth defect of the brain characterized by the premature closure of one or more of the fibrous joints between the bones of the skull (called the cranial sutures) before brain growth is complete. )The nurses at the hospital were wonderful, and even brough in a computer so that we could research the condition via the internet. We spent that night crying, researching and calling family. Everyone wanted to know what it was, and we couldn't even really tell them, because we didn't know ourselves. All I wanted to do was research, research, research, but Joel didn't want to read anything on it, he just wanted to find out what the doctors said. Our Doctor was going to try to get us in touch with a Neurosurgen in Lincoln, that Joel's brothers had went to school with. We thought that would be the best option, but unfortunatly he was no longer doing the surgery because he didn't see enough cases. We then were refered to Childrens Hospital in Omaha. We were told when we left the hospital that someone would be in contatct with us from their office. They called a few days later, and set up the appointment two weeks later.
We then were headed to see a Neurosurgen in Omaha, just two short (long for us) weeks later. He looked at the scans and confirmed her diagnosis, and gave us that it was Sagittal synosis. I don't really remember much about that visit either other than them telling us what we already knew. Remember how I'd said I wanted to research...well I spent almost every day doing it! I wanted to know about it all. We were told that they do two types of surgerys, CVR (cranial vault reconstruction) and Endoscopic Crainectomny (less invasive). But we were told if we wanted to do the Endoscopic surgery she had to be under 6 weeks old. We were also told that it ususally fails, and it's not a good option, because a lot of times they end up doing the CVR months later because it doesn't work. So hearing this information we were planning for the big surgery (CVR). We were told we would be called about an appointment for a Craniofacial Clinic, where we would find out more about her surgery, meet her surgeons, and get everything started. BUT our clinic wasn't until the 29th of October. We were forced to wait 6 long weeks before we would find out when her surgery was. During that time our beloved Doctor passed away, just days before our 6 week post partum check up. Thankfully we found the other doctor that ours had been consulting with on Kaitlynn's condition. We then switched doctors and waited for our Craniofacial Clinic. Our clinc came, and both sets of grandparents came with us for support. It was great to have them there, they asked our surgeons questions I hadn't even thought of. We were told they would get the insurance settled and let us know on a date for surgery. We were looking at about 8-10 weeks before our surgery date, but they would call. We went home, and waited.
About the middle of November I got looking around on the internet for a support board, and a system of other parents going through what we'd gone through! I came across two boards that were of great support to me. There are moms all across the world that were going through what I was, they were doing the "waiting" game just like us. One of the boards had a place for you to contact other parents in your State. I figured why not, there probably isn't anyone from Nebraska. Lo and Behold, there was ONE name. So I sent an email and hoped for the best! A few days later I got an email back from woman, Susan, who's son had had the same cranio as Kaitlynn, and was now 8 years old. We emailed back and forth for a few days, and ended up exchanging phone numbers. She called one day, and I'd been doing some research on the internet of the types of surgery. At this point I was rethining our decision to do the CVR surgery. My phone call from Susan, just confirmed my thoughts. She went on to tell me their journey with Cranio. Their son was diagnosed at 5 months old, and they prayed and researched for a different option. They came across Dr. Jimenez and Dr. Barone, who were a husband and wife team doing a new less invasive proccedure at the University of Missouri. I had come across them once before in my research, but didn't know much more. After talking with Susan, I realized we had to do the Endoscopic Crainectomny. There was no other option in my mind.
I called our Neurosurgen in Omaha, and talked with his PA about it. She said she couldn't tell me much about it, but if she would talk with our NS, and get a recommendation from him of who he would recommend. She called me back two days later to tell me that he would recommend us to only one doctor, Dr. Jimenez. This was reasuring. I then went about contacting Dr. Jimenez, who is currently at the University of Texas Medical Center, in San Antonio, TX. I sent him copies of our CT scans, and pictures of Kaitlynn, along with all the paperwork for surgery. He then confirmed that yes she did have it, and he wanted us to do surgery as soon as December 5th, it was around Thanksgiving time. Joel and I both decided we wanted to get through Christmas first, and then we would do the surgery. Jimenez does surgery only once a month on the first Thursday of the month. This set us up for the 10th of January as a surgery date.
Her surgery date couldn't come fast enough. We decided to drive down for her surgery. We headed out on a Tuesday morning, and made it that evening. Kaitlynn did so great on the drive down, and was a perfect little one the whole way. We then had our appointment with Dr. Jimenez on Wed. We had all of our questions answered, and were told what to expect. We were on our way to surgery the next day. We were told to be at the hospital by 7 am, and Kaitlynn was not to have anything to eat after 5am, her surgery was scheduled for 9am. They were running behind, when we got there. Her surgery didn't get started until 12:56, and only lasted 56 minutes. She only lost 2 Tablespoons of blood, and didn't require a blood transfusion. We got to go in and see her about 2:30 or so. She did great, and looked so much different already. When we finally got to hold her we noticed the immediate difference in her head shape. She did great over night, and was realeased at 10am the next morning. Not even 24 hours in the PICU (pediatric intensive care unit). She was a completly different baby, happier, not spitting up as much, and over all just more plesant. We were then fitted for a helmet to reshape her head. We had our post op. appointment 6 days later, and on our way home.
Kaitlynn now is wearing a helmet 23 hours a day, and will be in it for a year to 18 months from her surgery date. She outgrows her helmets, and is already on her 3rd helmet. We need new ones every 3-4 months, and travel to Texas each time for new ones. Kaitlynn is such a big girl, and has just learned to crawl. She was a little bit behind on her development, but is now right on track and growing so quickly. We're hoping to be done with helmets by May of 2009. Kaitlynn will not require any more surgeries, and will grow up to live a normal healthy life. We were told that she does have a higher risk of having a child of her own with Craniosynostosis, but when that day comes we'll need to do Genetic testing. For now we are enjoying her every move, and loving her just the same as we do Dahrran and MacKenzie.
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Here is a picture of Kaitlynn a day before her surgery, and a few hours after her surgery, you could see the immediate difference. I haven't taken pictures of her head shape recently, but plan on doing it in the near future.
Then came our other Nephew! He was really having fun with it, and even had me take action shots of him making funny faces!!!
Then we've got Dahrran with Great Grandpa (my grandpa). They're buddies. Grandpa picks Dahrran up for Coffee and Rolls on Wednesday mornings, and then they go out to the farm to get grapes, cookies, marshmellows, peanuts, jellybeans, you name it they get it!!! It started out as grapes and cookies, now it's whatever Grandpa has to share, Dahrran comes home with!!!! I love that he's been able to have such a great bond with his great grandparents! I never got the chance to get to know any of my great grandparents. One of my great grandpa's is still alive, but I've never gotten to know him. I love the bond they've got!
We ended up with 27 kids participating! It was a great learning experience for me, and I was more than glad to help out!
Dahrran's group came in 2nd place! I was so proud of him!!!
MacKenzie didn't get to ride her bike but did get some bubbles for helping us out!
