Has it really been 6 years???

Yesterday marked the six year anniversary of Ethan's surgery. My beautiful first born baby boy was diagnosed at two weeks old with Saggital Stenosis. In laymen's term that means that his skull fused shut early going down the center of his skull. Many people always assumed that meant his soft spots closed early, when actually they were still open. I didn't know this until I went through all of this, but when we are born the skull is in three sections. It is open down the center and on each side of the skull. It closes around our teen years when our brains are done growing.

When Ethan was born he didn't have a cone head at all. But, he had this "knot" on the top of his head. When the pediatrician first examined him in the hospital she thought it was ""molding" just from delivery. When I took him in to the ped's office for his first visit at two weeks old I told her that he still had the lump on the top of his head. She said she could tell and wanted to send him for an x-ray. She mentioned the stenosis, but didn't go into a lot of detail at that time. She wanted to wait until the x-ray came back. Of course the X-ray tech said she couldn't tell anything, it would be sent to the radiologist to review. Less than a week later I got a call from the pediatrician. She explained that the x-ray showed signs of early closure, but we would have to take him down to Children's Hospital for a CT Scan and see a neurosurgeon. I was a complete and total wreck. Nick was calm, telling me not to get upset as we didn't know anything for sure. But, any mother would understand just having had their first baby. My hormones were still out of whack and hello, my first born!

Within a week we went and had the CT. Thankfully we didn't have to wait long before meeting with the Neurosurgeon. He met with us in the office asking what brought us, I kinda felt like saying "duh, you don't know?". So, we explained the story up until that point. He then took out the CT to show us. It was in amazing, great detail. It looked like a picture from a book. Anyway, he didn't even have to point it out to us, you could clearly tell that his skull fused shut down the entire center of his head. I couldn't hold in my tears, they started flowing like a river. Dr. K is such a wonderful, caring doctor. He explained that I did nothing wrong. They don't know what causes this problem. They find that it's most commonly found in first born sons. And, it happens in 1 in 1,000 births. So, we scheduled the surgery. Ethan and Nick have the exact same blood type, so Nick went to the Red Cross and donated blood in case they would need it for the surgery. It would be 6 1/2 weeks later, the longest time ever! I cried every day until his surgery, so scared something would happen to the wonderful, beautiful person who just entered my life. Here is a picture the morning of his surgery, you can see how the part is kind of flat and not rounded.

Why have the surgery you ask? Well, if he didn't have the surgery his head would grow in a very deformed shape. And, they don't know if not having the surgery causing any pressure on the brain since it's not able to push the skull in the direction it's supposed to do.

I have never shared these pictures with anyone. I didn't even want Nick to take pictures, but I'm so glad he did. It just seemed like the most awful thing that could happen, I didn't want pictures to remember it. But, I'm glad now that we have them and will be able to share them with Ethan. I'm sharing them on here in case someone else it searching for information, I am glad to share my story.

When they came to take my baby to surgery I completely lost control of myself. They didn't even take him down on a gurney since he was so small. The nurse came and got him, that was the hardest thing I ever did was hand him over to her. I'm sure everyone in that room thought I was a freak. There were a ton of children just getting tubes for their ears. It was an assembly line. Then there was us and another couple with a newborn who was going in for heart surgery. They led us to the waiting area and said they would call with updates. It was expected to take like 3 hours. I went and pumped and tried to read a magazine. All I could do was watch the stupid clock. 1 1/2 hours later the surgeon came into the waiting room and my heart stopped. All I could think of was the worst if he was the one to come to us. He came out right away since I had been so upset. The surgery went great and they were already done. We were told we would be able to see him in an hour. So, I made all the calls and anxiously awaited holding my baby again.

His recovery was remarkable. He didn't need anything more than Tylenol for pain. I think the hardest thing for him was he was able to suck his thumb due to the splints holding his IV's in place. He didn't have a lot of swelling. When his little face started to show swelling we would flip him to his other side and that seemed to help keep the swelling down significantly. He did so much better than mom. :) He healed so quickly, I was so amazed. I will share a few other pictures with you showing how they cut, etc. It looks pretty awful, but it really wasn't that bad. If anyone is going through this or knows someone I would be glad to share more information, answer any questions, or just provide support to someone else going through the same thing.