On my mind

We've known since early March that Aiden would be needing his next head surgery. Actually, we've known since the moment we sat across from the craniofacial specialist 4 years ago what the "plan of treatment" included. We've been through 5 previous surgeries. Yet it still doesn't get any easier.

On May 1st, Aiden will have what is called a frontal orbital advancement. This will be the second time he's undergone this procedure, and unfortunately not the last.

They will take him from my arms, whisk him off to the OR, and make a wavy incision from his left ear across the top of his head over to his right ear. They will pull the skin down from the head to the top of the brow bone, exposing his skull. They will cut a section of the skull loose to correct the shape and expand the area allowing more room for his brain to grow - something that occurs naturally in kids without Aiden's condition. The bone will then be replaced and the skin sewn back together at the seams. And when I am reunited with him he will no longer look like the boy I handed over to trusting hands just a few hours before.

This photo shows the bone segments that are removed during a frontal orbital advancement (photo credit: Wikipedia)

While you look at your typically developing kids day in and day out you barely notice the changes to the shape of their head, the lines of their face. Over time, you'll look through photos and marvel at how different your child looks from the year before. "Can you believe how much little Johnny has changed from preschool to Kindergarten?" you'll mention in passing to your spouse.

Now imagine witnessing those changes happen in a span of a few short hours. I do believe that is the hardest part. With this surgery, the transformation is so abrupt that it's a jar to your senses. I know it's still Aiden. I know all the physical change does not take away the spirit and personality that thrives in the little boy I love so much. But it still makes me sad.

Photo progression from Aiden's 1st skull surgery and recovery in 2009

In addition, I obviously worry about the procedure itself. The last time he had this done, at 15 months old, the neurosurgeon and craniofacial surgeon met us in the waiting area afterwards and shared with us that the necessity was evident when they began cutting the skull. They said when the bones were released, the dura (the layer around the brain) actually expanded right before them. Had we waited any longer the potential for complications from the brain pushing into the skull would have increased. The visual still hasn't left me to this day.

We are fully confident Aiden will be in trusted hands - with doctors and at a facility that specializes in treatment of kids with Apert Syndrome. But the thought of them slicing open his head enough to be able to actually see his brain doesn't sit well on this momma's heart. There are risks. I work really hard to keep my mind from straying in the direction of what-if's. However it is sometimes unavoidable.

Now that the boys are older, the preparation for this surgery will be different than before. Ethan will understand what is going on. Aiden will know. And we will need to figure out a way to delicately explain the why's. I worry how they will process the information and what emotional effect it will have on them.

My mom is flying in to care for Ethan while we are gone. She arrives on the 25th and Ricky, Aiden and I will leave for Dallas on the 29th. His pre-op appointments are on Monday, the 30th, surgery is first thing Tuesday morning. He will spend 1 night in the PICU and 1 night on the regular floor before being discharged. We are then required to remain in the Dallas area for 2 nights so we can be close to the hospital if any complications should arise. We will once again be staying at the Ronald McDonald House - I just know this will lift Aiden's spirits as he so loves being there. If all goes as planned, we will return home on Saturday, May 5th.

As you can see, we've got a lot on our plates and a lot on our mind. While we may talk openly about things and seem as if we have it all together, behind the scenes our hearts are heavy. We are scared. We are worried. Sure, we will once again muster up the strength from a place inside we didn't know we had, but we definitely appreciate everyone's support. Your prayers are important. As are your thoughtful words and the uplifting ways you let Aiden know he is special and loved.