Next week

On the heels of the crazy weekend, we're also starting to get anxious about our trip to Dallas next week.

I have been having a hard time thinking about Aiden's upcoming surgery. Dr. Fearon assures us that in comparison to the previous operations, the procedure and recovery for this one is much easier. I believe him. I do. But it doesn't make up for the fact that it is going to be much harder for me this time, emotionally speaking.

Aiden has undergone significant changes since he was born 14 months ago. His hands, once tiny little fists of uncertainty, have been transformed. He kicks and wiggles his soft smooth feet as if to show off his tiny toes. These changes were welcomed. The physical benefits outweighed any anxiety I had about the way my child would be changed forever. Even though I know the physical benefits of this next surgery, the anxiety is winning this time around.

The operation is two-fold. A cranial vault and a frontal orbital advancement. With Apert syndrome comes craniosynostosis, or the premature fusion of one or several sutures in the skull prior to birth. It can cause intra-cranial pressure (ICP) and can inhibit the proper growth of the brain. The goal of the cranial vault is to release some of the pressure (if it is present) and allow the brain more room to grow. The frontal orbital advancement involves, in a nutshell, putting natural material behind the brow bone to advance it forward about 2cm, which in turn provides greater protection of the eyes for these kids who tend to have more shallow eye sockets than normal. More detailed information about the procedure can be found on Dr. Fearon's website, here.

It all sounds pretty terrifying. And when Ricky and I were researching and visiting doctors after Aiden was just born, one doctor showed us photos of the surgery as it was in process. Let me tell you, it was terrifying. But aside from all of that, the thing that breaks my heart the most is that Aiden will forever look different. I'm told it won't be a huge change, and it may only be noticable to Ricky and I. But a change nonetheless.

He will be the same boy, but not as I know him now. His little face. Growing, changing ever so slightly as babies faces do when they get bigger. For 14 months I've looked into the same sweet baby blues, held the same round head full of fuzzy red-ish hair and wiped tears from the same silky soft cheeks.

I know why we have to do this surgery.

My head gets it. My heart doesn't. I'm not sure it ever will...

Please pray for our sweet little boy. And pray for our family during this tough time as well.

5 comments :

  1. my heart is aching for you! but i also know your family is incredibly strong and you will make it through this. i also know that little boy will continue to amaze you with his beautiful spirit, which is truly the boy you know and love. many hugs.

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  2. Wow. This is my first visit and you have so much on your hearts and hands. I will certainly have you in my thoughts next week. I hope it all goes smoothly and is a huge success.

    As for looking a little different, he'll still be your beautiful baby boy, nothing can change that.

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  3. Praying for you. Keep us posted on your upcoming trip.

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  4. Taryn, It is hard, but you will survive it. We've gone through 2 vaults with Olivia. Her eyes were the most affected and hardest for us to get used to. Now she is in the middle of having the midface advancement with the RED....trust me, this one will break your heart....in just 2 weeks, my little girl has been totally transformed to look like someone else. She's still her and I will love her no matter how she looks. The only thing that keeps me sane is knowing that we did this for her health, so she can breathe, if it was cosmetic, we wouldn't have done it or atleast not now.

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  5. Laurel Sanborn6:56 AM, May 01, 2009

    Somehow I managed not to leave my name on my post...it's Laurel Sanborn, Olivia's Mom

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