Ashe Background

Ashe Background

Wednesday, June 09, 2010

Screw Holland!

Today we found out that Lexie has Craniosynostosis and will be needing surgery to correct it. Her head has only grown one centimeter since she has been born and we made an appointment with her neurologist who referred us to the neurosurgeon. I thought we would of been given a helmet and maybe some advice to how we should accept that her brain may not be growing. However, the moment the neurosurgeon saw her, he was convinced that she has Craniosynostosis with multi suture stenosis. Basically it means that all the plates in her head have come together and fused themselves permanently. If we don't get it fixed, her brain will never be able to expand due to being closed in. After a CT scan, her neurosurgeon was correct and has referred us to the Children's hospital in San Antonio that are prepared to take on a surgery like this. It is apparent that she will have to have the surgery but we are hoping that she has the less invasive type of surgery because it will result in less scaring, less blood loss, less surgery time and hospital stay time. The other surgery is really ......... let's just say not the way we want to go. Ever since Lexie came into our lives I have become a google champion. The one thing though is sometimes the images can do mare damage than good. Now we are just waiting for the referral to process so that we can meet with the doctor's and have a consolation before we proceed with the surgery.

I guess the only thing that we can do and ask you to do is to pray that Lexie comes out of her surgery better than when she went in and that she doesn't have any pain. I am so consumed right now by all of this that my thoughts are all over the place and I am just trying to hang on. I am so thankful that we are surrounded by such loving friends and family because they keep me moving. Even though they have no idea what we are going through and can only help so much, their prayers and love are appreciated. It is getting hard to have to tell people more about the complications that are Lexie related because it sometimes feels like it is taking over our lives. Like it is one more thing after another that keeps suffocating us. I often hear "What more can be thrown at you... and ....how are you not in a mess screaming at the top of your lungs." The plain truth is because I have two other babies who are relying on me to be their "stable" Mommy and I know the moment I lose it, I will never get it back. I have to remember that they are equally important in my life and that they need my attention just as much as Lexie does. I would rather cry myself to sleep then have them feel like their lives are short of anything but perfect.

6 comments:

Jen said...

It's so hard some days. I have been dreading Norah's appointment to the neurosurgeon this week for fear of finding out the same thing. There are days when taking care of Norah takes away from time Grant needs from me, it makes me feel awful. Hang in there, and we'll send some prayers your way.

Ashe's said...

Thanks Jen! You remind me that we are not alone. It is a relief that I am not the only one feeling torn between the kiddos. I am just going to have to try harder. Wishing you all the luck at Nora's next appointment.

The Mounce Family said...

We are so sorry to hear what you're going through. You and Eric are strong, wonderful parents and I know God will give you the strength you need to go through all this. I can't imagine how you are feeling, but we're praying for you! miss ya!

Anonymous said...

Blessings to you all! I'm so sorry to hear the lates obstacle. I do know that these little ones are resilient!

Love,
The Hendrixes
Parker, Amy, Jeff and Jordan

Autumn said...

Praying for you guys! I can't imagine what you are going through. Your kids have some pretty awesome parents!

Gina said...

Hey girl. No idea what your "too much" feels like but I know what mine does. Hang in there. I am with you on that mentality of the kids are counting on us! God is with you. It probably often doesn't feel like it but look at how gracefully you are handling it all. Wish I was close to watch the other two when you have doc appointments or all of them when you just plain need a break. Hugs friend!