Wednesday, January 2, 2013

42 Days

We have 42 days until what will likely be the hardest day of our family life so far.

But this journey began a few months ago. One could even say this journey began on May 12th, 2012. The day Ava was born.

From the day Little Miss was born, we noticed that her left eye was not open as much as her right eye. We asked in the hospital and during check-ups, but doctors and nurses kept saying it was a developing muscle issue, and that as our baby continued to develop eye strength and use, that her left eye would soon match her right eye. And by golly they were right...soon that left eye was open every bit as much as her right eye, but the shape was still a tad bit assymetrical.

On October 9th 2012, we went in for Ava's 4 month check up and vaccinations. Wynston went with me this time. Once again, being the paranoid first time parents we are, we asked our pediatrician about Ava's eye shapes. This time, after a good look and feel around on Ava's head, our doctor told us that there was some developing skull assymetry and that this could be due to some sort of crazy long word that at the time meant absolutely nothing to me. It was time to do a CT scan to take a deeper peek at our little baby's noggin to see what was going on. Just to be sure. The doctor said it was probably nothing. Ava had a CT scan early on the rainy morning of October 12th 2012, her 5 month birthday. We went home hoping, praying and thinking it would be nothing.

That crazy long word was Craniosynostosis. And just a few short days later we found out our perfect, beautiful little baby had it. Basically Craniosynostosis means that one or more of the infant's cranial sutures (the seams between skull plates) have fused too early. Those sutures should remain open for the first couple of years to allow the baby's head to adequately expand with their growing brain. To be more specific, Ava has Unicoronal Craniosynostosis. This means that only one of her sutures has fused. As her brain grows, her little head must grow with it. Since the right side is fused closed, the left side compensates for that and she is developing the assymetry in her head shape. This is causing a small knot to form around her forehead, pushing her left brow bone down; this is the assymetry we are/were seeing in the shape of her eyes. Even with this happening, I feel like we are lucky because Ava's assymetry is not THAT noticeable. Maybe it's just me, but you really have to be looking for it to see it.

Fast forward to today. I won't bore you all with the details. Basically after Ava's diagnosis, we were sent to see specialists at the St. Louis Children's Hospital. We have been up there twice so far and have seen 4 doctors - Ava's plastic surgeon, neurosurgeon, opthalmologist and child psychologist. She will be having surgery on February 13th, 2013. We have one more trip up to see yet another doctor before Ava's surgery. They are all excellent doctor's...I'm told the best. And the good news is at this point the doctor's do not think that Ava's condition is part of a genetic syndrome; they say it is an isolated incident. She has also been through a developmental test which assured us that our funny, curious, at times fiesty little lady is exactly where she should be developmentally and that her Craniosynostosis hasn't negatively affected her development.

The procedure Ava will be having is what we must do. It is the next step to set her on a path for a healthy, happy, normal future. It is a decision we never thought we'd have to make as parents. We've been through so many emotions with this journey we are now on. Initially we were hoping to have her surgery very quickly after diagnosis, but that is not what the doctors wanted. They sent us home with instructions to "carry on and live life normally". We've done our best to do that. The holidays have been a wonderful distraction. But those are behind us now. We have 42 more day to prepare for Ava's surgery. To face the music. To keep her "everyday" as normal as possible, to play with Ava, to love on Ava, to enjoy our baby girl and rest assured that we are doing the best thing we can do for her. No matter how much anxiety and fear it puts in our hearts. Anytime I get teary-eyed, short of breath and tight-stomached thinking about what we have ahead of us, I can always put that aside by looking over at her smiling face, or listening to her holler and chase the cat in her walker or pick her up and enjoy the wet kisses she now gives. No matter what, she is perfect and beautiful in our eyes.


  1. Praying for you guys! She is a beauty!

  2. She is, and always will be perfect, as the wise Dr. Seuss has taught us; "There is no one alive that is youer than you". Will be sending lots of love and prayer your way!

  3. She is absolutely beautiful. I know this is scary, and I can't even imagine what you're feeling, but know that there are lots of prayers going up for Ava AND her parents!

  4. She is simply perfect! I've been thinking about you guys and praying for you the past couple of days. You guys are amazing parents and Ava is so lucky to have you.

  5. Casey, Ava is so cute! I came across your blog reading Natalie's and I had no idea your family was going through this. I will be praying for you! I know a few people in my company that babies have had major surgery at Children's and they provide amazing care for the little ones. You'll be in good hands and I pray that God guides the surgeon every step of the way!