Wednesday, March 20, 2013

Preparing for the big day

Knox has been growing so quickly and becoming quite the independent little man. We were quite attached to each other for the first two months or so of his life which means that little Knox had developed this almost unreasonable need to be held constantly. Not that I'm complaining; I had been waiting for a little baby who needed me as much as I needed him for many years. However, with the discovery of his own hands we now have a baby who can sit by himself for hours just looking at and sucking on his own fingers.

Last week we took Knox to have his first professional pictures taken. He did so amazing and never cried once - and we were putting him in pretty strange positions. He makes this hilarious expression when he's semi amused with what's going on around him but not necessarily pleased. He raises one eyebrow and just stares at you. So when the photographer tried to get him to smile by making some sort of duck call noise at him and waving flowers in his face he would always make that funny expression. Of course when mom stepped in and starting talking to him or his goofy daddy started dancing as if no one could see him....he delivered great smiles on cue!

We have been doing some at-home physical therapy with Knox for about 2 weeks to stretch his neck muscles. I started noticing that Knox always tilted his head to the left and when I brought it up to the doctor they realized that Knox also has Torticollis which translates to twisted neck. Basically, my womb was not the most comfortable of places for Knox to grow in for the last portion of my pregnancy. Not only was his head in a wedged state that caused enough pressure on his skull for his sagittal suture to close prematurely but his neck was all twisted up as well. Torticollis is easily fixable however so the neck stretches that we have been doing have already shown some improvement in Knox being able to look to his right. At first these stretches were clearly painful for him and he would scream while I cried. It's hard to be the reason you're child is in pain but I knew it was a necessary evil. But now that the tightened neck muscle is being stretched 5 times a day he doesn't seem to be in pain as much as he is annoyed that I'm constantly messing him. Sometimes he cries but most of the time he just lays there and lets me get through it.
The weeks have literally flown by since our last appointment with Dr. Jimenez and now we are preparing for Knox's surgery tomorrow afternoon. I met with the neurosurgical nurse this afternoon to review all the details. We have to check into surgery tomorrow morning at 7am however his surgery isn't scheduled until about noon. Knox is the 4th out of 6 babies being operated on tomorrow. He cannot eat any formula after 2am but can have Pedialyte up until 8am. I imagine those last few hours of sitting in the waiting area with a very hungry baby will be hell for anyone sitting near us.

My mom and brother are on their way from Oklahoma right now. My dad should be coming in late tonight or tomorrow depending on how he's doing since he's feeling a little under the weather...he may not come at all if he's too sick - for Knox's sake. Ken's mom is driving down tomorrow morning from Killeen. We have a lot of support right here and of course tons of support from friends and family who can't make it all the way to San Antonio.

I'm going to continue to post through this experience - the good, the bad, and the ugly. I want to keep people updated on how he's doing from surgery to graduating from helmet therapy but I also want to have this to show Knox someday so he can understand his own story and why he had to wear that funny looking helmet when he was a baby.

I'll update again soon once Knox is out of surgery. Please keep him in your prayers that he has a safe operation and a quick recovery.

Thank you!

Tuesday, March 12, 2013

Surgery Update

Knox is 10 weeks old today! He's an absolute pro at melting your heart through his big smiles and goofy laughs. He's getting so big and already tipping the scales at a little over 13 lbs.

We met with Dr. Jimenez last Wednesday to review Knox's CT images and it's his belief that Knox's sagittal suture (the one that runs over the length of his head front to back) is partially closed towards the front which is causing his elongated head shape and the ridge towards to the front of his skull. He is recommending that we still remove the entire strip of bone as he believes that the back portion of the sagittal suture will close prematurely anyways.

We have his surgery scheduled for March 21st. The surgery itself is only about 45 minutes however we are planning to spend one night in the hospital so they can closely monitor him. We will get to come home the next day and from what most parent's who have been through this have said he will really just need Tylenol to get him through the pain for the first few days. Babies are so resilient so I'm hoping that Knox recovers quickly and continues to brighten my days with his smiles.

The next step after this will be transitioning into his helmet. We meet with the orthotic specialist the following Monday where they will scan his head and then again on Wednesday where they will fit him with the helmet. He will have to wear his helmet 23 hours a day until he is 18 months old. The first week or two will be spent easing him into the helmet slowly with a 1 hour on/1 hour off schedule progressively increasing the amount of time the helmet is on until we reach the 23 hour goal.

That is all the news I have for now. I'm off to go sit with Knox to rub and kiss his little head. I'm sure that's what I will spend the next 9 days doing!

Thank you to everyone who reads this and continue to say little prayers for Knox.

Wednesday, March 6, 2013

The journey begins...

Knox was born January 1st, 2013. He is such a miracle for his daddy and I as we tried for many years to conceive. To be honest, we had all but given up when I found out I was pregnant last April. What a joy being pregnant was and to find out we were having a boy that August...well, Kenny was just over the moon about it.
I had always known it was a boy - a mother's intuition, I guess. I had always wanted a little girl but when I suddenly found myself pregnant I would daydream about how life was going to change with a child around and for some reason every daydream I had was always about a little baby boy. I even had dreams at night about the baby and it never failed that it was never a little girl. Now, I can't imagine myself with anyone but my perfect little baby boy!

I delivered late at night on the 1st and the next day was filled with love, exhaustion, snuggling, get my point.
The next day, everything changed for us as the word Craniosynostosis entered into our lives. The pediatrician informed Ken and I that she cannot find Knox's soft spot but is instead feeling a ridge of bone where one should be. She pointed out that Knox's head isn't round as other babies heads are but instead oval or football shaped. She walked a couple of very stunned and confused first time parents through what this probably meant and how surgical intervention is the only treatment.

We have since spent the last 9 weeks researching as much as we can to understand the cause, the treatment, and the usual outcomes. There are a few different surgical procedures that can be done to correct this. There is Cranial Vault Reconstruction (CVR) where an incision is made from ear to ear and the skull bones removed, remodeled, and replaced. This surgery is usually done around 9-12 months old due to the blood loss caused by this procedure. The other option is less invasive. It's the endoscopic method where two small incisions are made on the top of the head and a large strip of the skull is removed to allow the brain room to grow. This surgery is usually performed around 3-4 months old and the time spent in the hospital is usually cut down from one week with the CVR to just one night. The downside to this endoscopic method is that the surgery itself does not correct the head shape therefore an orthopedic helmet must then be worn to force the skull to grow rounder.

Oh, how I struggled with the decision on what type of surgery to proceed with. On one hand, the endoscopic sounds like a no-brainer. It's less invasive, the likelihood of Knox needing a blood transfusion is quite less and the hospital stay is just one quick night. But the idea of my child in a helmet for all of his big milestone development moments just didn't sit right with me. I started to think that maybe the more invasive CVR was the better choice because at least once that surgery is done, you are essentially done. No helmet wearing at all.
After some soul searching and many late night debates with my husband Ken and other family members I realized that the only one bothered by my precious baby in a me. Knox won't notice it after a few days and it will be off of him before he really develops any memories of his childhood so I have to do what the future adult Knox would have chosen for himself.
I'm confident that instead of an ear to ear scar on his head that he will constantly have to explain and will most likely cause some confidence issues at some point in his life he would rather have two small scars on the top of his head that no one can see and have worn the helmet that he can't even remember having to wear.

The endoscopic method is the best choice for us and it just so happens that I live in the city where this surgical procedure was invented. Dr. David Jimenez developed this procedure and is well known in the Craniosynostosis world. We are so lucky to have him as Knox's doctor and our first meeting with him was spent with him explaining the disorder to us and then taking Knox's "before" pictures. It was at that moment that I started crying and Dr. Jimenez put his hand on my shoulder and said, "I know this is scary but please know that I will take care of him as if he's one of my own".

And so our journey begins! Knox has since had a CT scan so that Dr. Jimenez can see exactly what he is working with. We are meeting with him again this afternoon to review those images and set a date for surgery. I'm hoping that this blog can serve as a way for family and friends to stay informed about Knox as well as using this blog as a therapeutic outlet for myself.

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