The road to recovery.

Brandon underwent surgery 2/5 to correct his prematurely fused sutures. We arrived bright and early on Friday morning at 5:30am and my poor baby wasn't allowed to eat anything starting twelve hours before the surgery so Brandon's last meal had been at his normal bedtime at 6:00pm the night before. Even with no food in his belly he still seemed to be in good spirits. We were checked in and waiting in pre-op before we knew it. Finally after what seemed like a very long wait Dr. Elton and Dr. Schmelzer came into the room to let us know that they were ready. Marvyn one of the nurses that were going to be in the room during the operation explained what was going to happen regarding anesthesia and that he would update us periodically throughout the whole operation. I kissed my little baby's bulby forehead for the last time as tears were streaming down my face.

We were told that the procedure would take roughly 4 hours but about two hours in Dr. Elton came out to tell us it was a success and Dr. Schmelzer was finishing up with the stitches. Relief. We were to go to the PICU waiting room and as soon as Brandon was transferred into his bed we could go in and see him. I was so ready just to see my little buddy, to touch him and make sure he was whole. Finally around 1ish he was settled into his room and resting comfortably with the help of some morphine. I don't think i have ever hurt more inside in my whole life than i do now. I know that i did the right thing and i know that the swelling will go down and I will be able to recognize my beautiful baby boys face again however I cant help but question why i did this to my sweet little baby.

We are now on the other side. The swelling is bad but I think i now am noticing it starting to go down. I am so ready to see his sweet little smile again. I am ready for him to laugh. I am ready for him to not hurt anymore.

Pre-op over and counting down.

We had our pre-op appointment Monday 2/1 and it went as well as to be expected. I am very sad to think that pretty soon my baby will look different. I love his little bulby forehead and dented nose. We also had his blood work done this day and I feel so sad. I couldn't even stay in the room and comfort him because as soon as they started to wrap him up in order to keep him still I semi wigged out, tears, studder and all. Dad had to go back to work after the Neurosurgeon pre-op appointment so it was only me during the blood work and I couldn't even be supportive for my baby :( Sad, its definitely hitting me, I feel like this is all my fault. I know this is not the way I should be but how can I help it. My little buddy is small and I cant explain to him that we are doing this so that he will be socially excepted and have a better chance at life. I feel so numb. I feel horrible. I feel like its all my fault. Tomorrow is the big day.

CT scan

Raising Awareness!

I just got the most wonderful call from my neurosurgeon today! Brandon is going to have his procedure done with Dr. Elton and Dr. Schmelzer of Banner Pediatric Specialists/ Cardons Children Center and Dr. Elton called me personally to ask if I would be ok doing an interview regarding Brandon in an article regarding Cranio. Tears immediately started to come to my eyes. Of course I would love to. I think about all of the support I have received from other parents whose lives have also been changed by Cranio and I feel honored that I too may be able to help others who are going down this same path. In the beginning I never even knew this condition existed let alone that I myself would have a baby with this condition. I do not have all the details because of course my listening skills decline when I'm in the throes of information overload however I will be receiving a call from the author within the next couple of days so I will keep everyone posted!

Pull it together girl.

I wasn't expecting to get THE CALL today however I did. It was Banner Ped's calling to tell me that a date has been set. February 5th, that's a Friday and we will need to be there at 5:30 am for check in with the time being set for 7:30. I just listened stunned, crying, the lady on the other end must be used to this she just waited and asked patiently if I was ok and ready for the instructions. Every time I think I feel strong like I can do this, we can do this, then something else breaks me down. We go February 1st for the pre-opp visit and to have Brandon's blood work done. I cried again. After the phone call was over I called my mom and cried again.

The Neurosurgeon... The Diagnosis.

On Monday December 29th 2009 after months of talking about Brandon's head and about what the right thing to do is I decided to call and make our first appointment with the Neurosurgeon. I took the day off of work and Eric and I both went to our first appointment with Brandon. We saw Dr. Scott Elton at Banner Pediatric Specialists. He is a wonderful man with great bedside manner. He came in, looked Brandon over and said that to him it feels like Brandon's coronal sutures were already fused which might explain why Brandon's head was just a little off in shape and size. My heart just sank and I don't think I made eye contact with the man more than 3 times after that. I heard him say surgery and correction and pressure but my mind was just racing. He wanted to do a CT scan to be able to get a better idea of what was going on and thanks to my new insurance what could have all been answered in one day became 3 separate visits. We went back to Cardons Children Center on Friday January 8 for the CT scan which thankfully only took about 3 minutes and even though Brandon hated it the Tech was quick and Brandon didn't have to stay strapped in for very long. Then we went back for the follow up with Dr. Elton on Monday January 11, 2010. My wonderful mother in law went with us for support and to lend a second ear seeing that I tend to tune out when things get stressful. Dr. Elton came in and pulled up Brandon's CT scan and I think if you could of taken a picture of our reaction it would be of three people with their jaws hitting the floor. There before my eyes was my beautiful baby's head and a soft spot that was so large it spanned from well below his forehead to the back of his skull. I would have never guessed it to be soooo big. Tears immediately left my eyes. Dr. Elton then went on to explain that Brandon has Bilateral Coronal Synostosis. The three words that I find myself saying over and over and over again in my head. The rest of the appointment was a blur to me but basically Brandon would need to have correction surgery to open the skull and create more room for the head and brain to grow. I still feel shell shocked when I think about what is to come, about the pain my baby will go through. The doctor assured me that they will do everything in their power to make sure Brandon is comfortable but I still am scared. That last thing any mother wants to do is have her baby hurt. I know this is the right thing to do, I know Brandon will never remember it but somehow I still feel wrong about putting him through it. As we go forward I am glad that I have the support of my family and friends. And luckily I have the best mini therapy group at work, those girls are great and they let me cry. Next up is the appointment on January 22nd with the pediatric eye specialist to get a baseline of where Brandon's vision is at. I know that he can see just fine but the Doctors want to have an idea of what his vision is like before the surgery is done. We also have to get Eric blood typed because Brandon is A+ and I am O+ so if Eric is A+ than he would be the best person to be able to donate blood for Brandon's surgery. If not then I already have my back up person ready to go.