Connor's Surgery

Many people have asked me what Connors surgery will be like. When Dr. Woo came in and told Andrew and I that Connor was going to have to have surgery I was not expecting what he told us. He started off by saying we are going to make a zig zag cut from ear to ear. That is when I stopped. I could not listen anymore. The only thing I focused on was Connor sleeping on me. Everyday since his surgery I have just been rubbing and kissing his blonde-almost white hair. They are going to have to shave it for the surgery. That is not how I pictured his first haircut going at all.

This next paragraph may be a bit graphic so if you don't want to read it, I don't blame you. After hearing news of the diagnosis being confirmed I somewhat blacked out so I am going to have Andrew type the rest, I believe it was my brains way of coping.

The surgery will consist of the team cutting his scalp from ear to ear over the top of his head in a zig zag pattern kind of like a head band. They use a zig zag pattern to minimize any blatant visible scaring once the hair returns (amazing the difference in comparison photos). Once the incision is made his skull is exposed from the mid crown and his scalp is then rolled back towards his neck so the team can have full access to the entire back of his skull. With careful cutting and a close watch from the neurosurgeon, Dr. Woo will remove the back of his skull completely. From that point he will manipulate the shape by re opening the bone fusion and carefully separating the skull into multiple pieces, it is then all re-attached by means of tiny plates and screws that can dissolve throughout the healing process (we had no idea that stuff existed!). His head will be reconstructed entirely in the back in what is termed a TCVR or total cranial vault reconstruction and the entire process can take anywhere from 3-5 hours permitting there are no complications throughout the surgery. We have the upmost confidence in this team as they are ranked 2nd in the nation behind Boston. The specialist team has performed over 500 cases with similar surgery all without any major complications, and no children with extended recovery time. Post-op he will be in the PICU for at least 24 hours, his head will swell considerably to the point where he may be nearly unrecognizable. He will then need to be transferred to recovery for the remainder of our visit where we will be educated on pain management and wound care. It will be the start of a tough road for our little guy but hopefully with a little luck and alot of prayer it will be the beginning of an end for his cranial issues!!

So that is how his surgery will go. I have been having bad dreams and just feeling nauseous with worry.  I've been keeping myself busy with things like cleaning, working out and laundry, when Connor is sleeping. When Connor is awake we play. Since we have had nice weather we have been outside, Connor LOVES being outside! I think my neighbors think I am nuts because I carry Connor on my hip down the street, because he hates his stroller! So I carry him and its fun for him and a workout for me! :) The thought of the worst that could happen has crossed my mind more than once. I know that I should not think like that, but I cant help it. The last few nights Connor has woken up upset, I have been rocking him back to sleep and rubbing his head, because I know that in a few weeks its not going to be that easy. I am most worried about bringing him back home. He is really on the move now and just wants to climb and he bumps his head on everything!  Andrew is taking a week and a half off work, I am so thankful for that. I know its not going to be easy, but with him home it will help so much!

Thank you again to everyone with all of the prayers and support and donations. I can't even explain how happy it makes me!

Connor is officially walking!

Staying Positive!

Tuckered out after playing at Mike & Brits!

It has been a week since we found out about Connors diagnosis. A week of worrying and a week that I am forgetting everything. The only thing on my mind is Connor and his surgery. A stressful week, there will be times that I am completely fine and then times where I just break down and cry. I know that he is going to be OK, but I can't help but think, "What if?" I have been researching a lot out his condition. Sometimes I have to stop because I feel like I am going to have an anxiety attack. I know that every child is different and every surgery is different, but still it scares me to death.  A lot of things that I have read say that this condition is genetic, but neither Andrew or I have anyone in our family with this. It is just something that happened.  I also have found that if you have one child with this condition, the chances of having another baby with this are 50/50. Most of you know my love for children, this is very heartbreaking for me. I don't think that I can go through all of this again. Even though it might not happen, I just do not think I will be able to handle it. I have gone through the anger stage, not really angry screaming just angry that this is happening. I have gone through the guilt stage, thinking that I did something wrong and that this is somehow my fault and I have/still am in the sad phase where I just cry and worry. And think about the bad. But I have been trying to remind myself of the positive-We are lucky we found out now, we are blessed to be in such a great hospital and we are so thankful for Mike and Brittany for saying something, I seriously will be thanking them for the rest of my life!!

I am so grateful for our friends and family that are throwing the benefit for Connor. It makes me so happy to know that we have such wonderful people supporting us. I want to thank everyone for the messages, texts, phone calls, donations and letters in the mail. It means so much to me, I cant even explain it. Last night my sister and my mom went to Staples to print off the flyers for Connors benefit, a man paid for all of them. That made me feel SO GOOD. Today I went and picked them up, the lady at the counter brought them too me and had tears in her eyes, when she handed them too me she started to cry. Then I started to cry. She told me how sorry she was and that she has a two year old and she doesn't know what she would do if she was in my shoes. She kept telling me how sweet and happy Connor was and told him to be strong for his Mommy! Connor just smiled at her and waved as we walked out the door. Little things like that make me feel better. I know I am not alone. I know that we have a huge support system behind us.

As for now we are enjoying every moment we have with Connor pre- surgery. He is really starting to walk now, its going to be hard to stop him from climbing on things after the surgery. I want to wrap him in bubble wrap!

Thank you for all of the prayers and continued support!!

Until next time!
Katie :)

<3 

Outside fun!

:)