What a Year!

So it was a year ago this week that Chase and I found out that we were expecting our precious baby number two. I initially experienced a very wide range of emotions that day and the following weeks that we found out. Chase even then, reminded me that God would never give us more than we could handle. It wasn’t that I was worried about not being able to handle it but I truly felt as though this timing was not according to my plans. I had wanted to have a May baby so I could finish out the school year and then spend the entire summer with my new baby. Well, little did we know what the next months would hold. If someone would have told me about everything that we would face in a year’s time I would have become consumed with fear and doubt that we would have been able to handle it without breaking.

But we survived.

I am a stressor. I am a worrier. I am one who feels as though I need to be in control. I, however, have learned time and time again that I am not. Try as I may, I do not get to determine life’s trials and tribulations but I can enjoy the miracles and celebrations that we are blessed with daily. Our family has been supported, uplifted, prayed for and encouraged by so very many people, many of those who heard our story and their hearts broke for us, some who were sent by God to help us survive this, some of whom we have never met or have yet to meet our precious Cannon. If a year ago from now I can look back on all of this I hope that someone will have been touched by our story. Someone will have learned about a word, craniosynostosis, that some days I often wish I still did not know. Thank you all so very much for praying, for trusting, for thinking of us and believing for us especially when we could not!

Cannon has been amazing! He wears his helmet for 23 hours a day and it is as if doesn’t even faze him! He really has done so well post-op. He initially was very jumpy at loud noises but he has gotten so much better at being relaxed and unfazed by our noisy little environment with Chandler around. The amount of ounces that he takes during one feed has decreased since prior to surgery but that is okay as he seems satisfied and still enjoys eating! He also does not like to be left out and prefers to be able to at least see someone else constantly but I am pretty sure that is a normal developmental milestone. He started sleeping through the nights again once we were home! YAY for him! Oh well…and me too!!! The Z-mat was such a life saver as initially laying flat on his back without the Z-mat was hard for him, but if he is on the Z-mat laying flat he is good! It became a bed, diaper changing station and a place to just lay and chill for Cannon. He now though can lay flat in his crib, on his changing pad or wherever. Although it has taken Cannon’s little body a bit to adjust his temperature due to the helmet he personally has been unfazed. I am so proud of my little boy my heart swells with every smile and laugh he shares with us. How precious life is!
I have learned how to just breathe and be at peace with situations since the stress of craniosynostosis. I feel as though I know can process crisis versus everyday life. In the past, things that would normally have sent my into a frenzy of stress and worry I now can process through and know that I will survive. My thoughts are now not consumed by craniosynostosis. I am sometimes shocked at the fact that my mind does not spend the 24/7 that it once did focusing on, stressing about, crying, researching, fearing, and praying about craniosynostosis. I am still dedicated to sharing our story and sharing about our Cannon and how crucial early diagnoses is so that others can be given the choices that we were so blessed to have.

Well…I have made everyone wait so long and I apologize for the delay in showing pictures. I wanted to get some really great before and after shots so that you could truly see the difference in Cannon’s head shaping because it really is drastic! We have been so blown away from the difference. At times it is hard, because we constantly see Cannon in his helmet but when it is off it is just amazing. Cannon recently came down with a virus that caused him to have a fever for a couple of days, during the times when his fever was high we had to take off his helmet so he could stay cool and attempt to break his fever. During those times, I was able to really just enjoy, focus and praise God for helping us receive the heartbreaking early diagnoses that we did so that our little boy could be allowed to grow the way he is suppose to. We at times, will still talk about how we cannot fathom if we had only had the option of the initial surgeon who had told us we had to at least wait until Cannon was a year to fourteen months old to operate or we could have the option to wait until he was four or seven. As you will see below Cannon’s head had become very visibly misshapen but now we have a very beautiful round head shaped little boy!

Our new prayer is that Cannon can stay healthy so his body can start to regrow his bone. We return to see our surgeon tomorrow, Wednesday and are so hopeful that everything is perfect!

Thank you again for your prayers and support!



Talking on the phone with GG!  This was early June, approximately three weeks prior to surgery.  You can see in this picture how large his forehead was as well as the way the back of his head is "cupped".

  

This is a bird's eye view of Cannon on the phone!  You can clearly see how elongated Cannon's head was.  This is what the doctor who diagnosed Cannon with craniosynostosis first noticed was the elongated shape of his head.  Also, if you look closely you can somewhat see the ridge on the very top of his head.

Here is Cannon playing on the floor with daddy one week prior to surgery.  Here you can see the dip in the on the top of the middle of his head.   You can also see how much his forehead was protruding outward and the back of his head was also pushing outward in a "football" shaped way.

Again, enjoying tummy time with the very entertaining...DADDY!  In this picture you can see the definitive ridge that goes from the back of his forehead to the back of his head.  You can also somewhat see the dips and bumps on either side of the ridge.  In person these were so very prevalent but with the flash Cannon's blond hair I know they are somewhat difficult to see.  Also, the shaping of his forehead is very obvious in this photo.



Daddy is playing airplane with Cannon!  Here is a top view one week prior to surgery.  In this picture you can very clearly see the large dip that was present in Cannon head as well as the ridge if you look closely.





This is the day prior to surgery.  You can see how tall his forehead was as well as almost make out the ridge on the top of his head.  Also his head is very tall and skinny making his cheeks look extra pinchable (aka chubby).  



These are the incisions one day post-op as well as the markings that show where bone was removed.  However, you can also see very clearly how rounded Cannon's head is!!!

These two pictures are one week post-op.  Look at those incisions!!! AMAZING!  You can also see though how absolutely incredible our Cannon's head looks.  It is round and not elongated.  It has no ridges and crevices.  It has no cupping or nodules! 

Helmet therapy here we come!  These two pictures are from our first day home (five days post-op).  WHAT A SWEET BOY!  Smiling away, ready to take on the world!

 Look at my precious round headed baby boy!  You can see drastically how his forehead is no longer so very tall and skinny.  You can drastically see how proportional his head and cheeks are and you can drastically see what a beautiful baby our Cannon is!  This is seven days post-op.

I could not wait to decorate!  We have color coordinating velcro straps to match his outfits for the sides and then...drum roll please...adorable stickers to decorate with.  This first session was trial basis but turned out so cute!  A week prior to surgery, I had went out with my mom because I was determined to get his helmet decorated as soon as we had it but I was unsuccessful.  But never fear!  My wonderfully determined mother came bearing stickers and stickers and stickers a couple days after being home!  Thank you mother!!! It only took a little while later and the helmet was covered! 

Silly mom!

Trying to eat my fist, that is how powerful I am in my "Super Hero Helmet".  I bet you want one too so you could do the same!

If you only knew how many tries this took!  WHEW!  However, even though it is evident that Cannon is not looking and that Chandler is so over saying as loud as possible "CHEEEEEEEEEEEEEEEEEEEEEEESE", I am so grateful to be where we are now!  Thank you so much for all your support, encouragement and most of all prayers!  Our Cannon is a SUPER BABY!