Chandler

When I first found out I was pregnant I worried about Chandler adjusting to being a brother.  He was the first grandbaby on both sides of the family and he was treated like a prince (as he should be).  I loved that Chandler had gotten to experience the sole role of being an only child.  I had always planned on having three little loves running around but then with Chandler’s early birth and complications from being premature I had convinced myself that maybe we should just have one precious little one.  Then we found out I was expecting and I cried.  Surely Chandler would be okay right?  When I verbalized these thoughts, my mom ever so gently reminded me that I had survived my childhood and it did include my little brother!

I know it was all unreal to Chandler as to how his world would change and what was happening inside of mommy but we were shocked when we took him to our first ultrasound and he immediately responded by stating that there was a baby inside of mommy’s tummy and identified all the parts all the while knowing that it was mommy’s new baby. We also immediately began discussing the possibility of names.  We wanted him to be a part of it all hoping that the bonding could start early so that he would “survive” being a brother.  I bought books and we watched movies about new babies joining families and we constantly talked about the new baby as if he/she was a present part of our lives. 



Chandler kissing my belly!



The first time Chandler felt our little one kick, Chandler laughed and laughed and then he wanted to feel it again and again and again.  Then one day as I was sitting on the floor he put his feet on my belly.  I asked what he was doing and he told me he was kicking the baby back!  He loved his new baby and they had yet to even meet.  He would constantly kiss my belly, talk to my belly and put his hands on my belly waiting for the baby to kick and when he would feel the kicks and punches his eyes would light up and he would then ask me to “feel his baby”.  He would move his tummy in and out as fast as he could imitating the feeling of the baby kicking! 

As we prepared the nursery and would pull things out we made such a big deal about how this once belonged to him or how he once used this as a baby.  He would get so very excited to help us clean things and would pick out toys that he could share with the baby.

Two days prior to Cannon's arrival

When I went on bed rest Chandler was my strong hold.  Although he still had to attend daycare, as I was not allowed to care for him full time, he would bring stacks of books for us to read together when he got home.  He became my encouragement.  I lived for the times that we would nap together. I treasured all of the times when it was just the two of us because I knew that when the new baby came it would be new and different.  One evening, I went to read Chandler his new Valentine’s book on the couch when suddenly my water broke and Chandler’s life would forever be changed.  When Cannon was in the NICU Chandler was not allowed to see his brother but he was already protective, informing people that his brother’s name was indeed not Cannon but Cooper (Cooper was our other name choice). 

Boy did that take some convincing!



First time seeing Cannon!  Chandler was SO excited!







   



 

Finally when we were moved to the Special Care Unit Chandler was able to see his brother for the first time.  It was the sweetest moment, one that I will always treasure!  Chandler was a big brother and he was immediately in love with his new brother!   

 




Our first day home!

 Chandler did not get to revisit us while in the special care unit because he came down with a bad cough.  But every night we would call to talk to him and he was ready to come home and he was ready to see his brother, Cannon (pronounced Can-g-en according to Chandler).  The day we were finally released Chandler could not stop jumping he was just bursting with excitement for us all to be together. 



He wanted to be a part of EVERYTHING!

 

Once home, Chandler would constantly ask, "Can I hold baby Cangen?" Too sweet!



Nothing was problematic.  Cannon spit up, “Oops, momma Cannon spit up.  We need a burp rag”.  “Oops momma, Cannon poo-pooed.  We need a diaper.”  When Cannon would make a mess, spit up or get frustrated Chandler would ever so gently remind me “Don’t worry momma that is just what babies do!”  HA!  What a baby pro he had become!

Chandler also was so very proud that Cannon would wear his clothes, he would say “Look momma, Cannon looks so cute!  I wore that when I was a baby!”  Whether or not he did we would always agree! 

Chandler also ALWAYS wanted us to take a picture of Cannon and himself because “Look at us momma!  Aren’t we cute?  Hurry and take our picture!”  I would then have to proceed to take multiple pictures of them and then show Chandler and he would be so proud! 

Being silly and having fun~just being brothers!

 



Chandler was taught very early on that we cannot touch Cannon’s hands so he touches and plays with his feet, he constantly is kissing them or kissing his head because he LOVES him so much.  Chandler nightly is so adamant that he must take a bath with Cannon and he reminds you constantly.  He also will get so upset if someone else tries to “talk” with Cannon when Chandler is talking to him.  He loves to make Cannon smile and makes it his job to inform me when Cannon is crying and why!  Chandler takes his job so seriously!  It is absolutely precious!  I will treasure all of this forever (and of course remind him of how much he loves his brother when he doesn’t feel all the love)!

Kissing and hugging Cannon. Notice the matching outfits!

Chandler was and is a changed little guy.  He is protective.  He is loving.  He is a big brother and he loves it!  I look at my two boys while they sleep and I think of how truly blessed I am.  My boys are beautiful.  My boys are wonderful.  My boys are perfect! 



Chandler has become my constant source of hope during this craniosynostosis trial.  I hold him forever and just thank God!  He has seen me cry, he has seen me stressed, he has seen me worried but all throughout it he will remind me “Momma put on a happy face”, “Momma dance with me!”, “Momma, but I love you.”, “Momma can I have a kiss and hug?”.  It is like he senses it.  He knows that something is not right and yet God gave us our precious Chandler to be our source of comedic relief during this situation, to give us a precious reason to keep on going, to realize there is more to life than just this situation, more than my grief, more than my sorrow, there is the love of a three year old and how I wish everyone could get to experience that because there is nothing more beautiful.  I have gotten to see Chandler grow tremendously while caring for Cannon.  He treats being a brother as though it is a privilege and I love him so dearly for that. 



Bath time with my buddy!

I finally sat down with Chandler and talked with him about Cannon’s situation he listened so intently.  His eyes held mine and my heart broke.  I explained in a way that I knew Chandler would understand.  Once I finished talking about it, all I could say was, okay buddy?  And he so seriously said “But momma, I just want Cannon to be healed.” “Me too buddy, me too.”  My heart broke.  How desperately that had been my cry.  “But momma can he just be healed?”  “Yes, buddy that’s why Cannon has to go to the doctor the doctor is going to help heal Cannon.”  “No momma not with the doctor, just healed.”  Again, my cry.  We talked more about it then he hopped down and went to kiss Cannon’s feet as if maybe that would help.  Tears ran down my cheeks.



We love you big brother!





Insurance Battles

The day we visited the Hanger for Cannon’s helmet we asked if they could go ahead and seek the approval through our insurance for coverage of Cannon’s helmets.  We had been warned that at times insurance companies did not approve for such items to be covered.  We were told when information from our insurance came in we would get a call to be told whether or not the helmets would be covered.  The helmets are very costly.   They cost about $2,200 a piece and Cannon will need a total of three to four during his treatment.  If one cannot afford the helmets or cannot justify the cost of the helmets then this surgery would not be an option.  We agreed knowing that this would be a possibility but left hopeful.  We left agreeing that this was no choice.  This was the surgery we wanted Cannon to have and if it meant bending over backwards and strapping ourselves then that is what we would do.

The call came on Wednesday, the day after we had found out about the surgery date.  I was told that the initial request to our insurance company was denied.  The insurance company considered this expenditure to be an exclusion on our policy/plan.  Where do we go from here I asked?  Well we had no choice.  If we did not have the amount of money in full at the time the helmet was ready then we need to delay the surgery until we had the cost upfront.  I asked if there was financial assistance or a financial plan to be put on.  I was given a list of eight places that help in circumstances like ours, but, one was not applicable for residents in our county, one did not help with helmets, several of them we did not meet the income rate per house member ratio, one required the child in need to be on the previous year’s tax return of which we did not have Cannon on our 2011 income tax return for obvious reasons, he was not born in 2011, and the last two did not offer online applications or even requirements.  I didn’t know what to think.  I didn’t know where to turn.  Again, we were so close that we could feel it, knowing that this was the right choice and now this hurdle.  I decided to call the next day to talk to the nurse in neurosurgery maybe she would have a solution that I hadn’t thought of.  But now once again, I had to wait until the next day and be with my thoughts all night.

Nighttime was the worse.  It was when I wasn’t busy that my thoughts would turn dreadful.  I would think about things, but nothing could be resolved because there was no one available to call.  The house was quiet and I would just look Cannon peacefully sleeping and cry.  I tried to cry quietly so I wouldn’t awaken anyone but inside I felt like there was a dam breaking.  I felt like my heart had shattered.  It made no sense.  It still does not, but I would think of things I could have done differently, but I had done my best.  But here we were still in the same situation.  It was then that at times I would be angry, I would doubt God, I would cry out for Cannon to be healed without the need of a surgeon, I would get online and search and search and search until my eyes begged me to stop and then I came across this. http://www.craniokids.org/support/entry.php?59-Confessions-of-a-Cranio-Mom
Finally, someone else who wrote it all down, who put it into words, who made it all make sense to someone looking in.  It didn’t ease the pain but finally, I was resolved to understand that there are others out there who are going through it who have the same thoughts and feelings who just like me. 

I felt calm again.  The tears would stop because of the exhaustion and then in the morning it all felt right again.  My days became full of phone calls, research, and frustration but at least there was someone, anyone, everyone that I could talk to or look at and not have to think about what was to come. 

I called the nurse.  I spoke with her about the insurance stating that the helmets would not be covered and very matter of fact she asked if I had gotten the surgery precertified.  I wasn’t quite for sure what she was saying.  She stated that it was my responsibility to have the surgery precertified. 

That hadn’t happened already? 

I thought prior to even meeting with the doctor this had to be done because otherwise we wouldn’t have come.  We had to do what?  We had to contact the insurance company and get the surgery preapproved?  “Yes.” Yes????  Okay.  But insurance would cover the surgery right?  “Not always.”  Not always?????  WHAT?  So this may not even be an option.  “Well, often if insurance doesn’t cover it then the parents normally just pay for the surgery out of pocket.”  WHAT?  We were thinking we would be out of pocket for the helmets not the surgery also.  We could justify maybe the cost of all the helmets but now also the entire surgery?  Who do I start with? 

My insurance company.  GREAT, just who I wanted to talk to right now!  Good to know that I needed to do this, again, all on the way into work. 

I whipped out my card and called the insurance company.  As I was speaking to the first customer service agent and explaining my situation she told me that no, I in no way could get the surgery precertified.  That was the job of the doctor’s office, the hospital, the surgeon’s office.  The information had to come directly from them stating that there was a definitive need that Cannon needed to have the surgery.  GREAT!  Back to square one.  Okay, but at least I knew now where to call.  She then transferred me to benefits so I could discuss the helmet situation with them.  The customer service agent there went on and on about what is covered and what is not.  I had to stop her midway through though because I had children about to be ready for the school day.  This was the second to last day of school, the last Wednesday ever in kindergarten for these kiddos!  Again, I had to put on my happy face and pretend, pretend that I wasn’t about to break under the stress of all this.

On my morning break, I called the nurse back to tell her what I had been told.  She then told me that I needed to talk to the precertification department at the hospital and transferred me.  I then had to leave a message and wait.  Just what I wanted to do (NOT)!  By lunch, I still had not heard back from anyone.  I called again, and again I had to leave a message.  I called my mom just to vent.  This was CRAZY!  How do we go from thinking that insurance isn’t going to cover the helmets but at least the surgery because isn’t that what insurance does? Right?  I had been tired of hearing from insurance “elective”.  How was this elective?  My son’s brain did not have enough room to grow in a normal fashion and yet you think that this is elective?  I would never sign him up for such a surgery if it was an elective. 

This was our only choice.  My afternoon kiddos arrived and I still had yet to hear back.  At this point I was frantic.  I tried again to call our nurse, our insurance company, the precertification department, anyone who could help give us answers.  My break ended too soon.  I was not able to get a hold of anyone with answers.  I broke.  I had to ask one of the counselors to cover my room for just a minute.  I needed a moment to collect myself.  I needed confirmation that I was strong enough, that I had the strength to go on because right now in this moment it didn’t feel like it.  I called Chase, he didn’t answer.  I called my mom, just the sound of her voice sent me into a hysteria.  I wanted someone, anyone to take this away.  It didn’t make sense.  It wasn’t okay.  I had asked for help.  I had cried out to God to take this away.  I begged and pleaded and yet here I was again, fighting this uphill battle and yet I was ready for the war to be over.  I calmed down.  I had a job to do and I needed to get back to my kiddos, it was what they deserved.  I walked down the hallway headed to my classroom.  With every step I was begging and pleading, please, do not let insurance be the determining factor.  PLEASE!

My phone rang.

“Ashley?”

“Yes?”

“Hi, this is precertification from CMH.  I wanted to call and let you know that we received an authorization notice from your insurance.”

“What does that mean?”

“It means that insurance approved coverage of the surgery.”

“Could you please repeat that?  I think you said that it means insurance will cover the surgery?”

“Yes, insurance will cover the surgery.”

RELIEF!  Thank you, Father!  Once again, there He was, in the midst of it all!  Sending answers from heaven, guiding us through the approval of insurance, from the phone call of someone I didn’t even know.  THANK YOU! 

I asked about the helmets but unfortunately that was strictly handled through the Hanger. 

The day came to a close and I still did not have all the answers, but at least one answer was very clear, on June 4th Cannon’s surgery to endoscopically correct the premature closure of his sagittal suture would be taken care of.  I looked to another heart wrenching night of not knowing about the helmets but at least I could breathe again.

I picked up the boys.  On the way home from daycare my phone rang again.  This time it was Chase.  “Ashley, the helmets will be covered too!”  What?  In between my earlier conversation and the current time the Hanger had called Chase and told him that they had received an authorization number but insurance would not inform them of the coverage amount, that would be our responsibility.  Chase called the insurance company and got a hold of one of God’s earthly angels.  Originally, full if any coverage would be difficult to approve because of our policy.  Chase went in great depth about the entire procedure and the need of the helmet.  Chase was told that at times policies are just numbers but this case became a story.  Ultimately, after doing checking and proofing of the policy Cannon’s helmets would be covered in full until January 1st, as we then will need to meet our deductible again before receiving full coverage on the helmets.  HALLELJAH!

God you are good!

You are so good!

To go from one extreme of desperation to utter joy, this was truly a day touched by the hands of our great Father in heaven! 

We thank you forever and ever!

Scheduling Surgery

As we got home after our day full of driving and appointments there was a message on our answering machine.  It was the scheduler from CMH.  She had a date of surgery for us and wanted to inform us of all that would need to occur between now and then.  It was too late to call back. 

I was crushed! 

I wanted to know. 

I needed confirmation again that this was the right path and finally putting a date to it all would give me a concrete peace of mind.  I had to wait though.  I called on my way into work the next day.  I had to leave a message.  So I went on in, pretending that I was okay.  Pretending that it was no big deal because this was my last week with my precious kindergarten kiddos and I wanted it to be memorable.

The craziest week for us teachers, is the last week of school.  However, this whole school year was almost a blur.  My kiddos had gone through so much this year.  I had gone through so much this year.  WE had gone through so much this year.  And yet day after day through my darkest times they had been my light.  They brought laughter to my heart when I didn’t think that I could laugh, they had been my complete escape from the constant thoughts of craniosynostosis.  They had been my kiddos that I would not forget.  The parents of my kiddos this year had been so very supportive and thoughtful, considerate and gracious.  So many had given us their thoughts and prayers during my pregnancy and complications, my bed rest and complications, the birth of our precious Cannon and his complications, yet, they didn’t know.  They didn’t know that something was wrong, but word spreads quickly and just like previously, I felt as though maybe if I didn’t voice it or say it out loud to the people around me it would not be real.  But word had spread and I never in a second wanted one of my parents to feel as though they were the “last” ones to know or to feel as though I had hid my situation from them. 

I knew when I signed up to be a teacher that my personal life was not private.  I agreed to that, but I still felt as though my children did deserve a right to privacy.  However, I wanted my parents to hear about it from the source not what might possibly be said.  So I wrote a note and sent it home.  Again, putting into words, Cannon’s diagnoses and treatment plan, broke my heart.  Little could I have imagined the response that I would receive from my parents.  It was so encouraging yet heartbreaking at the same time.  It broke my heart that here again I was sharing a burden with them. 

I waited for the scheduler to call me back.  Then the call came.  I called to have the counselor cover my class as I took the call privately. 

I needed a minute. 

The scheduler informed me that the surgery would not be the following week but it would be Monday, June 4th. Oh, okay? So we would need to go up to KC on Friday for Pre-op and labs and then Monday early afternoon is when the surgery would approximately take place.  I bombarded the scheduler with questions trying to ensure that there would not be a need to postpone or delay the surgery past the fourth.  I explained that I had seen other families go through delays but with Cannon’s age and our time issue I wanted her to ensure that nothing would get in our way from having the surgery on the fourth.  She told me that there would be no promises and that most of the time we would not know if it would be postponed until the evening prior to.  Even with us traveling it would not matter.  But the likelihood of it needing to be postponed due to a lack of beds in the PICU were not as high as a few weeks ago, during the flu and RSV season.  I had no choice but to agree.  Even though it was not when we hoped for we still would have the whole summer to be with Cannon while he adjusted…while we adjusted to our new norm.

I cried again.

I thought of the songs that had gotten me through all of this “Strong Enough” by Matthew West (http://www.youtube.com/watch?v=A8JsRxVczmQ) and “He Said” by Group 1 Crew (http://www.youtube.com/watch?v=HZLsA8YP-6g).  Even though they constantly brought tears to my eyes they were my words, my songs and my heart.  They were my cry to God.

I had to hold on. 

I walked back into my room and little did I know that there was a gift that I would be given.  I had ordered all the kiddos a book for a kindergarten “graduation” gift.  I had never read the book before, but I had seen it in the catalog that I ordered it from and read the blip informing me about what it was about and thought it would be perfect.  Well for my read aloud that day I was reading the book to the kiddos so that they would recognize it when they recieved it and be excited that they knew the story.  I had no idea that it would be exactly what I needed in that moment, that day, through this whole ordeal.  Every page touched my heart in ways that I will never be able to forget that moment.  My heart broke while reading the book because the book was my story, is my story, it was and is our story through all of what we have experienced and have yet to experience.  I wanted to cry but I had to go on.  I had to be strong enough at least in that moment to finish.  I could not say thank you enough for that book.  One of my favorite most fitting pages says...

“You’ll go through tunnels, surrounded by dark, and you’ll wish for a light or even a spark, you might get scared or a little sad, wondering if maybe your track has gone bad.  So here is some advice to help ease your doubt; the track you took in must also go out, so steady yourself and just keep on going—before you know it, some light will be showing.  And then you’ll be out, heading to a new place.  You’ll be ready for the new tunnel you face.”

The book is I Knew You Could by Craig Dorfman.  You can read the book in its entirety online (http://www.wegivebooks.org/books/i-knew-you-could?auto_launch=1&rel_campain=190056)

Appointment #2- Part 2

We had spare time before our next appointment so we decided to go ahead and visit the place where we would be getting Cannon’s helmets post operation.  We needed to discuss where we would need to go for follow up visits, how many helmets we would need throughout Cannon’s treatment and how often we would need to go for follow ups.  We learned such a great deal though just talking with the orthotist.  She was so very thoughtful and understanding it was finally like everything was falling into place and this was where we were supposed to be. 

I was so grateful! 

I finally felt a peace wash over me. 

I could breathe.

It still hurt my heart to look at my little Cannon and picture what the very near future held but I suddenly was hopeful that maybe we could get through this.  Maybe these were the answers we needed!  Thank you Father!  Thank you!

Once we finished at the orthotics office we went on to the next appointment in the cranio/facial reconstructive plastic surgeon’s office.  We immediately were seen and again felt at great ease with the doctor.  He was so very open and honest in such a kind and heartfelt way.  Cannon also LOVED him!  He was talking so loudly to him and just kept on talking it was THE cutest thing in the whole world.  Again, we needed confirmation that Cannon was definitely a candidate for this method of craniectomy and we openly talked about his personal success.  We were getting to the point where we felt relief.  Then came the discussion that yes he definitely felt as though this was the best option for Cannon.  He also recognized the extreme time sensitivity, but…

he was going to be out of the office and operating room until early July due to some personal reasons. 

We sat back shocked. 

This had not been mentioned earlier.  NO!  We were so close!  July could possibly be too late, Cannon was already three months old and by then he would be five months.  We thought we were almost so very close to finally seeking closure to this part of the whole ordeal.  I know the shock was evident on both mine and Chase's  face. 

We didn’t know what to say. 

So, I wished him the very best in his upcoming personal journey that was worth celebrating, but now what do we do?  He then went into lots of details about what takes place in the operating room and who performs what part of the operation.  He truly felt comfortable with the neurosurgeon only doing the entire operation.  The doctor informed us that the nerosurgeon had done these solo in the past and that technically the cranio/facial plastic reconstructive surgeon’s job during surgery was only to put the bones back together and in this case there would be no putting the bones back together.  He felt so very confident in the neurosurgeon doing this solo that he recommended we proceed without hesitation. 

We had a lot to think about.

But, we both finally felt as though maybe through it all this was what we were suppose to find.

Appointment #2- Part 1 (Nerosurgeon)

We had two appointments on Monday.  The first was with the neurosurgeon that could perform an endoscopic craniectomy and the second appointment was with a different pediatric cranial/facial reconstructive plastic surgeon then we had seen previously.  The two doctors partnered together to perform the surgery.  Through all my research this was what a majority of patients had, two doctors, not just one for either method of surgery. 

The reasoning behind the need of a neurosurgeon with the CVR method(first appointment) was to help ensure that the dura was not affected during the removal of the skull.  The dura is the thick outermost membrane matter that covers the brain and spinal cord.  I had asked if a neurosurgeon would be present during the first appointment but the doctor who performed the CVR surgery was a one man show.  He believed that he was capable of handling all aspects of the surgery.  Again, he had the numbers on his side and he had not had a complication.

But this was my baby. 

If I wanted a neurosurgeon present would one be available?  Again, the first doctor ensured and promised me that a neurosurgeon was not needed; he was capable of taking care of the brain during surgery.  I didn’t want to doubt him, but I wanted what was the very best for Cannon.   I could not fathom his brain being exposed for six hours without a neurosurgeon there, monitoring, checking, double checking and ensuring that his brain was not affected.

I needed a neurosurgeon.

We arrived at the neurosurgeon’s office.  Finally, it was our turn.  In came the neurosurgeon and I felt myself take a breath and hold it.  I didn’t know what was to come or what to think.  I was ready this time though.  I had researched and read, looked at pictures and asked lots of questions prior to even coming. 

I was ready.

The neurosurgeon was so very friendly and compassionate.  He asked us lots of questions as well.  Like, when we were told about his method of correction for craniosynostosis?  How did we find out about him?  When did we find out about Cannon’s craniosynostosis?  When had we made this appointment?  Due to the extreme manner of time sensitivity he wanted to make sure that his office had done it right.  They had it in the records that we had scheduled an appointment in early April but that had been for the first traumatic appointment, not this one.  He wanted to know what we already knew? 

Where to begin… 

I started talking.

I don’t really remember what I said but finally I had to know.  Was, would, could Cannon be a candidate for the type and way he performed surgery to correct his sagittal fusion?  Yes.  YES?!?!  Then that was good enough for me.  I was sold!  But we needed to make sure.

He explained, he performs his surgery was by drilling two to four burr holes into the skull and then making a connecting opening of an inch to an inch and a half.  (Meaning that Cannon would just have two one inch scars on the top of his head after everything healed! Oh, well and one from the drain that would need to be in place.)  From there he would use his endoscopic tools to go in and remove approximately a three inch strip from the front of the soft spot/forehead to the back of Cannon’s skull where the next set of cranial sutures are located.  The removed strip would contain the sagittal suture that is already prematurely fused together.  He might also have to remove strips on the sides of Cannon’s skull if needed, barrel staves.  This would be just to ensure that as the brain continued to grow it would have the necessary room needed.  Then basically, Cannon would have a three inch wide soft spot on the entire top side of his head and possibly on the sides of his head if those were needed. 
http://www.youtube.com/watch?v=7qvjXSx6sM8&lr=1&feature=mhum

Then the next part is amazing!  Cannon’s dura would then signal to his brain that it needed to grow new bone. So his dura and brain would work together to fill in the strip of bone missing by creating new bone growth.  This though created a need for a helmet.  Although his helmet would guide his new bone growth’s shape his brain would do a lot of the work by growing in a natural shape.  It would push his skull in the correct direction and expand as needed, which currently is impossible for Cannon due to his sagittal suture being fused.  The helmet will need to be worn for 23 hours a day for a year following surgery. 

This is often the catch for most people.  Correct or proper helmet wear/use is how the entire process becomes successful.  The reasoning is that otherwise the new bone growth would not, could not grow correctly and his head could then form itself incorrectly leading you right back to where we currently were. 

However, if there is one thing Cannon has taught me it has been dedication.  Through his stay in the NICU, through all of his struggles with nursing and having to pump and then feed around the clock, doing double duty, through his sinus struggles and current tummy troubles I had learned to be dedicated in a way that I never thought possible.  We talked in great depth about the procedure and the extreme time sensitivity importance of it all.  The doctor asked if we could do the procedure tomorrow and although my heart screamed yes because I was ready to be done, my mind said no.

This was the last week of school for both Chase and I.  We were not prepared for a hospital stay at this time and everything now seemed to be moving in light warp speed.  So much so that I needed a minute, an hour or maybe a day to process it all, to think it all through and we had yet to even meet with the other doctor that would be needed for the surgery. It had seemed like just yesterday that things were moving so very slow but now it was like a whirlwind taking over. 

I couldn’t breathe.

Upon explaining our situation he then said that perhaps the next coming week would work.  He was going to need to get everything scheduled though, so we agreed that yes this is what we thought was best for Cannon.  His scheduler would be calling us later that day or the following with the exact date. 

In the meantime, two nurses were ready to get Cannon’s pictures for the before and the hopefully soon after shots.  After the pictures were taken, we asked lots of questions.  We basically had an entire recap of the appointment.  I think we just wanted to make sure we understood EVERYTHING because now it was moving so fast I couldn’t keep up! 

My head hurt. 

Then my heart broke, how could I even think about my head hurting when it was Cannon’s head that needed my focus?

Choices

We stopped along the way home for lunch.  Over lunch we tried to avoid “the” topic by talking about trivial things, things to take our mind off the pain, but then it became too much.  We fell silent and I finally asked “What do you think?” 

Chase broke.  

I broke.

We both cried.

We couldn’t do anything but cry and look at our precious Cannon.  To think of what he would have to endure just to be made right, just to allow him to continue to grow and allow him the best possible future.  It was up to us.  We prayed and begged for guidance, guidance to give us clear answers, to guide us in the right direction, to give us clarity so we could see what we should do.

We talked about it for the entire three hour drive back home.  We got nowhere with our discussion really, except for the fact that we needed another opinion.  We wanted another choice, to make sure, to see all options, to hope that there would be something better, something less traumatic, something less awful. 

We came home and I didn’t know where to begin. 

I became obsessed.

I could not spend enough time on the computer researching and reading all about treatments, options and other people’s journeys through craniosynostosis.  I spent every spare moment, every evening late into the night and often early morning hours trying to find as much as I could about craniosynostosis.  I would cry so hard reading through it all.  The tears might have been from the exhaustion but I also felt a connection with every family, every baby because all I could do was picture Cannon.  Each story, I watched innocent babies with misshapen heads requiring surgery and going through the experiences like champs all the while my heart broke.  I could not spend enough minutes, hours, days reading through all of information. 

A week passed. 

I called our pediatrician’s office, we had switched the boys to another doctor within the office who had seen Cannon since birth and who we had connected with when Chandler had been treated by her.  I needed an advocate, I needed advice, I needed someone to give us hope.  She was out of the office until Wednesday, but I could not wait.

I remembered. 

The first nurse, she told us there were options.  She told us there was someone there in KC who could perform the surgery endoscopically.  I remembered her name, so I searched for her through all the paperwork but she wasn’t there.  I searched online for the surgeon that performed the surgery endoscopically.  I found him, but I needed a referral, I needed a way to get an appointment and fast.  Supposedly online, the endoscopic treatment had to be performed prior to five months of age but preferably earlier; as early as possible.  Cannon was three months old.  I tried to call the first surgeon’s office to seek out the first nurse we spoke with.  I had to leave a message with the only nurse’s number on the paperwork but I got nowhere except I was told to “Enjoy my baby.  I needed to relax and just enjoy our time.” 

I was shocked. 

I did enjoy my baby, I enjoyed every moment, I loved my baby, I was his advocate, it was my job to protect and provide for Cannon and I was doing my absolute best, but this meant that I needed to research absolutely every option and avenue possible. 

I was also informed on my voicemail that I would not hear from the scheduler for at least another four months or so, so again I just needed to relax. 

I was appalled. 

We could not wait. 

I didn’t know what to do. 

So, I decided that I would just call the main office and ask for the first nurse we spoke with by name. It worked!  I spoke with her for almost an hour.  I shared all my worries, concerns and questions.  I felt a peace and calm and finally I felt as though I could see clearly to get where we had hoped.  I told her how we were hoping for an appointment with the neurosurgeon, but we needed one tomorrow, well actually we needed one yesterday but that was not possible.  She spoke with a doctor from the office about my concerns.  They thought it would still be possible to perform the surgery endoscopically.  She scheduled an appointment for the following Monday, only three days away! 

We were ecstatic! 

We felt relief!

We felt hope!

Appointment #1

I wanted to turn right around drive back home and not come back.  But my feet were grounded, one step at a time, I still held onto the hope that this would all just be a matter that needed “monitored”, nothing else.  We walked into the plastic surgeon’s office, checked in, sat and waited.  Then we were called back.  Upon entering the exam room I paced. 

I felt like I might get sick.

Then I sat and waited.  A nurse came in.  She started talking and at first it was like I could not hear what she was saying and then I focused, not on my emotions, but I focused for Cannon’s sake.  I needed to hear every word so that I could feel prepared for what was to come.  She started with what we already knew.  Cannon had a premature sagittal suture fusion.  This deformity would not allow his brain and/or his head to grow in the normal formation.  As his brain grew and needed room to grow, his head could not grow in width because the sagittal suture, the suture that runs front to back from the tip of the soft spot/forehead to the back of the head was already fused together, closed.  She then showed us pictures of the skull and where the sagittal suture was located as well as all the other sutures.  Then there were pictures of babies and children who also had sagittal fusions.  Then there were before and after pictures.  It was then that I noticed the scar on the top of these precious babes’ heads.  I sat back shocked.  I asked if that was how all surgery scars were?  Meaning was that how all the surgeries were preformed with an opening from ear to ear in a zigzag fashion?  She looked at me and I think she saw the fear.  She closed the book and asked if we had researched online.  I explained that not after we found that surgery was needed because I was scared.  She quietly, ever so quietly said “Just know you have options.  There are other ways to correct this.  Do research.  Ask for a referral.  There is a neurosurgeon here he does it differently, endoscopically.  Ask about it.”  Then in a rush, the door opened, she was done speaking and we met the surgeon, two more nurses, and another doctor.

Cannon suddenly needed an immediate diaper change.  The entourage exited.  I changed Cannon, but in the meantime Chase and I stared at one another and were shocked.  There were other options.  There were other choices.  I couldn’t know fast enough.  Again, the group reentered and began speaking about Cannon’s form of craniosynostosis. 

The surgeon then explained how he performs the surgery.  He would make an incision from ear to ear in a zigzag line, remove the top portion of Cannon’s skull, then take the skull apart, piece it back together like a puzzle and then to ensure that the new remodel would hold, he would use dissolvable plates and screws to hold it together.  The process would take about 6 hours.  The chance of a blood transfusion is often eminent.  Cannon would then also have a drain placed into the side of his head to ensure proper drainage occurs.  He would stay in the hospital for three to four days and upon release he would need a soft helmet that he would wear for three months strictly for protection.  The likelihood of needing to retighten the screws or shave down the plates can occur but not always or frequently.     

I was shocked.

I had not been prepared. 

I had not been mentally prepped to understand the invasiveness of the CVR(cranial vault remodel).  I had stopped googling for this very purpose.  Had I read about this online I don’t think we would have been there that day. 

The doctor said we could wait.  He felt confident in the fact that Cannon’s brain had enough room.  But how?  And why would we want to wait?  I wanted my baby to be okay.  I wanted it to be fixed.  Already at almost three months of age his head was majorly deforming itself.  Cannon had a definitive ridge at the top of his head that protrudes out of his head, he also has two steep crevices on either side of the ridge and then also a bump/round nodule beside the protruding ridge on his left side, his forehead is also very high and somewhat comes to steep upward slant and the back of his head also has major cupping.  How could we wait until it continued to get worse and just hope for the best?  I asked when the surgery needed to take place and we were informed that somewhere between 9-14 months of age.  We had to wait?  That long?  The scheduler would call in a few days. 

I then asked the dreaded question.

Were there other options? No. NO?!?  No.  This was the best way to correct this problem.  The surgeon was and is very well known and has done this for so many years he had lots of numbers on his side, years of experience, surgeries performed, paitents, requests, recommendations, awards, etc.  No, this was the best, the only way according to him to perform this operation to correct the fusion, to fix our Cannon.  Okay.  I truly appreciated the fact that this surgeon believes so very strongly in what he does and the way he does it.  He has done this so often that I needed him to believe in his ability, his way because that is how it should be.  But I needed to just make sure.  We finished the consultation, he showed us some scans, we asked our limited/basic questions, we had no more questions.

I couldn’t breathe.

We weren’t done.  The nurses came back in to finish the book of pictures with us.  Here it comes.  I prepped myself mentally.  They started back at the beginning with the pictures of the skull bones, then before surgery pictures, then months and years after surgery and then came “the” pictures.  “The” pictures of immediate post-op faces.  Faces that belonged to beautiful babies, faces that were wrapped in medical bandages, sad eyes, swollen eyes, bruised eyes, eyes swollen shut, heads that were twice as swollen as normal, cheeks that were so swollen the bandages were like vices squeezing these precious babies faces. 

I searched the room. 

I needed a trashcan. FAST.

I didn’t think I stomach another page turn and yet they kept going.  I looked at Chase.  His eyes were huge.  He was shocked. 

I couldn’t do this. 

I needed out. 

I couldn’t breathe.

Then the book was done.  Any questions?

 I could not even process the other bits of information that were shared after that.  We were given lots of papers with directions, reexplanations, contact numbers and then this little one with an adorable bear on it and across the bottom was http://craniocarebears.org.

The very first nurse we had spoke with was in the hallway.  She made sure we had all the papers with contact numbers and asked if we had the Cranio Bears website, she then gave me another site www.craniokids.org. 

I didn’t know it yet but both places would become a place of clarity, support and a space to encourage me to share our story. 

She didn’t know it yet but she had and would become a saving grace, a Godsend, an angel of hope on this dark and what seems like an unending road.