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.   

CT Results

Tuesday morning could not come fast enough.  Although in some ways I wanted time to freeze.  I wanted God’s hand to touch the CT results and make everything perfect and right.  Again, I felt sick.  I didn’t know a time line for when the results would be read but for some reason I felt very peaceful.  I knew lots of people were praying and I was so grateful because again I did not have words to express my heartache of what could come, but I felt peace.  I called at 8:00 just to give them my cell phone number again and to make sure that no matter what the time was, I would like a call when the results were read and then confirmed by our doctor.  I finally spoke with our regular nurse as she had been out all of the previous week.  She had been through it all with us.  All of the weight checks.  All of the billirubin tests.  All of the exhaustion and stress and unknown.  When we spoke she said she had just gotten in this morning and saw the doctor’s notes and referral for tests, she promised to call as soon as the results were in but at the very end she said “I would be so scared.”  Then like a flash the tears came. 

I was at peace. 

Remember?  Should I be scared?  There was nothing I could do.  Nothing I could change.  Would I if I could?  YES!  But there was NOTHING I could do, but wait and pray, wait and pray.  I wanted to do more.  I wanted my mind to focus on it all day.  I wanted to hold my baby and rock him all day and promise him everything would be okay, but my kindergarten loves awaited me.  And they had become my escape.  I didn’t want an escape, but I needed an escape.  I needed something, anything so that I wouldn’t fall into the abyss of nothing but focusing on my baby’s head and replaying everything over and over and feeling as though it was because of me that he was going through this. 

I prayed.

I called my mom and told her what the nurse had said.  I told her I felt odd to feel peace but I needed reassurance that maybe it was okay? 

I worried. 

My whole lunch break was spent on the computer reviewing all the sites Chase and I had visited over the weekend.  Maybe I missed something.  Maybe there was just some way that this would all be untrue.  I had a colleague who I didn’t really know her story but somewhere in my memory I remembered her mentioning something about her son needing a helmet, needing surgery and he was now a smart kindergartener who was amazing, but his story might be different than Cannon’s.  She came in my room to pick up one of my kiddos and I just mentioned briefly in passing Cannon’s situation.  Then I saw it in her eyes.  I knew my world might come crashing down.  But I held strong that it was not going to.  She promised to come back later so we could talk. 

I waited.

Then the call came.  I couldn’t breathe.  I called the counselor to come be with my class for a bit so I could hear all of what I needed to and then call Chase.  “Ashley, the radiologist read the results, two doctors have reviewed the results and the CT scan.  I am sorry, Ashley, but Cannon’s sagittal suture is prematurely fused.  The only correction for his severity of craniosynostosis is surgery.  You will need to see a specialist in Kansas City.  After our call I will contact his office to get your appointment scheduled.  In the meantime if you have questions you can call us back.”  I think the only word that I said was okay.  Because what can you say?   She asked what time she could call me back.  I told her 4:00.  Then my stomach dropped.

I crumbled.

I called Chase and with an eerie calmness I told him the results.  He didn’t say anything.  Again, what can you say.  Then, “I’m sorry babe.”  “Me too”.    

I broke.

My baby...my baby...my baby.       

Tests...

Chase did as the doctor said, he arrived at the ER for X-rays.  He had to wait an hour and forty-five minutes just to be seen but that was okay.  Cannon was such a calm, quiet and happy baby he really was unphased by all of it.  Finally, the X-ray tech was ready.  She took her pictures and told Chase she would immediately fax everything to our pediatrician’s office and that we should have results by the next day.  It was agonizing just thinking about what the results contained and how this could change everything!

I prayed.

We prayed so hard, but what do you pray for in a moment like this.  We prayed that the results would hold all the answers needed, but I need to back up a bit.  I knew in my heart of hearts something was wrong.  As a matter of fact, I had told Chase a week prior to going in to the doctor’s I thought it was odd that Cannon literally had no soft spots.  But in my mind someone in the health field would have noticed.  One of the nurses, doctors or specialists would have said something, anything about the fact that something wasn’t quite right.  So again, I just thought it was taking awhile for his head to develop the soft spots, that was it. And now this!?!?  Why didn’t someone mention it, I could have monitored more closely.  However, maybe it was a disguised blessing for if someone would have mentioned it prior I don’t know that I would have been able to face the next day.

I needed calm.

I needed peace.

I needed results.

I needed to know that everything, and I mean everything would be okay with my precious, sweet and perfect baby.  So we waited.  I waited until 8:00am and called the pediatrician’s office(I know not really waiting, but it was the most I could do).  I asked if the results had been faxed and whether or not a radiologist would be reading the results or one of the doctors.  I asked when the results would be read and we would have the answers.  I was told it may not be until Tuesday!  Today was Friday.  I would have to go into the weekend with this hanging over us!  Easter weekend to top it all off, where we would be seeing extended family members all wanting to talk about how great everything was going.  How wonderful it must be to be a family of four.  How perfect Cannon was.  How beautiful our family was and I was just supposed to go on like nothing was wrong or bothersome without focusing on the unknown, without breaking down, without focusing on my situation instead of the great miracle that this weekend represented? 

I couldn’t. 

I wouldn’t.  

So I was persistent. 

I gave them until 11:00am.  I called again.  I asked if the results were in.  I spoke with a different nurse, she did some checking and nothing had even come into the office?!?! What?  Well...I needed results.  I was again promised that as soon as the results were read that I would get a call but it might be Tuesday.  Really?  However, I emphasized several times that I truly was hoping and expecting results today.  The X-ray tech had told Chase it was possible, and I needed it to happen. 

I waited.

Then at 2:30 a call came.  I called the counselor to cover my class and took my phone call in the hallway.  I spoke with the same nurse from my 11:00 phone call and she said “The results were inconclusive.” WHAT?  “We need to have Cannon do a CT scan to receive clarifying results.” WHAT?  “The doctor mentioned this to your husband yesterday.”  WHAT? “When should I schedule the CT?”  Soon, today, tomorrow, as soon as possible, we needed results! Finally, after having a moment.  I told her to schedule as soon as she could.  We would go anywhere and at whatever time needed.  However, I had concerns. Cannon had already had a chest X-ray in the hospital, a brain ultrasound, an EKG and now a head X-ray and would soon need a CT scan.  The nurse said that the exposure to radiation was not really the issue as we needed the results.  Then my next question was “Is it possible to have all of this testing and still have it work out to where it was nothing to be concerned about?”  The nurse told me yes, it was possible so again I hoped.  She told me she would contact me as soon as she had the CT scheduled but that I needed to know that the CT could take hours of time to perform depending on Cannon.  Also, if Cannon struggled with being still and not cooperating then sedation might be required.  She gave the tip of taking him hungry and feeding him in the waiting room so that he would get drowsy.  Because after all he was seven weeks old.  Like we could really prep him to hold still and “be good” for his CT scan.  We hung up and I wanted to cry but I told myself to wait because after all the results today were inconclusive so we could pray for the results of the CT scan, maybe this is what was needed more time.  More time for Cannon’s head to correct itself.  That could happen right? 

I prayed.

The nurse called back and said that our appointment would be on Monday at 2:00.  Chase again would have to take him.  How again could I have my baby to go through this without me there?  It was what was best.  I probably wouldn’t be able to handle it anyway. 

We prayed.