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.   

God is faithful

“God is faithful.”

This had become my mantra.  In times where I could not take another breath because I was so full of worry or insecurity I would repeat this over and over until I could go on. 

We had asked for prayer support at church one weekend while I was still pregnant but having complications.  A man wrote us a postcard saying that he had prayed for us he also included more beautiful words of encouragement and then at the very end he simply signed “God is faithful!”  The postcard was taped to the fridge so that I could see it daily and never forget. 

I could not forget.

Then throughout the duration of my bed rest when the quiet was too much I would repeat it until my heart would calm and I knew I would be okay.  In the rush to arrive at the hospital, worrying about preterm labor and the pressure of not wanting a NICU stay, I repeated it.  In labor when the pressure was intense and there was barely time to catch my breath I repeated it.  When Cannon could not catch his breath and they were trying to decide if NICU was the place for him I repeated it.  During our stay in the NICU and the Special Care Unit I repeated it.  Then in the worry and anxiety of waiting for the diagnoses I repeated it.  In the moment, the days and weeks following “that” phone call I repeated it.  Getting into the car the morning of our first appointment to KC I repeated it.

“God is faithful, God is faithful, God is faithful.”

The drive was long.  Not that long, but knowing what lay ahead of us didn’t make the drive any easier.  How I wished that instead of driving to this appointment we were just going up to KC to have fun with both Chandler and Cannon.  Or how fun it would be to take a weekend getaway just Chase and I, but neither of those choices were reality.  We were headed to KC to talk to a pediatric cranio/facial plastic reconstructive surgeon to discuss the reality that Cannon had cransynostosis. We were headed to KC to develop a plan of correction, to face reality, to place our baby into someone else’s hands and listen to all the advice that would be given to “fix” our baby. 

I had spoken with my friend who had gone through this about parts of her initial consultation and I thought that I was ready.  She told me about “the” pictures.  The beautiful babies with post-op swollen faces, bruising and swollen shut eyes and she told me that if she hadn’t done that, then she might not have survived her son’s post-op face.  I thought okay, now I know to prepare myself for that.  But that was all that I knew.

We finally arrived after going round and round trying to find the right street, the right area, the right entrance.  We had been there before for Chandler’s same day surgery but that had been two years ago.  Like a flood though, all the memories and emotions from that day came rushing in.  This time it was Cannon I was holding.  My stomach dropped, my mind raced and my heart beat so fast that I started shaking uncontrollably. 

I wanted to leave.

I wanted to cry.

I repeated it "God is faithful."