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.   

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." 

Heartache

We stopped googling. 

I had googled and googled all throughout being pregnant and it had stressed me out beyond belief.  I didn’t see a need to try to sort through the fiction from fact and everyone’s opinions from actual experts.  We had come to accept the diagnoses.  We didn’t like the diagnoses, we were still shocked by the diagnoses and we were still hopeful, but we had faced the fact that this was our reality.

I still cried.

In the quiet, at night, after everyone else was asleep I would look at my beautiful baby boy and cry for what his life was supposed to be.  We were supposed to just worry about colds, runny noses, ear infections, not craniosynostosis, sagittal fusions and craniectomies.  I was mad that I was still so sad.  I was only supposed to be sad for one night, not continuously, but every time that I thought that I was done with the tears they would suddenly come again. 

I prayed.

I had found my way back to praying.  I would pray for strength, guidance, peace, calm and I would pray for Cannon.  I would get on my knees as my baby slept and beg that there would be another way to heal.  I would pray to make the hurt fade and the answers be clear.  I prayed that there would be hope that surgery would not be needed.  I prayed that Cannon would not have to go through all of this. 

I pleaded.

I would picture the moment that we would have to wave goodbye to Cannon and hand him over to the nurses and surgeons, my little precious Cannon and then I would break.  The closer May 9^th came the more tears I shed, and May 9^th was just the consultation to build a plan of correction not even the surgery date. 

I was so scared.

My friend who had walked through this awful craniosynotosis journey stopped by prior to our visit to KC.  I cried so hard again.  I told her about my tears and how I felt ashamed of them.  But in her comfort she reassured me that it was okay.  It was okay to be sad.  It was okay to be mad.  It was okay to feel whatever I was feeling because Cannon was my baby and it was granted to me to protect him, provide for him and this was so out of my control. 

I felt so alone.

It was as though no one could relate. Everyone else was going on with their lives stressing about all sorts of things but when they would share their stresses I would feel awful because I just wanted to say really?  Really, you think that your situation is stressful?  You have NO idea what stress is like until you look into the eyes of your smiling, cooing, innocent baby who trusts you to care for him, protect him, love him and you can’t promise that it is all going to be okay because you don’t know.  You don’t know what the doctors will say, you don’t know that this will fix everything; you don’t even know if this is what you should do for him for his future.  Others would be so stressed about the colds, allergies and stresses that come with a newborn and I felt as though I couldn’t relate because if only they could know the pain and heartache that was going on inside.  I never or would never wish this kind of heartache upon someone but I felt so alone.  I wanted to just worry about the little things not this.  I too looked back at the things I used to stress relentlessly about and thought now how ridiculous I had been.

I cried.

People didn’t know what to say so they would say things that would hurt more than help.  The comments of “at least this can be fixed”, would crush me.  Yes, I know, but he is a two month old baby, my baby and it doesn’t make it any better or hurt any less.  “At least this is not a life sentence” or “At least it isn’t ______________”(fill the blank with all sorts of horrible ailments or problems), okay, but right now it is so hard to see the end, so it feels like that it is a lifelong situation it feels like it is the end of the world to me and that does not make it any easier to go through.  “Do you think that you will have more kids after going through all of this?”  Well right now my focus is rightfully on Cannon, and I do not know what the future holds.  But if for one instant I would have thought that thought after going through Chandler’s childhood ailments I wouldn’t have my precious Cannon and I would never in a millisecond want to be here without Cannon.  “I think that maybe you shouldn’t have more children, because you endanger little lives with all the complications that you put them through.” WHAT?  Thank you for the extreme amount of guilt that I had already thought of, that I feel every single day, every moment and with every breath I take.  I love my children so much that I would never ever put them through anything intentionally.  I too, had hoped that my pregnancy with Cannon would be full term, our hospital stay would not be long, his future would not hold complications or pain but I am not the One who controls that and I wouldn’t change that because then Chase and I, Chandler and Cannon would not be who we are today, as a family, as a unit, as believers.

I prayed.

Grief

We woke up the next day and it was easier not to talk about it.  It was like if we didn’t talk about it then it wasn’t real.  I hadn’t told anyone else but my dear friends yesterday and my mom.  Chase had handled all the other phone calls.  I didn’t want to talk about it.  I didn’t want to think about it.

I was mad.

I was mad that someone so precious would have to endure something so awful.  I was mad that this is what my Cannon would have to face.  I was mad at the fact that no one had mentioned this earlier.  I was mad that after all the praying the results showed this.  I was mad that I couldn’t change this.  I was mad that I had been so hopeful.  

I was mad.

I know very well the stages of grief.  I knew that I was angry.  I was so angry I didn’t know how I could speak to God.  I couldn’t speak to Him.  I had trusted Him, depended on Him, needed Him.  So instead of focusing on being mad I pretended.

I pretended that it was all a big misunderstanding.  That maybe we would go to the specialist in KC and somehow Cannon would be healed.  His fusion would be unfused.  After all I believed and still believe in miracles.  So maybe, I could hope again for a miracle.  I could believe that there could be a miracle that the surgeon would not need to do surgery; Cannon’s body would fix itself.   

I was in denial.

It was easier not to talk about it.  Not to tell people.  I am not one who shares my personal life easily and my kindergarten world had become my escape.  My kids didn’t know and wouldn’t know about this.  When I was there in front of them, I pretended that everything was perfect, that my life was not crumbling apart, that I was not so devastated that I couldn’t be left alone.  But in truth I felt as though my life was crumbling, I was devastated, I was scared to be alone.  And in the quiet I would cry so hard.  On the drive to work or to pick up the boys I sobbed. 

I pleaded.

I begged that this could be taken away from Cannon.  I would endure this pain, this treatment, this reality.  I needed to take this away from him.  He did not deserve this.  I begged that the situation could be different.

I remember so clearly that night that I called my mom and I told her that I needed a day, I needed a day to cry until I couldn’t cry anymore and then I could move on.  I gave myself permission to be crushed with the overwhelming sense that this was our new life.  So I sobbed to her on the phone that night.  I couldn’t say anything or do anything but cry.  I couldn’t make sense of any of it.  I wanted to change it and yet here it was.

A week flew by and I knew others knew.  Or at least they knew something was wrong.  I again didn’t have the words.  It was easier to not admit that something was wrong.  If I didn’t admit it, then it wasn’t real.  If I didn’t put it into words, then it wasn’t real.   If I didn't admit it then it wasn’t something that I would constantly have to face.  I wouldn’t have to listen to others share words of sorrow, the comforting hugs, the sad looks, the thoughts of pity.  However, I had to.  I waited.  I waited until I really could not wait any longer.  Things were being said and pondering thoughts were causing erroneous things to be said, so I had to admit it.  I had to reach out and ask for prayers, prayers, to cover our sweet Cannon.  Because again, in this moment I did not have the words to give. 

***Thank you, thank you for your prayers, thank you for being strong and lifting us up as we were weak, we couldn’t think, we couldn’t have gone on to pick up the pieces without all of the prayers and thoughts.  Thank you, thank you for the words of kindness, sorrow and comfort.  Thank you for your hugs and pats on the back.  Thank you for holding our hands and your kind looks, full of strength and wisdom.  Many of you have experienced grief and have had grief greater than this yet you took on our sorrow and made it your own.  I sincerely thank you with all of my heart!***

Why?

It was 4:00, I prepared myself.  I knew that the nurse said I could ask whatever questions I had.  But I didn’t even know what to ask.  She gave me all the details of the appointment in KC.  Our appointment would be May 9th with a pediatric craino/facial reconstructive/plastic surgeon.  I had read that if surgery was needed this is the type of doctor one needed to see.  So I was relieved.  We continued to talk about the details of the appointment, what I needed to take to the appointment, a contact from the doctor’s office and then at the very end she said “Also, the doctor here told me to tell you that she just doesn’t feel comfortable answering any questions about this since she has never experienced this before so if you have any questions don’t call here just call up to KC.” What?  I too was new to all of this.  I too had never experienced this.  This was my baby, I wanted an advocate, someone who I could talk to about it, but don’t call her?  Okay?  We ended the call and then came the rush of tears, the rush of the reality of the situation and the fear.

I cried.

I cried so hard I thought I might be sick, I couldn’t breathe.  I was still at work but the kiddos were gone.  Then like angels my best friend and my friend from earlier came in.  They both knew words were not needed.  They were just quiet.   I stopped the broken dam of tears long enough to have them both share comfort.  At least I had someone.  I had someone who had gone through this before.  Someone who could relate to this insane unheard of situation.  I would survive; maybe.

I left.

On the drive to pick up the boys I just kept replaying all the events like some awful dream.  Surely that’s what this was.  So many peopled prayed, were still praying, we had prayed, we were still praying.  I didn’t understand.  I couldn’t understand.  It didn’t make sense.  I didn’t know what the surgery would entail, but I knew that any operation on your precious beloved one especially a precious innocent baby who had no idea what was going on except that he was so dearly loved and cared for was awful.  He was happy and cheerful.  He rarely cried.  He would have to endure a major operation to fix something that shouldn’t have happened.  I arrived to pick up the boys and again I broke. 

I didn’t want to talk. 

I didn’t have words. 

I couldn’t talk. 

All I could do was cry. 

Fortunately, there were so many others there to pick up their kiddos that I didn’t have to.  I knew that our daycare provider knew but she didn’t push.  I squeezed both my boys so tight.  I didn’t want to let go.  If I could just hold them forever in that moment then everything could just stop and I wouldn’t have to face reality.  After all I thought I was strong.  I thought I was capable.  I had faith.  I had God on my side.  Then there was this...this swift kick to reality that not everything could be perfect.  Not everything could be so smooth.  There had been a pastor once preaching on storms in life.  He had said that if you’re not in a storm now then you were on the edge.  If you weren’t on the edge then somewhere in the horizon there was a storm brewing.  It was up to us, to our strong faith as to how we entered the storm and how we would survive the storm, however, right in that moment I just wanted to close my eyes and make it all go away.  How could I go on knowing and waiting for what was to come?

I questioned everything.

We got home and I collapsed literally into tears.  Chase was there.  We just stood for a long time embracing each other, not needing words, not needing to talk just needing to hold each other up.  Then we were back to our reality.  Cooking dinner, bathing the boys, feeding Cannon, reading bedtime stories, nighttime prayers, tucking Chandler in, feeding Cannon and falling into bed with exhaustion all the while tears were in my eyes, questions were storming my brain and my calm was gone.  In one phone call, in a few spoken words all of it was gone.       

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.       

CT Scan

The weekend was a blur, full of family and events.  Anything and everything to try to keep our mind off of the reality of the situation.  But it was Easter weekend, full of rejoicing and celebrating, what this holiday meant to us, to our family, to our faith.  However, no matter how much joy and laughter there was there was still that moment, that thought that would never stop.  It was the fact that on Monday, after the CT scan things could drastically change.  The peaceful calm life that we were settling into could possibly be tipped.

I was not strong enough.

I knew I was not strong enough. 

In the still and quiet I would doubt.

I doubted myself. 

I doubted the doctors. 

I doubted the results. 

I doubted the fact that this was happening to us, to our beautiful precious Cannon.

Of course we had googled.  We googled that word, scaphocephaly.  We saw beautiful babies with misshapen heads.  We compared.  We analyzed.  Sure there were similarities but Cannon was different, right? We read.  We researched just basic treatments, you know just helmets nothing invasive, nothing too difficult to endure.  I pulled pictures striving to find a picture of the top/side/front/back of Chandler’s head from when he was a baby.  I remembered every well child checkup they would and still comment on Chandler’s head being high on the percentile chart, I mean like in the 98%.  So surely this was just going to be Cannon’s story as well. 

I stressed.

I thought for sure I would be sick.  However, fortunately the weekend alleviated even if just for a short while the constant thoughts.  My thoughts were awful.  I felt as though I somehow was responsible.  I still wonder.  Maybe if I hadn’t been on bedrest.  Maybe it was in my genetic makeup.  Maybe it was my inability to carry my babies full term.  Maybe it was something I had done because surely he would not be created this way.  This was a deformity, it was me taking ownership of it, needing to take ownership of it.  But Chase, kept on ensuring me it wasn’t, kept saying it would be okay.  So I trusted that God would be there.  We would get answers.  Again though, what do you pray for?  So I prayed that God understood that I didn’t have words right now because I just didn’t know what to say but that the Holy Spirit could take my heart and make it known.  We wanted there to be no scaphocephaly, but if there was we wanted God to guide us through it because we knew we were not strong enough.  But if worse came to worse then there would be the need for a helmet.  That was all.

I hoped.

Monday came.  FINALLY!  Chase took Cannon and with the help of his mom the CT scan was a walk in the park for Cannon.  He acted as if it was no big deal.  I think they were literally done in twenty minutes of the start of the scan!  Chase called at 2:30 and I was shocked but so relieved.  There had been no need for sedation and they had gotten called back so quickly Cannon hadn’t even got to finish his bottle but he still did great!  Thank you Father! 

Now we waited and prayed.

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.

Where to begin? Part 2

Cannon's Story...

We finally were released from going to the doctor’s for continuous weight checks! 

I celebrated.

Yet we had not even once seen or heard from our primary pediatrician.  For Cannon’s two week appointment his primary pediatrician cancelled and we saw a different pediatrician from the same office.  Well, we our saw our primary pediatrician once when we took Chandler in for a strain of the flu but she did not even acknowledge Cannon except for to inform me that if Cannon got sick with the similar strain or parts of the virus it would be an immediate return to the hospital.  Great thing to tell an exhausted, stressed out, emotional momma who had had enough of the hospital/doctor’s office, and yet we were there not for Cannon but for Chandler who was also very sick. 

I stressed.

However, finally with two weeks left of maternity leave I could breathe!  Cannon was gaining weight; we found an eating/pumping routine that worked.  I again tried to go back to nursing, but for Cannon it was just was not something he was able to do.  Although it was heartbreaking to not be able to do what I had hoped for, I at least was able to provide what I felt was best for Cannon.  Yet, Cannon was a VERY slow eater (three ounces would take him an hour).

I learned how to be dedicated.

Then came the day to return to my kindergarten babes.  I had not seen them for so long, ten weeks, an entire quarter of their kindergarten year.  Although I was excited, being away from the daily routines and schedules and demands of teaching had been drastic and that was okay because I had a precious baby to dedicate my time to.  I cried the night before I left to go on bed rest and I cried the night before I returned.  I pulled into the parking lot and after a moment of silence, a quick prayer, a deep breath I walked in strong and ready.  But my emotions took hold the moment I saw my colleagues awaiting for my arrival.

I cried. 

I was leaving my tiny precious baby for my career.  He was so little.  He was so young.  He was so precious.  He was so perfect.  How could I have made this choice? 

I had no choice. 

Coming back the day I did left me with only one week and two days left of FMLA coverage if something came up between now and the end of the year.  But nothing would happen, everything would be fine.  Chase would take Cannon to his two month appointment (again, our primary care pediatrician would not be seeing Cannon due to her vacation) and Chandler and Cannon could surely stay healthy the last two months of school.         

I hoped.

Cannon was a very slow eater but he also was a very loud eater.  He was very snorty and I felt like he was very congested.  We dealt with this for awhile.  I had called the doctor’s office for advice.  The said try saline drops and suction as needed.  But neither was helpful.  Not to mention suctioning was not successful or enjoyable for either of us. 

I tried.

After week of constant saline drops prior to eating and suctioning things had not gotten better they had actually gotten worse and eating for Cannon was getting harder.  Eating was hard due to his inability to breathe and eat at the same time.  I finally decided Cannon had to be seen so Chase took him in on Thursday, April 5^th.  Again, our primary pediatrician was not available so we saw the pediatrician who did the rounds during the week of our hospital stay after Cannon’s delivery.  I had told Chase to call as soon as he was done just so that I could hear everything was okay, just a cold or maybe allergies.  Chase called and told me his nose, throat and lungs checked out fine!  She talked to Chase about Cannon possibly having a reflux issue with his sucking that would make him a loud eater, but it was not anything to be concerned about he would outgrow it. 

I felt relieved!

Then Chase said, but she was concerned about the shaping of his head.  What?  His head was very narrow and shaped somewhat like a football. What?  Wait, he was just going in for a stuffy nose.  Okay what now?  She wanted Cannon to have an X-ray and Chase was to go home get another bottle and immediately go to the ER for the X-ray.  Okay and this means...well...she mentioned this word scaphocephaly.  Is she sure?  What is that?  How do you pronounce it? How is it spelled? Is she sure?  What are the causes? What are the complications?  Is this a major or minor thing? What is the treatment?  How does she know?  Is she sure?  Why?

I was scared.

Where to begin? Part 1

Cannon's Story...

When we found out we were expecting we were excited! 

I was scared. 

Our first little guy was born early and I had been told that due to the high risk of preterm labor I would need to take a weekly shot of progesterone upon reaching week 16 of gestation.  I felt so extremely stressed due to the fact that the first time I did not recognize that I was in labor until I was at the ob's and was informed that I needed to go to the hospital immediately.  We were hopeful for a full term healthy baby.  At week 32, I was put on bed rest in the hopes of getting to at least week 36.  We made it to week 36 and we celebrated!  Then on day 4 of week 36 my water broke at 8:00pm we arrived at the hospital at 9:30 planning a night full of labor but with barely two pushes and no epidural our little boy was born at 11:56!  We were ecstatic! We were hopeful to not need a NICU stay as we had with our first son; after all, our new little one was born almost "full term".

Our baby boy was very blue/purple upon delivery.  Everyone was very quiet, too quiet. They were rushing around and everyone just kept saying he was struggling to get his O2 up.  We weren't sure on his name but I knew in my heart my little guy was going to be perfect!  After too many minutes of needing oxygen support the determination was made to take our baby to the NICU.  After two agonizing hours of waiting we finally arrived in NICU where our little angel was covered in cords, IVs, monitors, wires and oxygen support through a cannula. We received hurried hushed explanations, chest X-Ray results, swabs for MSRA test and observations made by nurses.  However, once there was a quiet calm the heartache subsided and my heart was overwhelmed.  He was ours, he was perfect, he was created by God, he was our “Cannon”.  We were hopeful that the night would be quiet and soon we would get to be together in a regular room.

That night though Cannon's O2 levels bottomed out and his heart rate dropped too low for too long.  Immediately an EKG was ordered, his oxygen was turned up and suddenly our time line of needing NICU assistance was extended. 

We were told the next day that Cannon's head size was large and high on the percentile chart for newborns.  A genetic counselor wanted to visit with us about this and a head ultrasound was ordered.  We were unphased by this situation because our first child had also had a "large", high on the percentile sized head as well but there was no concerns, as his head still continues to be on the high end of the percentiles and after all this was just what we were used to.  No worries.  Right?  Results indicated that the brain was fine, the genetic counselor measured our heads and said we all have large heads!  We laughed and joked about it saying it must mean our brains were extra large and extra smart.

I worried.

Finally, we were released to special care after just two nights in NICU! We were hopeful for a transfer to a private room, but we knew lots needed to occur.  Cannon had to hold his temperature, eat well, gain weight and his billirubin levels had to maintain or drop.  So much for a little one!!!  We rejoiced when we moved to a private room where we would FINALLY get to stay and care independently for Cannon.  However, Cannon was not eating well, he had lost weight and his billirubin went up.  At each vital check, every three hours, I noticed the nurses rubbing the top of Cannon's head but just thought it must be a normal part of a vital check.  At each daily doctor round check she too, would rub the top of Cannon's head, but again I thought it was a normal check.  That was until I noticed a ridge that was at the top of his head. No one mentioned anything abnormal so I thought to myself it was just the bones overlapping from going through labor.  After a VERY long week stay in the special care private room we were released!!!  We knew the journey would be an uphill push to continue meeting all of our goals, but we were ready to give it our all.  Daily weight checks were scheduled through our doctor's office due to the fact Cannon was not gaining weight and billirubin checks would also be performed to ensure that his levels would level off or drop.

I stressed.

We were hopeful though that once we were home things would get better.  We knew at home I could devote time to nursing and we would be in a relaxed environment not having to record each time Cannon had a wet diaper, dirty diaper, estimate how dirty it was, what color it was, how long he nursed, monitor to the mL how much he was intaking through supplemental bottles, how long it was taking to eat that many mL, his temperature and general demeanor.  We knew we could relax in not needing to call a nurse every time he needed to eat.  We could finally be our "picture" perfect family of four.  We could enjoy our time of maternity and paternity time that was left.  We could look at our baby and dream of his future. 

I hoped.

Cannon's two week appointment came and with flying colors he had gained weight his billirubin had leveled out. We had some concerns with his length of time nursing and as a mom I worried about producing enough to satisfy him but with doctor's advice in tow we were ready to take on the world! 

I rejoiced.

We did have to have another weight check three days later, and this time Cannon had lost more weight.  At this point more advice given, but it was unrealistic and insurvivable.  Feed every two hours around the clock, nurse first, supplement with breast milk after nursing and hope for the best.  Well, because of the original advice given to solely breast feed but just for thirty minutes total and on demand my supply had diminished.  So it took three days of around the clock feeding, pumping, feeding, pumping, feeding, pumping, etc, to build back my supply.  However, Cannon would normally nurse for 20-30 minutes then we would supplement with breast milk which he normally took an hour to complete to which I then would need to pump for 20 minutes to maintain my supply and so I could have enough for the next supplemental bottle. 

I knew I could not continue on like this.  I wanted to enjoy being a mommy and only having 30 minutes if that in between feeds and pumping was not working.  Cannon could not, would not nurse without a shield anyway and try as I may he did not like nursing.  I told my mom at one point I felt so defeated because I felt as though if I wanted it bad enough it would work.  But I did want Cannon to nurse so badly.  I loved being able to nurse Chandler, although Chandler too was a VERY slow eater I was just so hopeful that Cannon would catch on.  Yet, I came to realization all at once in the shower (the best place to think) that maybe just because I wanted nursing to work it was not what was best for my baby.  Why should eating be such a chore for us both when the solution was evident?  So, I decided that I would just pump and bottle feed, at least until we could finally be cleared to not go for daily weight checks because with a newborn, working around a demanding feeding schedule, stressing about weight, stressing about possible sickness at the doctor’s office, stressing about running a household and making sure both kiddos were happy was a lot.  All I wanted to do was focus on Cannon not on the scale and letting my life revolve around a scale was exhausting. 

I cried.