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.