The History. Part I

So I used to be a nurse. I come from a family of nurses, Mom, Dad, Sister. So inevitably, I became one too. It was in my blood, my dad likes to say, but I loved every minute of it. Truly.

My husband Drew, and I married in 2005 and supported each other through school,

I started with my nursing at Bow Valley College and continued my studies for my degree at Athabasca. Drew took Electrical Studies at SAIT and is now a Project Manager/Estimator at one of the companies that work primarily within Calgary’s hospitals.

I used to work at the Peter Lougheed Centre first in Vascular Surgery, where I loved my job with all the acuity and intensity. Then afterwards, when Drew and I wanted to spend more time focusing on our little family, I took a job at the NICU there, where we took care of the “feeders and growers.”

We had our daughter Kate in 2009, and she was a joy.
We were a fun little family.
Things were good.
Happiness came easily to us for the most part.

Then we decided to shake it up a bit. We got pregnant with another baby in 2013, decided we needed a new place to house our expanding family, so we bought our dream home in Airdrie, where we figured it would be a nice small community to raise our children.

Kate would start preschool in September, and I would be studying more to finish my degree. It seemed like a great plan.

It did get a little hectic, so we even decided to slow down and take a last minute vacation to Victoria where Drew’s mom lived. 8 months pregnant and hoping not to deliver in BC.

But all went well, we arrived home safely, and Sam was born on August 23, 2013.
It was a traumatic birth for both of us. My water broke at home, and I didn’t progress as fast as I should have, so we used meds to help us along.

He struggled, and when he arrived, he was flat.
His APGARS were 1, 5, and 8 after vigorous suctioning, CPAP and bagging. They worked so hard on him that he had quite a bit of bruising around his mouth for days afterwards. That bruising hid the blueish lips that I would come to know so well.

While cuddling with him, I automatically assessed him. You can’t really turn that nursing instinct off. I saw he was grunting with his effort to breathe. His oxygen sats were still low, so the team, who I knew well, brought him to my NICU for some oxygen and feeds.
By midnight that night, we were reunited and were sent home the next day. I was pretty sure I was capable of handling anything this kiddo could throw at me. Besides, I had a house to finish packing. We were moving in 6 days.

He was a feisty baby at home, loud,  irritable and always starving, it seemed. But oh so adorable.

On that day, Drew was working half days so he could come home and help me with Sam and finish packing up. Kate had gone on a date with her Grandfather to see a movie that afternoon and wouldn’t be home for a few hours. I put Sam to sleep in his bassinette beside me and got to work.
I remember looking at the clock and thinking that it had been a while since he fed last. He was cluster feeding at the time, every 2 hours and it had been about 3.5 since the last feed. I went upstairs to rouse him.

At first, I noticed how clammy he was. It was a warm August afternoon but not anything that should make a baby sweat. He wasn’t bundled at all, and despite being soaked with sweat, he skin was cool. Then I noticed his breathing. I counted his respiration rate and had to do it twice because I thought I must have made a mistake. It was 144.

I remember calling Healthlink, and they said we needed to go to the Children’s. Drew was on his way home and we decided to drive to ACH. I sat in the back with Sam and Drew drove. Sam was inconsolable, wailing, It only took maybe 15 minutes to get there, but it was almost too late. Sam’s eyes started to roll, and he stopped crying. When we were driving beside Market Mall, I ripped open the car seat belt and gave my 5 day old son a sternal rub to keep him alert. I remember telling Drew to run the red light.

We left the car with doors wide open right in front of the ER doors. I passed Sam to Drew as I was stuck between car seats and he ran inside with him.
By the time I got inside, he was already in the trauma bay. There was no delay, and he was instantly surrounded by the staff. I remember standing there, motionless with tears streaming down my face feeling like it was a movie. They intubated him immediately and tried to get IV access, but since he was so shut down, they rehydrated the tiny stump of an umbilical cord and got a line through that. It was about an hour before he moved to ICU and we were sat down in a small room where we met our cardiologist for the first time.

I loved her immediately. She was as shocked as we were. She started to draw pictures.  She asked us about prenatal care and if we had ultrasounds. I told her we had several, even 3D imaging twice because Sam wasn’t cooperative showing us his face.

Then she drew Sam’s heart and it was drastically different.
Sam’s diagnosis was Hypoplastic Left Heart Syndrome.

The left side of his heart had not fully formed in utero. He had an atrial septal defect, a minuscule left ventricle, his mitral valve was narrowed, and he had a coarctation of his Aorta. The right side of his heart was trying to provide his entire body with adequate circulation, and when the ductus started to close, he had gone into heart failure and then cardiogenic shock.

She told us that Sam would need multiple open heart surgeries and multiple cardiac interventions and despite that, his heart would never be fixed. Palliative, not corrective surgery was our only option. And they would all have to happen before his 5th birthday.
As she was telling us all this information and trying to explain what our future with Sam would look like, these multiple surgeries, constant medications, the probability of a heart transplant, we saw a transport incubator roll by. Sam could not be treated here in Calgary, he was headed to Edmonton immediately for life-saving surgery, and he was leaving now.
Drew and I kissed our newborn baby, watched him loaded into an ambulance, taken to the airport and be Med-evac’ed to the Stollery.
The cardiology clinic nurse brought us gift cards for gas, groceries and a list of places to stay in Edmonton. We went home, called our family, packed bags for ourselves, our 3 year old daughter and our baby. We never returned to that house. While we were gone, our family and friends packed it up and moved it all to the new place in Airdrie.
My father in law drove up with us to take care of Katie while we were with Sam. We were in a daze and couldn’t believe any of this was real. It had been a matter of hours and our whole world, our future had changed drastically.

Part II to follow.