Rouge Valley

Painting of the Scarborough Bluffs outside the NICU

Entrance to the Rouge Valley Centenary NICU

James was now approaching 4 weeks old and was showing good signs of improvement in all areas so the team at Sick Kids transferred him to Rouge Valley Centenary, a level 2 hospital in Scarborough.  We were surprised and concerned to leave Sick Kids at first, but we quickly sensed the competency and liked the space and staff at Rouge Valley.

James no longer needed the regulated temperature and other apparatuses of the incubator, or, "the baby spaceship" as I called it, at Rouge Valley.  While at Rouge, we began paying careful attention to how the nursing staff interacted with James because we would soon be carrying on the care that James was receiving from professional nurses 24/7 ourselves - no pressure...

Mum and James

Mum feeding James with his feeding tube

Dad and James

Nurse Mary Christine and James

James, Mum and his Uncle Jord

One of the best parts of our stay at Rouge Valley was the nature therapy that we were able to experience on a daily basis.  The hospital is situated directly on the north end of the PanAm Path.  This meant that at lunch, Ali and I would walk down to the hiking trails that wander all over the Morningside Park area.

Parking lot path to the Rouge

Walking Path through the Rouge Valley

Bridge from the footpath

There was so much happening around us everyday, and so fast, that the trail became a place where we could slow our pace and truly begin to process the many events of each day in the NICU.  It gave Ali and I a chance to establish the many things we needed to accomplish before James came home with us, review, almost as if prepping for a test, the plethora of knowledge we needed to learn to care for a child who was very premature, and to simply take in a peaceful, quiet, biodiverse environment that breathes at its own pace and is a kind of escape in the midst of tension.  Your world becomes very microscopic after weeks in the NICU out of necessity, it was healthy for us to attempt moments of normalicy such as walking in the woods and placing ourselves in a larger context.

I have always found hiking to be a monastic type of experience where I immediately feel small, and the world begins to open up around me.  A trail will always help sharpen your clarity and focus.  It's stillness can help perspective to resurface.  There is something very human and reassuring in the act of following a path that others before us have formed.  Instead of facing the decision making stress of choosing your own path through an area of wilderness, following a path that you know and trust will bring you to the destination with an ease of mind.  The act of moving without an option of choice, you simply follow the path ahead, releases your mind to peruse other thoughts that continually get undermined beneath the over-stimulation and constant micro-decisions of modern life.  Robert Moor, the author of On Trails: An Exploration, describes that,

"a path is a way of making sense of the world.  There are infinite ways to cross a landscape; the options are overwhelming, and pitfalls abound.  The function of a path is to reduce this teeming chaos into an intelligible line."

The trails were a way for us to chose what path we wanted to travel as parents.  The path of faith, hope, consistency, fun, honesty and love, along with heaps of grace along the way.

James' path was rounding third base and ready to come home 3 weeks after we arrived at Rough Valley.  It was a day to celebrate!  He graduated from the NICU!

NICU Graduation Certificate

Pathways

The development of what we now know about the  brain regarding how it operates, its patterns and capabilities to show flexibility has increased exponentially in recent years.  Neurons in the brain fire, make connections and create pathways adapting to its environment in remarkable ways.  This ability to create new trails, and sever ones that aren't as useful is the realm of neuroplasticity.

Ali and I have been learning about the many pathways the brain creates in order to perform tasks such as movement ever since James was born.  One early morning, looking out a window from the Ronald McDonald House I began drawing comparisons between neuroplasticity and the way that trees grow.

They send out branches, reaching for further ways to progress and develop towards the sun.  A tree is a network of trails and paths, above and below ground, that intersect and make connections in creative ways.  If a certain branch of area of a tree is damaged or is not producing like it should, the tree can creatively work around that area, self-prune, and continue its network of pathways to find success in its environment.  This is precisely the hope and prayer that Ali and I have as parents over James.  That his brain would creatively make new connections and ways to accomplish movement through the possibilities of neuroplasticity.  Every human learns and develops through the brain making these connections and realizing what it can manipulate around them, and this is so important for James in his development.

Movements that come naturally with time for most children such as bending, sitting, rolling, crawling, balancing, bracing, standing, and walking will take many hours/years of intentional training through daily physiotherapy for James to allow these neurological connections to take hold.  The goal is that in time, they happen without thinking.  The spasticity and stiffness that is common in CP can be shifted, because of neuroplasticity.  This road is a long road to travel with many hills and valleys along the way.  No parent wishes these difficulties for their child.  It will be painful.  It will require a summoning of resiliency, patience, grit and stamina to continue on.  The journey James and other children like James will experience will bring them face to face with grappling the unfairness of the world in ways that the majority does not have to.

I have found the current Sick Kids marketing theme so moving.  It speaks to the fighter in every child that encounters medical issues.  It's called Sick Kids "VS".  It promotes the strength of the child, not the weakness of the disease/disorder.

When Ali and I were unexpectedly told that James was being transferred to Rouge Valley Centenary Hospital in Scarborough in a few hours, we quickly packed up our things and prepared to leave.  One of the nurses pulled me aside and described that they have been preparing a necklace for James that symbolizes all of the moments of bravery he had to undergo during his stay at Sick Kids.  Each bead represents a specific part of his medical journey from various procedures to events (NG tubes, CPAP, blood work, MRI's etc.)  This is such an empowering source of internal strength that James can look back to later on.

James' Bravery Beads

So, earlier than expected, James was transferred to Scarborough.  He stayed 3 and a half weeks at Sick Kids.  He would stay at Centenary for a further 3 weeks before his homecoming.

The support that Ali, James and I experienced through prayer, gifts and encouragement while at Sick Kids was immense.  I wasn't always thinking to take pictures in these moments at Sick Kids but I do have a few shots of friends and family that came to visit.  If you're reading this blog and you have some pictures of us together at this time, please forward it to me.  Here's a sampling of the amazing family and community that surrounds us and James.

Papa Boakes, James and Mike

Gran Heeney, James and his nurse

Our favourite nurse Megan

Family visiting at the hospital

Visiting with Lindsay and Tim Wadsworth, and Lydia

Visiting with Mike and Christine Armstrong, and Dar and Mike Costas

James will tell his story

After a couple of days of arriving at Sick Kids, our nurse Shantelle asked Ali if she would like to hold James for the first time. She organized the lines, set up James' biliblanket (phototherapy for jaundice), situated Ali in the chair close to James and carefully passed him to her. It was such a beautiful moment.

First time holding James

James' initial ultrasounds revealed a brain bleed that needed further investigation.  We listened to the rounds each day and asked a spectrum of questions to the team of doctors and nurses to try and catch us up to speed with what James was experiencing.  There was so much to learn.  Brain bleeds were quite common occurrences for early preterm babies and for many they healed over time.  We began to hear stories from well intentioned people about how their babies were also preterm and just needed more time to develop.  Or, that they knew of someone else who was a premie and now that they are older you would never tell.  And although these stories were hopeful, it didn't quite seem to fit our reality.  Two weeks later during one of the doctor rounds they asked to speak with Ali and I after the rounds were over.  I knew I wasn't going to like what they had to say.  The doctors said that they had found results in the MRI scan that suggested some damage had been done to specific areas of his brain due to the lack of oxygen at birth.  We were told that James would very likely have spastic diplegia, a form of cerebral palsy, which is a movement disorder affecting primarily his legs and gross motor ability.  However, the doctors also said that even though this damage is present in the MRI, the brain has plasticity, meaning it can create new pathways and rewire as we challenge James in reaching key developmental milestones.

The phrase that stuck will Ali and I during this consultation was that "James will tell his story".  There are a number of ways to interpret this statement.  At the time, we were holding onto the hope that James would not have CP at all.  Even though it was very likely he would have CP, we held onto "James will tell his story" as a kind of postponement of diagnosis.  The doctors encouraged us to do this.  James hasn't shown any signs of CP because is was still so young.  Our prayers were that James would "tell his story" of recovery despite scans that suggested otherwise.  After all, he was only a couple of weeks old.  He would have years to develop, and 'who cares if it takes him longer then most to meet his milestones' I thought.  As time passed, "James telling his story" has become more about him revealing to us his abilities.

One afternoon after the conversation with the doctors, I walked down to Nathan Phillips Square to apply for Ali's PCIC and maternity leave benefits.  On my way over I couldn't help but replay these conversations over in my head and question what the future would look like for my little boy.  How severe would this spastic diplegia be?  Would he be able to walk?  What would school look like for him?  Recess?  Would he need assistive devices to get around? How might this cause limitations for James? These questions and a host of others came as a flood of worry.

As I was walking down Bay Street I noticed these sculptures installed on the edge of the sidewalk.  They were entitled  "The Brain Project".  It's aim was to raise awareness and funding for brain research at Baycrest Health Sciences. It is a series of 100 unique, diverse, colourful brains.

"The Brain Project" displayed on Bay Street at Yonge and Dundas Square 2016

At the time of passing by the art my mind automatically recalled the conversations with the doctors and of James' brain development.  I internalized this public art installation as a reminder to pray for James.  It was an unexpected, meaningful bridge between my personal world and the public realm of Toronto.

I would later come across a term I hadn't heard before - neurodiversity.  It aims at levelling the playing field for what is considered normative social neurological dispositions.  It argues that neurology, not unlike ethnicity, gender, or sexuality, is best seen on a spectrum.  The socially accepted neurotypical brain does not necessary mean it is more natural while other brains are deficient.  They exist in the colourful and varied world of diversity as well.  This art installation places the concept of neurodiversity right alongside the urban connectors and pathways of the city streets, roads, sidewalks of Toronto.

My prayer for James became a request for new connections to be made in his brain and for new pathways to be formed that would stimulate his growth and development. We encouraged our family and friends to pray for this along with us as well.