Ronald McDonald House

After the first sleepless night in the waiting room, my parents booked Ali and I a hotel nearby for the second night.  The practicalities began to set in as we began to have more exposure and time in the NICU life.

These things need to be done now, if not sooner:

• I needed to get on the phone and salvage any cancelation I could for every accommodation and flight for our Iceland and visiting Emily and Luke in England trip.

• Meet with social worker

• Meet with Doctor's during their rounds

• Start the Certification forms for James with Service Canada

• Apply for PCIC (parents of critically ill children) leave for Ali

• Kickstart Ali's maternity leave by contacting her work and applying for EI

• Research walk in clinics for Alison to have a check up post birth

• Contact my work and union

• Find a cheap location where Ali and I can stay while our son is at Sick Kids

• Connect with family and friends with updates

• Coordinate a schedule for visiting times between our contacts

• Find ways of sneaking eating and sleeping into our days

• Oh, and Ali had to pump every three hours, since James was too young to breastfeed

• Kangaroo care (holding skin to skin with your baby) could happen after James' feeding times every two hours within the short window of allowing him to sleep and not be disturbed during handling times

So, as you can tell, add the emotional pull of concern for your son and serious lack of sleep and the anxiety levels were through the roof.  Walking from the hotel to Sick Kids that morning, I felt a wave of exhaustion I haven't experienced before.  It was like my body was powering down.  I felt nauseous and needed to sit down for a moment.  Ali went to get us both a coffee and I sat down in the atrium beside the water feature.

At this moment, waiting at a small table for two and placing my head on the table in exhaustion, I heard the sound of reassurance and of providence.  Water cascading over the separate platforms reminded me that life always moves.  It shifts and adjusts to its environment in unexpected ways. The sound of water was so calming, it slowed my breathing and regulated my heartbeat. My nausea passed and I felt a renewed energy.  I could sense a serenity that went beyond my understanding.  I was reminded that life, through the metaphor of water, is resilient.  Water sustains living beings throughout all of the mysteries of the seasons we find ourselves in.  The subtle, muted trickle of this water feature was placed in the middle of the atrium, the gathering place for those living in tumultuous times.  It was a reassurance to me that God had James under his provision and that we would make it through these difficult times.

After the day of tackling my list, with the help of my amazing mom, and visiting James I was told that the social worker wanted to see us.  We had been accepted into the Ronald McDonald House to stay at a subsidized cost for the remaining time that James was at Sick Kids.  Relief washed over me.  As the staff member showed me around the place I began to cry, the thankfulness in my heart could not be held back.  We were in walking distance to the hospital, surrounded by other families living a similar reality, and they even provided meals and suggested we bring guests over to eat with us during our stay.  They were an absolute answer to prayer.

Ronald McDonald House Main Lobby

Ronald McDonald House Courtyard

Jordan, Angelica, and Aurora had a welcome message waiting for us at our door

Jordan, Angelica and Aurora

Ronald McDonald House Room

These ducks may have been for the kids...

The NICU

If you haven't experienced the busy, high-tech world of a NICU (Neonatal Intensive Care Unit) before, this description will hopefully give you a glimpse:

You are permitted into the NICU by the front end staff (only 2 per child allowed in at a time). As you enter, you will see a ward filled with competant staff responding to the needs of each baby. James, like many premies, had his incubator complete with CPAP (continuous positive airway pressure), an IV line with various electrolytes, proteins etc., regulated temperature, a billy light for jaundice, NG feeding tubes and a variety of other medical devices that I won't even pretend to know much about. The goal of the incubator was to simulate the environment of the womb.  Since it has been just over one year since James was in the NICU for a total of 66 days (including Rouge Valley Centenary), I have had some time to reflect on the experience.  I've come to view the NICU as a world in limbo.  It is like a portal of life surviving in-between opposing worlds.  It is not the womb, but it tries to be; and it is not the world outside the womb either, as the incubators and medical staff try to prepare each baby to become as independent as possible.

James in the NICU at Sick Kids

The buzzing and beeping of a variety of monitors are as constant as the birds chirping in the morning. The whole scene of babies in incubators and teams of people serving their every need around the clock is overwhelming.  As a parent, you are immediately struck with a sense of dread knowing that none of the narratives of these little babies went as expected. Shit happens. The cards that these little babies were handed in life were not shuffled fairly. There is a tangible weight of serious concern that rests on the faces of any of the visitors to the NICU. There is also an unspoken bond between the parents and caregivers that you pass in the hallways. You don't have the mental space or time to talk to those around you, but you know that they are also walking through a similar darkness, and everyone is doing everything they can to serve these little ones.

View from elevator

The 3rd floor of Sick Kids is the NICU

I want to highlight the staff at Sick Kids for a moment. The best of humanity can be experienced here. After experiencing the NICU and having over 20 different nurses, I've concluded that if any tourist from outside of Canada was visiting Toronto (or any local Torontonian for that matter that hasn't experienced Sick Kids) I'd encourage them to simply walk into the main atrium and observe.  As you look around you will be struck with a sense of empathy and a realization that every child in this place is a fighter and has demonstrated more resiliency and courage in life then most adults.  There is a culture of excellence and a spirit of collaborative diversity that brings out the best in what Toronto has to offer the world. It is a truly remarkable place.  Nobody wants your child to experience the trauma that brings them to the doorstep of Sick Kids, but it is relieving to know that you are in the care of some of the most competent and prepared people you will ever meet.

Surprise!

Lets begin a week before his birth. Ali and I booked our trip to Iceland to have one last travel experience before our first child and to celebrate our 5th anniversary. Ali had seen the midwife a number of times throughout the pregnancy and was told everything was progressing well and there were no concerns regarding travel. Her family doctor also agreed. Our plane was scheduled to leave for August 3rd. Ali saw her midwife and doctor the week before on July 23rd and July 28th and she was told to "have a great trip". Our bags were somewhat packed and pushed to the side of our room.

On August 1st, Alison finished work at the Abilities Centre, came home and said she needed to lie down for a bit as she was experiencing some cramping (a symptom she read could be linked to the urinary tract infection she was on antibiotics for just 4 days ago).  As Ali was entering the third trimester of her pregnancy she also read that Braxton Hicks contractions could begin. Another concern she read when she was resting was the chance of cramping being a sign of miscarriage. There were lots of possible explanations but never did the thought of labour starting this early cross our minds. The cramping became stronger, eventually turning into contractions.  We called the midwife and she asked us to meet her at the hospital not knowing what was happening.

Ali and I in the front seats, Luke and Lydia in the back (guests for dinner that night), we quickly arrived at Lakeridge Health in Oshawa. Ali was already bleeding as we were walking in the hospital scrambling to find the Labour and delivery room. We were both thinking that this was going to be a miscarriage as we had not anticipated a 28 week gestation as a reality for the birth of our child.  We were not prepared.

The medical staff wanted to transfer Ali to Sunnybrook because they are more prepared for early preterm births.  However, the labour began so quickly that they didn't have time. I began to quickly text family about what was happening in between answering questions of Ali's medical history. Around roughly 2 hours after we arrived James was born at 9:56 pm weighing just 2lbs 8oz ounces.

A team of over 10 staff were in the birthing room working away like ants in a colony. In the midst of the stress I knew that something was wrong. James wasn't crying, and when he was born the doctor quickly handed him over to a team that began intubation attempts.  In that moment, I lost all sense of time. All I remember is that he did start to breath after awhile with their support (Later on, I found out that it took 6 intubation attempts). They immediately dispatched for a Sick Kids transfer medic team to take James downtown and asked me "would you rather stay with your wife or go with your son down to Sick Kids?" I froze and didn't know how to respond.

I had some time to decide while the Sick Kids transfer was on their way.  I went back and forth from James' incubator room to Ali's recovery room. As the medics arrived I decided that I would stay with Ali and that my dad and mom would drive us down to Sick Kids.  Luke and Lydia drove my car down behind us.

It was incredibly hard to believe what had just happened as we traveled down to Sick Kids in the early hours of the morning on August 2nd in my dad's mustang.  The lyrics of an All Sons and Daughters song kept running through my head, "It's Your breath in our lungs, so we pour out our praise".  Something so common and mundane as breathing now had a whole new meaning to us.

Emily (Alison's sister) created this calligraphy that we now have in James' room

After giving birth just a few hours beforehand, Ali fell asleep in the waiting room along with Luke, Lydia and myself.  And to think that in only a day and half Ali and I would have been on a flight to Iceland...