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...

Welcome

The journey that Ali and I have experienced as first time parents of James Michael is unlike anything I could have ever imagined beforehand.  It has truly taken us into uncharted waters.  In an attempt to summarize many of the reoccurring experiences, I can highlight three kinds of moments so far in the journey with James Michael: At the beginning, there were many moments of fear, grief, confusion and anxiety that leaves you with the experience of crying out for help but your voice seems but a whisper in a storm.  There have also been many moments along the journey where hope, trust, and a tangible sense of the immense blessing of family and friends stretches and covers your fears for a time and tells you that “you are deeply loved”. Finally, a third category of moments exists (which is by far the majority of time) where it requires a summouning of patience and an ability to wait and see as the slow pace of time advances as James “tells his own story” of what it is like to live with cerebral palsy.

I (Mike, James’ dad) have been meaning on writing this blog for quite some time now so that it can be a place for our family and friends to “journey with us”, and so that it can also become a record for James to access as he grows.

Thank you for taking the time to follow along with James.  I hope that you find this blog to be a place where you can enter into the world of James Michael, and Alison and I as parents, experience the ups, downs and plateaus that are a part of his life, and gain a ever increasing appreciation for how amazing the journey of life is.

* Compliments to Rebecca Fortin for the homepage photo of James