Skye Inez Taylor
(24 June 2019 - 21 December 2019)
On Monday, 24 June 2019 at 6:03 am, we welcomed our firstborn: Skye Inez Taylor. Skye is our miracle baby and completed our family.
The pregnancy was smooth - no morning sickness and only the excitement of a growing baby belly. The labour and delivery lasted 10 hours; and Skye and mom were healthy and discharged from the hospital the following morning. When we took Skye home, she fed well, cried loudly and passed her next two paediatrician check-ups. We took her everywhere: hiking, shopping, road trips, to work.
By the time of her two months check-up, her breathing sounded like she always had congestion. The paediatrician did not feel that was an issue when listening to Skye's chest. By three months, we were concerned of her lack of neck control and limb movements and practiced more exercises with her and saw minor improvements. By the time of her four-month check-up, she developed a cough, slight curve in her spine, and was very hypotonic. The paediatrician was concerned about her motor delays and referred us to see specialists.
The following week, the referred neurologist arranged for us to see her professor to have an electromyogram (EMG) nerve test performed on Skye. Upon reviewing the nerve test results, the professor clinically diagnosed Skye with SMA Type I and stated that Skye was not expected to live past two years of age. He offered the ray of hope through the drug Spinraza which will halt progression of the disease but informed that she will not be able to crawl or walk. Our world shattered as our sweet girl smiled and babbled to everyone in the room. However, we held on to hope and believed that Skye would respond well to Spinraza.
Due to Skye's coughing, the neurologist directed us the next morning to report to Toronto's Hospital for Sick Children to have that monitored. Apart from her cough, Skye looked well and passed her overnight sleep and respiratory assessment. Within five days, Skye experienced fevers and a harder work of breathing and was transferred to the Critical Care Unit for BiPap support. Two days later, she went into cardiac arrest and was resuscitated. The compressions resulted in pneumothorax and pneumonia and she had to be subsequently intubation. Witnessing her cardiac arrest and unconsciousness from the sedation was traumatic. A week later she was smiling and alert; and her 5 months birthday was approaching. Since she was in the hospital, we asked family and friends to submit birthday video greetings for Skye. Skye enjoys seeing herself in selfies and watching videos.
After her pneumonia passed and three attempts at extubating, Skye was on hi-span BiPap with secretion management every four hours. In parallel, she tested positive for Respiratory Syncytial Virus (RSV) and became weak to the point that slight movement could result in rapid oxygen desaturation. During her last days, she had respiratory failure and passed comfortably in mommy and daddy's arms.
We will forever love and grieve for our baby Skye. Skye has deeply touched our lives and those around her and made us better people. She is always in our thoughts and we continue to do things to remember and honour her.
Christmas Poem 2019
Christmas time and every time you are always in our hearts
Christmas time and every time you are always part of us
Even though you are not here,
We sense you everywhere
Oh Christmas time and every time please hear me sing to you
Oh Christmas time and every time please know that we are near
We will never let you go
Your spirit will live on
It lives in everything I do
I will always fight for you
I will always care for you
I will always dream of you
I got to see who you were to become
And I am blessed and proud of you
I am blessed and proud of you
I hope you see and hear me now
And know that I love you
- Winnie Luk-Taylor, in memory of:
Baby Skye, June 24, 2019 - December 21, 2019
First published: 16th January 2020