Joyce’s Story: Life inside (and outside) the incubator

By: Josefa Chan and Joyce Chan

June 2014

From Josefa (Mom):

Joyce

As a mother of two preemies, I want to share my experiences with parents who are facing what I had gone through almost 21 years ago. My hope is that the story of my children may encourage them while they are facing difficult situations.

Flashback to 1993, and due to my severe pre-eclampsia and critical condition, I was rushed to Mount Sinai Hospital. There, I delivered my eldest daughter Joyce by an emergency caesarean section. Before the delivery, the pediatrician had told me what to expect with a three month premature baby: If my baby survives, she will definitely have a very rocky start, and there were the possibilities of brain damage, respiratory problems, and blindness.

Joyce was born three months premature at two pounds and seven ounces. Since her lungs were not well developed, I had delivered a silent baby. She was then quickly taken care of by the medical team and placed inside an incubator. It was heart breaking and scary seeing my miniature Joyce covered with different tubes, wires and monitor pads.

Joyce survived from bleeding lungs after surgery on her second day of birth. Against all odds, she gradually gained weight by grams, and took more milk by milliliters. She no longer forgot to breathe, and had fewer tubes and wires covering her body. And finally, I could bathe her in the famous salad bowl just outside the incubator. After two months, she graduated from the NICU, weighing four pounds. I am very grateful to have had one of the world’s best medical teams looking after Joyce, and from whom I had learnt how to take care of her at home.

The early years for Joyce were absolutely challenging, especially when she was hospitalized for very bad pneumonia. Trained by taking care of a little girl who got sick so often, Joyce called me “Doctor Mom”! Despite the difficult times, Joyce was a happy and intelligent baby; I remember she had called me Mama at eight months old corrected. Now, she has grown up into a healthy and smart young lady with a big heart.

As a mom of a preemie, there were moments of anxiety and emotion: Will my baby girl be alright? Will she forget to breathe again? How will I produce enough milk for her? When people stared at me and my small baby, I wondered why they did not ask me for the real story, instead of forming judgments. Even when she was brought home, the questions continued. Will Joyce get pneumonia for the fourth time if I let her play in the snow? Will she stand up for herself if she is bullied at school? I do not know how many nights my pillow was wet with my tears.

Of course, there were also countless joyful moments: When Joyce cried for the first time; when she always giggled whenever I said peek-a-boo; when she finished the whole bottle without spilling any; when I witnessed her achieve every small step. Then, when she drew me beautiful pictures, made me pretty cards and crafts, and when she entered university with top scholarship.

All in all, I cannot ask for a better daughter; I am so proud of her, and thank you Joyce for making a better me and a proud mom!

 

From Joyce (Daughter):

Joyce

A newborn baby pierces the room with a cry for air, and with her eyes open and fingers outstretched, she is ready to explore the world. That was the delivery my mother should have had, but when I arrived three months early, the surgical room was silent. Before even seeing her baby, the doctors whisked me away. They later revealed that inside a body that was smaller than a tissue box and weighed about two oranges, my lungs, eyes, and immune system were very underdeveloped.

Improvements in my health over the next weeks at the NICU can in part be attributed to the fantastic health care team who had so much knowledge and dedication. Their ability to console worried parents, and to openly communicate about their child’s health, makes them a source of stability and honesty during unpredictable times. Despite the excellence of the health care team, I would not be leading a healthy life today were it not for my parents.

My birth was risky, but my parents were the true risk takers.

Often the odds seemed stacked against my survival, but my parents still committed all of their love. Questions of whether they would be able to see me grow stronger, reach my first birthday, or my high school graduation crossed their minds every day. What kind of music, sports, and ice cream will our daughter like? Typical questions that other parents would certainly find answers to in time. Yet, for parents of premature babies, there is a fear of not having enough time with the child.

I admire that when facing this uncertainty, my parents acted with courage and hope, holding on to that silver lining. And even though they initially did not know how to care for a baby so small and with specific health needs, they took every opportunity to be involved and to learn.

After the stressful months at the NICU, I was finally permitted to go home – but it was not smooth sailing yet! Every night my parents’ sleeping was interrupted with the crying of a baby who did not want to rest (or cooperate during meal times, baths, or trips in the stroller for that matter). During elementary school, guess who had to help out on projects about pioneers, prairie dogs, model cars, and Costa Rica? Dad and Mom.

Fast forward to this September, and I will be entering my fourth year of undergraduate study in the Arts and Science Program at McMaster University. Now it seems that I am the one asking a lot of questions: in which direction is my career, and how am I to tackle this thesis? Despite living more than an hour’s drive away from home, they visit me on weekends, bring me delicious food, and are quick to offer sage advice.

This story began on a slippery slope, but I am grateful for where we are today. The small scars on my arms and heels from the needles I had relied on almost 21 years ago in the NICU still remind me that life is a gift. Above all, the scars remind me of the support, strength and unconditional love of my parents since day one.