Congratulations, do you know if you're expecting a boy or a gril?
(Disclaimer: This article is talking about a medically fragile child)
How many of you are moms or moms to be? We can all relate to the excitement and anticipation of waiting for our little ones arrival. As mother’s to be, we go through various nesting stages to get settled and set up for the baby and make sure that everything is as perfect as it can be for the growing family.
A little about Mandy and the family...When I, (Mandy) was expecting my second child, I was told that the infant had a spot on his brain that they could not really identify with. The thought was that the baby was going to be born with a syndrome called Dandy Walker Syndrome. They came to this finding due to a spot on Austyn’s brain and because of his failure to thrive during the gestational term.
During the last weeks of my pregnancy I could only think of the challenges my son was going to face. With the preliminary diagnosis they gave him, he was going to have brain surgery within the early days of his life to prevent fluid from building up in his brain.
Finally, my delivery date arrived and the doctors felt it was best to go ahead and induce labour. Little did I know things were only about to change for me and my family for the rest of our lives.
The labour started very quickly and instantly my son was showing signs of distress. His heart rate continued to drop with every contraction and pick back up as soon as the contractions would come to an end. With every contraction the nurses appeared to show more concern and did various things like change my position, having me drink and having me control my breathing as the contractions would happen. Through all of this nothing seemed to make a difference for him, however I was progressing quickly through labour so I was hopeful to meet him very soon. As always, labour progressed to the point of pushing. While I really wanted to get my son out of distress I was so scared for the pushing part as I had already done this once before! The nurses quickly realized the cord was wrapped around Austyn’s neck and did everything they could to monitor him during the last phase of labour. When Austyn was born, there was such a loud silence that instantly became present in the room. Our baby was not breathing or crying, he was not responding to anything the nurses did. They quickly called the NICU (Neonatal Intensive Care Unit) and filled the delivery room with so many yellow and green coats. I remember asking what was happening and they couldn’t tell me anything. An eternity seemed to have passed when the doctors finally looked at me and said you have a baby boy! He sure had us all worried but he’s here and he’s fine. I have never cried so much and been so thankful in all my life.
The doctors did all the tests and checked his brain (again) and decided my son had a clean bill of health and we could go home. Finally, a clear head to toe bill of health and we are on our way to pick up our 17 month old and head for home.
When we arrived home and walked into the house, this feeling of nostalgia came over me. My life with my kids was finally here! I just gave birth to this tiny little human… OMG he’s mine! The thoughts and feelings came flooding to my mind. Suddenly, this tiny adorable human started throwing up out his mouth and nose and his skin was turning blueish greyish and all he could do was make a faint gasp for air. This went on for several weeks but he would NEVER do this in front of a medical professional so we could understand what was happening. At one point, I’m certain that the family doctor thought I was crazy or something as my concerns were dismissed week after week.
Finally, on December 1, 2003, I took Austyn to the emergency room at The Children’s Hospital of Eastern Ontario. I was so afraid for my sons life at this point. I have no idea how many times I had to save him but I knew I was scared to sleep a wink because this little boy was so fragile and no one but his father and I understood what was happening. After a long wait at CHEO I was relieved to finally see a doctor only for the concerns to be dismissed- my son appeared healthy. The doctor gave a full break down of what to do in the event of a situation like this in the future and recommended an infant CPR course. Just as we were about to walk out with the doctor, my son STOPPED BREATHING! I started crying and begged for help! My son was admitted that night and kept under strict watch. They clearly saw what was happening and how quickly my son took a turn for the worst and hardly left him out of their sight. On the night of December 2 into the morning of December 3, my son took a terrible turn for the worst and his heart completely stopped. The doctors worked on him for a short time and got him breathing on his own again but I knew in this moment that our son was very sick. There were going to be a pile of up hill battles in the days, weeks, months and even years to come.
My son was diagnosed with sever Gastroesophageal reflux disease (GERD) causing A Life Threatening Episode(s) (ALTE’s). My sons sphincter valve was allowing the undigested food to leave his esophagus and enter his lungs causing him to aspirate on his stomach contents and leave him with a feeling of drowning. These episodes would occur with every feed and continued to worsen with age. By the time my son was 1, I figure he stopped breathing in excess of 150 times. Austyn’s life outside the hospital was unlikely unless the doctors could get him to stop having the ALTE’s. On December 23rd, we were given a pass to take our son home for the holiday’s with the plan to return Boxing Day. We had the necessary medical devices for Austyn to sleep with and oxygen in the event that his oxygen levels dropped. By December 24th, we were right back in the hospital and stayed there into the New Year.
During the first 18 months of life, Austyn was in and out of hospital for different reasons; sometimes we were admitted and other times we would just have day procedures or appointments. The nursing staff at CHEO were remarkable. My son was so spoiled and loved by all the nurses of 4 East, THANK YOU!!
Finally, after 18 months and many differences of opinion with the Gastroenterology the surgery was approved and my son was going to have a life with his family outside of the hospital while meeting his other doctor appointments for various uncertainties. Austyn was often referred to as the anomaly in many scenarios as he grew up. From infancy he was demonstrating all the signs of autism- delayed speech, motor skills were slower, gait stance, social unawarenesses and “independent”. From a very young age he grew a fixation to dogs and hasn’t lost sight of this passion 14 years later. My son has made me so proud when he didn’t even know what the word meant. He has taught me some of the most valuable lessons and helped me identify virtues that are the most important. To date Austyn has been diagnosed with select mutism, autism, ADD/ADHD, oppositional defiance disorder with sensory issues, epilepsy and juvenile behaviour.
With Austyn having autism and epilepsy that is worsening, it’s tough working too far away from Austyn’s school or routines in the event Austyn needs help with his day-to-day or assistance with medical issues. Mom Wins allows the family a small second income that is able to care for the kids and some of their needs at the same time as Mandy is able to be flexible to the kids and their routines. It’s been very rewarding creating Mom Wins and has allowed us to view some of our adversities as our strengths.
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