It was a cold and rainy morning when I drove to Mount Sinai Hospital in the middle of fall. I had taken that drive hundreds of times over the last 6 months. That morning, however, it would be the last one I drove with an empty car seat. On the way back home later that afternoon, I was going to have my miracle baby Gabriel with me.
Gabriel was born at 26 weeks gestational, 14 weeks ahead of time, to our surprise, weighing a mere 2 pounds. My surviving twin spent 146 days in the NICU and that morning he was finally going home, still on oxygen, but nevertheless going home.
During our NICU stay we were part of a pilot study called Family Integrated Care, which encourages families to be part of the team and care for their babies despite of their size and condition. I had spent over one thousand hours by his bedside and attended education classes 5 days a week. Therefore, I knew very well the risks of Gabriel getting sick once he was discharged. A simple cold would not be a simple cold for him. Because he was born so early, his lungs were very premature and it would be a while until he was strong enough to fight germs like a full term baby. It’s on the third trimester of the pregnancy that the babies get a boost to their immune system. I had missed the entire trimester. Gabriel’s immune system was fragile and I had to be extra cautious during the coming winter months, when everyone seems to get sick.
I had a plan in mind leaving the hospital. My plan was to hibernate. I locked myself inside the house with him and we only went out for doctors or therapists’ appointments. I bought boxes of hand sanitizer and it was almost part of my home décor. I had spent months ‘brain washing’ my 3 year old son, Thomas, to hand wash as often as possible. I knew I had to keep him healthy so no germs would come inside the house, but he was in a full day Montessori school in the peak of the flu season.
Half way through December, Thomas came home coughing. I panicked and isolated Gabriel in his bedroom with his oxygen tanks and monitor. Two days later, he started to cough and I knew he wasn’t breathing well. Back we were at the hospital and my little guy admitted with pneumonia. It was a hard time. We spent Christmas in total isolation in the Intensive Care Unit at Sick Kids Hospital.
Two weeks later, he was home and I was scared that it could happen again. From January to March, I didn’t leave the house and no one came to visit us. My grocery shopping was done on-line. I made my husband change his clothes after work before touching Gabriel. I isolated myself and by March I wasn’t feeling great.
In the beginning of spring, one of Gabriel’s doctors asked me how I was doing and he reassured me that he was stronger and it was time for me to get out of the fight or flight mode. So, one Saturday morning I decided to pack the diaper bag and go out with the kids to a shopping mall with the oxygen tank and monitor. I felt I was seeing life for the first time, everything seemed so fast paced. It was a fun morning walking around the mall with the kids and for the first time in months I felt a sense of normality.
It was time to get life back, to do the things we always loved to do as a family. I realized that being healthy was more than not having pneumonia or the flu. Being healthy for us meant living life to the fullest, enjoying what we have today; celebrating the little things, finding the balance that we all strive for.
It was a hard winter for us as a family and if I could do it all over again, I would have left Gabriel with my husband for a couple of hours to do grocery shopping or to go for a coffee with a friend. Or perhaps, I would have gone for dinner to a nearby restaurant with my husband for an hour or two. Hibernating did not prevent Gabriel from getting sick and made us all feel the winter blues. On our second winter, I did everything I could to find some balance so we could all enjoy the cold months.
To all families recently discharged: keep a good hand washing routine, find someone you can trust to leave the baby for one hour or two, go for a walk, ask for help, invite a friend to come over to have a cup of coffee with you. These are little things that can help you get through the first winter with your miracle baby at home.
Enjoy it! After all, the NICU days are now a memory.
This post is part of the #HealthyThisWinter Campaign sponsored by AbbVie Canada. The experience and comments listed above are my own.