Benjamin and I were married in 2015 and were anxious to start our family. With no success after a couple years, we turned to fertility treatments which was a journey in itself. We were over the moon when we learned in October 2018 that the treatment was successful, and we were pregnant.
We found out at an early ultrasound and fetal echo that our daughter would be born with Congenital Heart Disease and had multiple heart defects. Her diagnosis was Tricuspid Atresia, Hypoplastic Right Ventricle, VSD, Pulmonary Stenosis, and Bilateral SVC’s. Our world shattered. We had waited so long to start our family and our hearts ached. The following months were really difficult, filled with uncertainty, a ton of appointments, and a lot of research for what our new norm would look like.
Our beautiful baby girl was delivered via C-Section on July 1st – our Canada Day baby, and a true cause for celebration. I remember being a bundle of nerves, as I knew she was safe inside me, but as soon as she came out she would need medical intervention. After she had been assessed, hooked up, and given medication, I was able to hold our little girl for a few minutes before she was taken to the David Schiff NICU at the Stollery Children’s Hospital. Watching her being wheeled away broke my heart, but I knew she was in the best of hands.
Maelee was in the NICU for 20 days. She had an ostomy surgery at 3 days old and her first heart surgery at 2 weeks old. Being at the NICU every waking moment that we could, became our new normal. Leaving the hospital each night without Maelee was disheartening. I would sit in her empty nursery and call the NICU nurses while pumping in the middle of the night. She was discharged from the Stollery on July 27th, 2019. Being sent home was the happiest and most nerve-wracking day of our lives. Being a first time parent is difficult in itself, but to bring home a medically complex baby is a whole other ball game.
There is something therapeutic about talking to other NICU families during your stay. We would often be feeling sorry for ourselves, but once we heard what everyone else was dealing with, we didn’t feel so alone. Be a listening ear for those families. The fear always sets in that you will miss rounds or miss something important, but go for that walk, get that cup of tea, get some sunshine. Advocate and speak up for your baby – be their voice. Document your journey and bring books to read to your baby. Having a book to read out loud helped us feel calm, and distracted while at the same time letting her hear our voice. Let friends and family help when offered, and ask for help. My co-workers arranged a meal calendar, and it was amazing to come home to a hot, homecooked meal after a long day at the hospital.
Maelee is such a joy. She’s OUR joy. Strangers often comment on what a beautiful and happy baby she is. They are often taken aback when we mention that she’s already had one heart surgery and is our warrior. We are officially on the waiting list for her second heart surgery. We feel like her next surgery will be even more difficult for us, as she’s a little person now with such a huge personality. We’re trying to just focus on one day at a time, one step at a time, and making lots of memories along the way.
Heather Lemieux – Maelee's mom
