March 26, 2021 is when my life changed forever in the most scary and frightening way. It started off as a regular day; I had finished up at our 24 week follow-up ultrasound that morning and we were on our way to purchase and stroller and carseat when we got the call. My partner immediately pulled over as I was talking on the phone with my ob/gyn. She had told us we needed to head to the Maternal Fetal unit at JPCH as soon as possible because they weren’t sure our daughters heart had the proper structures and the rate had decreased significantly in just 4 weeks. Before we knew it I was a patient in the maternal fetal unit. The Doctors weren’t sure what was wrong or why I was there, but after a long four hour ultrasound they finally had a strong idea of what was wrong with our daughters heart. The doctors had told me I have lupus which is an autoimmune disease and the antibodies it creates attacked my daughters heart cells, which manifested into a complete 3rd degree heart block. Our daughter would inevitably need a pacemaker in order to survive outside the womb.
After the news broke of our daughters complete heart block I was immediately put on sick leave from working as a Registered Nurse. I saw my life flash before my eyes: I soon realized my life would consist of frequent trips to the hospital and soon staying by our daughters side in the NICU-if she made it that far… Dr Martel (who had now become my primary ob/gyn as my pregnancy became high-risk) had scheduled us to have weekly ultrasounds and echocardiograms. I was immediately put on steroids and medication for the lupus. The goal at this point was to closely monitor our daughters heart rate, watch for swelling around her heart, and to prevent the dreaded hydrops. Our daughters HR was in the high 50’s and low 60’s, she had minor swelling around her heart. We hoped and prayed her HR would not decrease further and that the swelling would not advance to surrounding organs. The goal at this point was to make it to 38 weeks and deliver our daughter in Edmonton around her due date via caesarean.
The medication I had to take was the bane of my existence, but also my saving grace as it kept my
daughter alive in my womb. I had gained 20 pounds in less than two months, I developed gestational diabetes in the 3rd trimester that needed to be treated with oral medication and insulin - I soon had to grow out of my fear of receiving needles as I was having to inject myself with insulin before every meal and checking my blood sugar multiple times a day. Because I developed GD, my pregnancy was considered even more high risk thus resulting in being followed by more doctors and specialists.
In my 35th week of pregnancy, there was growing concern about the condition of her heart. One side of her heart was becoming enlarged. Our Saskatoon team consulted with our team in Edmonton and the very next day we were on our way to Edmonton as we already had appointments to be at over there. We packed so quickly, but it was difficult because we weren’t sure how long we’d be in Edmonton for, and if we were going to bring a baby back home with us or not. It was a very bitter sweet moment; but we knew our lives would be changed forever when we came back home regardless of the outcome. The first day in Edmonton was spent at the hospital, waiting for our appointments and then waiting for the results.
After exactly a week being in Edmonton, they had decided it was time to bring our daughter into the world. On June 18th, 2021 we welcomed out beautiful daughter Rose-Rae into this world. She was born premature, at 36 weeks. When she was born, I only got to see her for a quick few seconds as they whisked her away quickly into the stabilization room next door. They were stabilizing her for over an hour. When it was time to transfer our daughter to the Stollery Children’s hospital, I got to hold her for no less than 5 minutes. Being all alone at the women’s hospital in Edmonton while my partner was with our daughter had to be one of the hardest times of my life. I longed to hold my baby girl in my arms, to smell her, kiss her, cuddle her. Do all the things a new mom would be doing. I only got to watch her for maybe 20 minutes on an iPad and talked with the nurse taking care of her. I felt so helpless. I myself just had major surgery and became a mother for the very first time. Nothing about my pregnancy and birth experiences were normal, and I continue to grieve the loss and experiences I never got to have.
The very next day I was miraculously discharged and was finally able to be with my daughter. She was hooked up to monitors 24/7 which made taking care of her very different. At only 5 days old it was time for her to have surgery on her heart. The pacemaker surgery was a success and everything went smoothly that day. The next day she spiked a fever, so they ran a whole bunch of tests on her and put her on heavy IV antibiotics. This setback prolonged her hospital stay in Edmonton; she was ventilated longer than expected, and soon had to be fed through an NG tube. We could not hold her for two whole days. They later came to the conclusion she had a bladder infection and her heart surgery was not the cause for infection. What a sigh of relief!
After two weeks of being in the NICU at the Stollery, we were transferred to the Jim Pattison Children’s
Hospital, we were going home! To us this was a very huge step. The day before we got the news we were scrambling to get everything else we needed to bring her home; as I mentioned before we weren’t sure if we’d be bringing a baby home or not so we held off on buying almost everything for her. The worst would be coming home to all this baby stuff and no baby… Alas, we were back home in Saskatoon with our daughter in the NICU here. After a week being at JPCH NICU all of Rosa-Rae’s specialists signed off on her and she was discharged. We were finally bringing our baby home!
Today Rosa-Rae is healthy and thriving! All her specialists say she is doing amazing and that we are doing such a good job. She is slightly behind on some milestones, but if we corrected her age she’s really actually on track! <3 my journey to motherhood was not the easiest. But being Rosa-Rae’s mother makes up for all the tears and heartache. We are so beyond grateful for all the support we received from family and friends. I am truly blessed to be this girls mother and I’m excited to journey this life with her <3