When I was just 20 weeks pregnant, I got news most parents fear that my baby had some abnormalities and I would need to go see a specialist. The specialist noticed slight abnormalities with the baby’s heart and then referred us to a pediatric cardiologist. At this appointment is when we got the news that our unborn baby had a heart defect, later identified as a VSD and Tetralogy of Fallot and due to the size of the hole in her little heart she would require open-heart surgery at about the age of 6 months. I was monitored closely over the next several months and they decided to induce early as she was no longer growing. As a first-time parent, I was fearful but knew I would do everything in my power to make sure my baby was well taken care of. My sweet Isabelle was born on 11/15/18 at just 4lbs.
Over the course of the next 3 months of Isabelle’s life, she had numerous doctor appointments, and 3 hospital stays. She was admitted in January due to poor weight gain as her heart struggled to work causing feeding difficulties and had to get an NG feeding tube placed.
On the morning of 2/8/20, I awakened to Isabelle breathing heavily and at that point was told by our amazing cardiologist to get her straight to the hospital. Once arrived we were informed she was in early heart failure and just 2 days later was scheduled for open-heart surgery (3 months earlier than originally planned). The week of her surgery is the week every year that awareness is made of CHD and here we are actually living it at the moment. She did amazing in her surgery and they were actually able to repair not just the one hold but also another hole that we were unaware of. Nothing can ever prepare you for how they will look when they come out of surgery, but it will definitely make you are a stronger person. She spent the next 2 weeks in the CVICU at Phoenix’s Children Hospital. The doctors and nurses were absolutely amazing. There were a lot of ups and downs and sleepless nights during her recovery but after just 3 weeks we were sent home. Isabelle still struggles with weight gain and had to have a G-tube feeding tube surgically placed to help weight gain.
As many parents know with CHD babies, it’s always an uphill battle to get their baby healthy. I know we are moving in the right direction to where Isabelle will be able to live a healthy lifestyle. As a mom of a heart warrior, I try to make people aware of congenital heart defects on a daily as before I was pregnant I had no clue about any of it. So if I can shield light and awareness to one family I feel like that’s an accomplishment.
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