On March 17th, my husband Ryan and I showed up to our 20-week prenatal appointment hoping to confirm we were having a baby girl. Instead, we came out with news that our daughter had something wrong with her heart. It was a rare congenital heart defect confirmed the next morning by a pediatric cardiologist. For the next 20 weeks, many tests and doctor’s appointments followed as we would be closely monitored. The ultrasound confirmed her diagnosis: a double outlet right ventricle (DORV) VSD, ventricular septal defect (holes in the heart), and pulmonary stenosis. The doctors said she would need open heart surgery, but it was just a matter of when.
August 3rd 2016, Mila Rose was finally born. The Neonatal Intensive Care Unit team was ready and waiting for her. My husband and I got to hold her for only a couple of minutes before she was whisked away to begin her tests. After five days in intensive care, we got the news we could take her home to get her strong for her impending surgery.
She was home for almost two months and doing well, but on the morning of September 28th, I noticed the soft spot on her head was very deeply sunken in and I took her to the pediatrician. By the time I arrived, her mouth and eyes were blue, and her lips were very blue. Her oxygen level wouldn’t go above 65 and we were sent to the emergency room. She was admitted to the prenatal Intensive Care Unit as her oxygen levels dipped into the thirties and her heart rate was very high.
She was diagnosed with a simple common cold that made her fragile heart work overtime. We were there three days while she recovered and gain strength. On October 5th, I noticed another sunken soft spot and my husband and I brought her to the doctor and then were sent back to the ER. It was the scariest event yet. Her oxygen levels dipped into the twenties and they needed to intubate her with a breathing tube and put her in a coma so her heart would stop working so hard.
She had an emergency heart surgery to have a shunt placed. We were so heartbroken that she couldn’t have her full heart repair. But in her fragile condition, she was telling us she needed other help at the moment. The next few months were focused on keeping her from getting sick. She had only met a handful of her family members at this point to keep germ exposure to a minimum. We lived in our home like a bubble but it was necessary.
On January 6th, she got her full heart repair surgery. That was the longest day of our lives. It was all day surgery and she was swollen and came up from the operating room with her chest still open. There were several challenges with her recovery including a tough time coming out of a coma and developing a condition that put her on special prescription formula but she fought through it all. After 15 exhausting days, we were on our way home again but this time our baby girl had a “new” heart. At first, we couldn’t believe this was happening to us. Why did they have to find something? Now we are so grateful for the technology and research that allowed the early detection. We’re so grateful for the doctors who continually focused in on her diagnosis and were always ready for her. She will be closely monitored for her cardiology team for the rest of her life, but her future is bright and our hearts are full.