Our Story (TLDR version)On a Friday in November of 2017, I learned that I was pregnant. As soon as I peed on the stick and saw the lines, I experienced excitement and fear. Excitement because I have always wanted to be a mother, and fear because this was the fifth time I have seen those two lines- the previous four ended in early miscarriages. I called my husband and said, “I’m fucking pregnant.” And so the journey began.
We went to our appointments and were getting more excited and less scared with each uneventful appointment. At our 18 week ultrasound, we were hopeful we would find out the sex of the baby. It was a girl! We were so excited. They also told us there were some parts of the heart they couldn’t see and we would have to come back in a couple weeks when the heart is larger. We walked in with confidence looking forward to seeing our beautiful baby girl again. After the ultrasound, we were having our consultation and check-up with the doctor. She told us they still couldn’t see all of the heart, in particular, the baby was missing a ventricle, the part of the heart that pumps blood out of the heart to either the body or lungs. I remember my husband being his natural positive self saying that it would be okay, they would find it. I knew they wouldn’t. A week later, we went to the first of many level 2 ultrasound and echocardiogram. We learned on that day of Quinn’s official diagnosis. She had a double inlet left ventricle, coarctation of the aorta, and transposed great arteries. If that sounds like a bunch of confusing medical jargon, don’t worry. I will explain all of this later. I remember feeling defeated, angry, sad, and very afraid. The way that I deal with fear is to arm myself with knowledge. I began researching Quinn’s diagnosis by reading websites, medical studies, and blogs. All were helpful but I found the blogs the most comforting. I found comfort in blogs where the child was living a relatively normal and happy life. My biggest fear, other than losing my daughter, was her not having a good quality of life. Now as I sit in the Cardiac Intensive Care Unit (CICU) and watch my husband rock my daughter to sleep, I find myself frustrated with the lack of raw and honest information out there about what it would all really be like. I was not warned about how there were communal showers, about the lack of privacy, about how we couldn’t eat in the room, the intense fear I would feel for other’s children when I heard the horrific code alarm. I had no idea how much compassion and care I could have for another person that I haven’t even met. As a counselor with a lot of compassion, I surprised myself with finding even more. This was one of many things I have learned from this experience and from my amazing daughter. Right now, she is 4 and a half months and she has taught me, my husband, and many others so much about life and themselves. I wanted a way to express myself throughout this process and began with writing a blog. Every night that my husband and I were able to escape from the hospital to grab dinner, we would talk about how Quinn has changed us. I wanted to document these lessons for the future so that Quinn would know how much she means to me and to the world. This is for you Quinnie. If this story touches your heart and you would like to help, please consider donating to our GoFundMe. Thank you in advance for any support! |