April 16, 2009
Waiting to Exhale
I still remember entering my first pediatric cardiology office. It was a hot May day (May 13, 2008). I was wearing a pretty black silk maternity top I purchased at the Gap, not really, it was at a yard sale, but it was pretty and it was from the Gap. I wore it because it made me feel good. I wanted to feel good. My husband and I nervously entered the office door, unsure of what to expect. Unsure of our baby's and family's future. On this day we would find out if something was really wrong and if so what or if it was all a big misunderstanding. I saw parents with babies, parents with children, parents with teenagers. I saw children walking out of the back office with a smile, new sticker in one hand and holding on to mom or dad with the other. I wondered if someday that would be me and my baby? I wondered why they were there? As I stood at the check in desk I could see rows and rows filled with patient files and I wondered how so many children could have something wrong with their hearts.
We were lead to a dark, fresh back room, that was playing a cartoon movie and had some mobiles hanging from the ceiling. I was told to lay down on my back and make myself comfortable. I tried, as comfortable as a five and half month pregnant woman could be. It was time for our fetal echochardiogram. I tried so hard to hold back the tears but as soon as I saw my baby on the screen the tears started flowing. How I loved that little baby! How my heart ached for that little baby! How I wished to know my baby would live! The tech took a bunch of pictures of my babies heart and then the pediatric cardiologist joined her to look at some of the images. It was an agonizing wait. I had waited two weeks for the appointment and now I just wanted to know already. They kept using words I did not understand and as time went on I knew. I just knew. My wish and hope that it was all a big mistake was not happening. My baby did have something wrong with it's heart. It was tragic. It was true.
After about an hour and half of laying down and cleaning my belly off from all that sticky gel, we met with the doctor. He explained our baby had something called Transposition of the Great Arteries. Doesn't it sound serious? Well it is. But he said that it could be corrected. Our baby would need open heart surgery shortly after birth! He used a lot of medical terminology we did not understand but he said by the time our baby was born we would. We left the office, feeling a little numb. Saddened that our baby had this diagnosis but also grateful their was something that could be done to help. The doc said our baby would/could lead a normal healthy life. And so, we focused on that.
That appointment was the first of many fetal echochardiogram's I had. At later visits, as our baby grew they were able to identify our baby also had something called a Ventricular Septal Defect and Pulmonary Stenosis. Unfortunately the Pulmonary Stenosis, ruined the chances our baby had of the one time switch and your on your way with the rest of your life surgery. I realize now, even that switch operation could lead to other complications but that most of the time it works fine one switch surgery and your done. Things got more complicated for us and the need for life long surgeries came into the picture. If you can imagine, we had just come to terms with the fact our baby would need one open heart surgery as a newborn, as terrible as that sounded it was still just one surgery. Now they were telling us open heart surgeries would become a routine part of our child's life. Routine?! How? And why? Could this really be happening? And it was.
All of our children were surprises. We wanted this baby to also be a surprise. On that first regular ultrasound, back in April, when we went to the OB office as family to meet our peanut for the first time, we told them we did not want to know the sex of our baby. But after everything that had transpired up to this point, I told my husband I needed to know. I needed to love my baby as person not know it just by this diagnosis. I already felt very bonded with my baby and I wanted to know who this special little person was. We were having a girl!!! One boy, one girl and now a new little sister. I was super excited. I love having my sisters although they are a bit younger than me. Okay a lot a bit younger than me. But still sisters share a special bond. And I was so happy to be having her. I was already head over feet in love!