A year ago today, we made our way back to the Foothills Hospital to do an echocardiogram. It was a gruelling 3 hour ultrasound - gruelling again because I felt so faint lying down - and stressful because we were learning more about her body. That week of tests and meetings was easily one of the most mentally and emotionally draining weeks of my life. Grief is exhausting.
This was also the day when we found out the gender. During one of the breaks when we were left alone, we said to each other that we wanted to know so that we could love her/him more fully in the time we had left. I remember the moment when the techinician told us that the baby was most likely a girl. I felt struck by a deep tenderness for her - as well as a deep sadness because I had wanted a sister for Abigail and this wasn't the way I had pictured this. Dave and I were both crying. It was an emotional time.
Later, we sat down in a consultation room with the cardiologist - the same one we still have now. First she drew a picture of a healthy heart. Then she drew a picture of our baby girl's heart. I was so shocked. It looked nothing like a normal heart. I remember asking questions and trying to retain her answers, but her heart was so complicated and there was so much to learn - our minds were reeling.
She told us that surgery might be an option. She discussed the possibility of a heart transplant but because she had never seen a heart like our daughter's - she couldn't tell us what the options were yet. And later, we found out that there are no documented cases like hers in the world. Her arteries and veins were abnormal but they were not obstructed and there appeared to be decent blood flow and no leaks. She promised to get opinions from Edmonton - she would call us when she knew more.
After this very painful discussion, we met with a Doctor to discuss doing an amniocentesis. We decided to wait until after we had spoken with Genetics to make that decision.
After this, we stumbled out into the world once again and went home.
Kendra,
ReplyDeleteLove your birth announcement, Dave's letter to you and love it that Rachel has a totally unique heart -that nobody has ever seen before! Do you have some sort of picture of her heart that you could share with us? It might just be truly remarkable to enjoy seeing a heart of a one in 10 million baby - whose very heart has far exceeded and outlived and far surpassed any doctor's prognosis.
no problem if you don't..
love laura thiessen
ps. we were just learning about icefish in the Antarctica. Did you know that many species of fish in antarctic have developed an antifreeze chemical in their blood to help them survive in such cold waters? The antifreeze circulates around their bodies and stops ice crystals from forming. Without it, the fish would be frozen solid.
all this to say - I find God truly remarkable when we see how he is the maker of Rachel and fish such as these. totally unique!