My pregnancy had been perfect with no problems at all. I lost weight rather than gaining, and I worked right up until my water broke at work – 2 days before my due date.
We gave birth to our beautiful baby girl on May 19th, 2016. She was everything we could have hoped for and more. Claira was jaundiced so we were in and out of the hospital recieving bili light treatment. I think we had been home for about 2 full days all together when we headed to her 1 week checkup.
We thought that besides the jaundice everything was fine; we had a perfect little girl. Little did we know that day was going to be longer than we expected. Our family doctor had noticed a very odd/loud murmur and sent us right away to see a specialist pediatrician, Dr. Johkan at the Yorkton hospital. After what felt like the longest wait of our lives, we had gotten in to see him and after having listened to Claira’s heart for about 5 seconds he rushed my daughter and myself by plane to Saskatoon, with my husband following by car at 2 am.
We spent 2 weeks at RUH where she struggled to gain weight. Shewent from 7lbs to just under 6lbs while I struggled to keep my milk supply up. With the stress of it all I just couldn’t give her what she needed so we would top off with formula. Claira was put on a high calorie diet, in the hopes that she would gain weight. Then, after many tests, one doctor who said there was something wrong with her heart, and another who said they thought she had brain damage (based on the fact that her eyes were too far apart) we finally got some news. After a lot of testing, we got the all clear that there was nothing wrong with her brain! Great news!
We were also told she had a VSD but they were 80% confident the hole would close on its own.
By the time we were able to leave, she had finally gotten back to her birth weight, and we were told to stay on the high calorie diet, to keep in contact with a dietitian, and to have weekly weigh ins. After a couple months of very very slow weight gain our 3 month appointment came. At 3 months old we were told the hole was not getting any smaller, her kidney was starting to drop, and too much blood was flowing to one side of her heart – all of which explained her struggle to gain weight.
This is when we were put on the wait list for surgery. We got the call October 7th and then October 14th was Clairas surgery at the Stollery – it was the most difficult time in our lives.
Passing our newborn baby off to the nurse for surgery knowing what would happen next was the single most difficult thing I have ever had to do.
I broke down crying, but I was confident that she was in excellent hands. The staff and doctors at the Stollery went above and beyond for us and were so understanding and helpful. After a very long wait (I honestly cannot remember how long we waited) that felt like days, the surgeon met with us and told us that it was a successful surgery but that he had found another 2 holes in her heart during surgery. Thankfully he was able to seal them all, adding a patch to the problem hole and a few stitches to the others.
Our surgeon was Dr. Alaklabi; he was so nice and understanding and really took pride in his work. He put up with my crazy questions that I’m sure I repeated more then once and explained the process before and after everything. After 2 weeks in Edmonton we were finally able to go home as a new family.
Since then she has been growing like a weed and meeting all her milestones as if there was never a problem. At our last appointment with Dr. Pharis we were told the patch looked wonderful. The only problem is that she has developed a muscle bundle right beside the patch which has caused a slight murmur, but shouldn’t cause any issues. We will continue to follow up with Dr. Pharris to keep us all at ease.
Claira is 2 years old now and excited to meet her new brother or sister in October. Nothing holds this girl back. I still worry every day but I am so happy that moment in our life is gone and over. Thank you for reading. All you heart mommas and daddies are rockstars. I know it may be really hard to go through right now but there is a light and you will get through this.