Welcome to our journey-
We found out an idea of a heart defect while I was 20 weeks pregnant, going in for my gender reveal. They said it looked as if she may have what’s called HLHS and recommended me to a specialist in anchorage, about a 6-7 hour drive away from our home town. I went to my first appointment in anchorage at about 23 week’s pregnant. From there, we ended up coming back to anchorage every week until I was about 33 weeks. That’s when they told us they thought that she might have fluid surrounding her heart and that we should go to Seattle childrens a little sooner then planned originally. We got to Seattle in mid-may 2022 and have been here since. She was born on June 14th looking completely normal. That’s the part I didn’t expect- how perfectly fine she looked. Since then, she has one major open heart surgery where they told us that she not only had HLHS, but also a very leaky valve. The dangerous part in all of this is that valve in one of her only working ones due to her HLHS. Her surgeon repaired the valve as much as he could, also performing the Norwood procedure. Since then, she has been pretty stable for the last couple of months with a few expected hiccups. Due to the condition of her valve, she is currently listed on the heart transplant list.
I give updates more often on my CaringBridge account- https://www.caringbridge.org/visit/roslynnsbigheart
Thank you so much to everyone trying their best to support us in these challenging times and for all the thoughts and prayers sent to our beautiful family