Disclaimer: The following content is sad, so if please skip if you are having a rough day
It is a fact of life that babies and kids with CHD's do face a higher mortality rate than the average child. Children with HLHS have even worse odds given the severity of the defect. In a few more days it will be the first birthday of our heart friend Kaia. Kaia was born with HLHS and passed a few weeks after her Norwood operation. I have been in touch with Kaia's mom ever since we got Olivia's diagnosis and she has been inspirational to me. Stephanie has chosen to honor Kaia's life by creating pieces of fabric art and other projects under the business Little Lion Designs http://www.littleliondesigns.com/ - which was their nickname for Kaia. We have a piece by Stephanie titled Olivia's Garden that hangs in her nursery today and it is beyond beautiful. It obviously carries special meaning for us given the story behind its creation. Even though the loss of their daughter is a daily struggle, they have found ways to cope and move forward while keeping the memory of their daughter with them. That fact gave me hope that knowing these heart parents can move on and continue spread awareness of CHD's to others while also finding fulfillment in daily life made me feel a sense of peace prior to Olivia's arrival. I think of Kaia daily when I'm Olivia's room looking at that artwork and smile that she's watching over Olivia now.
Sadly, another family lost their little girl Maia yesterday to complications from HLHS. Maia was ten months old and had completed both the Norwood and Glenn procedures. I looked through much of their familys blog this morning and what hit me the hardest was looking through pictures of Maia throughout her life. If I had not known her diagnosis and excluded any picture in the hospital, she looked like a completely healthy baby much like Olivia. She had big beautiful brown eyes and a full head of silky dark hair, again reminding me of Olivia.
It is easier for me to comprehend letting go of a little one when you know they have been suffering or there is nothing more that can be done to give them a good quality of life. But when these babies look like they are on the road to recovery only to be gone shortly thereafter, it is harder to understand or accept. I know it is the reason that Brian and I have adopted the cautiously optimistic attitude that we have had thus far on our journey, but even I am getting spoiled by having so many good days in a row. Sometimes I forget or deny that soon we will be back in the hospital and handing over Olivia once again for another surgery. Today was just a splash of cold water bringing me back down to reality. Tomorrow we have another appointment at Hope, I will make sure to post an update when I have access to a computer.
Good night and sweet dreams to all the little angels out there