This is Maya! She is a funny, smart, adorable and strong 18 month old. If you met her today, you would notice her beautiful eyes and her infectious, toothless smile. You would never guess she had to fight for her life multiple times during the first 12 weeks of her life. We found out at our 20 week ultrasound that she had a congenital heart defect called an AV Canal Defect, which meant (in non-medical terms) she had three chambers in her heart instead of four, a defect which only could be fixed by open heart surgery within the first 6 months of life.
This is a common CHD (congenital heart defect) in little ones who have Trisomy 21 aka Down Syndrome. We were told that the surgery typically happens between 4-6 months after birth and usually doesn’t need to ever have a repair again… so once it’s fixed-it’s fixed! Most hospital stays for this surgery are around 10-14 days. In my hours of scouring the internet I found positive news that a lot of babies who have T21 do extremely well, and some go home after just six days! All of these things are typical, but our sweet Maya girl did not follow the typical timeline…she had a different path!
Heart Failure
Maya started going into heart failure when she was just 5 weeks old. By 6 weeks she was maxing out on her medications, and she was so tired that she could barely eat. We took her in to the Children’s Hospital of Wisconsin where they put an NG tube in her nose that went into her belly so we could nourish her that way. We decided it was time to do the surgery sooner than later so the day before Thanksgiving 2018, she had an almost 8 hour-long open-heart surgery. Nothing can prepare you for seeing your sweet newborn after a surgery like that.
It was an exhausting day, and she was so heavily sedated for pain management that my husband, Ryan, and I went to the Ronald McDonald House to sleep for a few hours. At 2:00 AM I randomly woke up. Sixty seconds later, Ryan’s phone rang, “You need to get back to the hospital. Maya needs to have an emergency surgery to fix a tear in her mitral valve. The team is on their way back in.” On Thanksgiving morning countless people were woken up at 2:00 AM, got ready, and left their families to rush back to the operating room to try and save Maya’s life…again.
Fast forward a few days and things are looking up! We are hoping to head home in a few days since we had been there for 15 days already! But then, the cardiologist heard a murmur, then the next day she heard a gallop. And on day 18, Maya was going in for her third open heart surgery. She wasn’t even three months old yet.
Third Times a Charm
Day 37: We are going home!
Thankfully the saying was true, third time was the charm! We got to go home a few days before Christmas, 37 days after we first went in. Of course there were plenty of bumps in the road but I can honestly say, she is worth every tear, every appointment, every worry, every heart breaking moment because now I cry happy tears at how far she has
come and how much joy she brings us and anyone else who meets her.
This is Maya. The strongest person I know. Please follow us on Facebook and Instagram for more.
