Mia Katarina & Down syndrome

Our darling little Mia Katarina was born on November 5, 2012. She’s beautiful, sweet, cuddly, and we love her to pieces. Mia was also born with Down syndrome.

This was not a shock to Nate or me. When we went in for our 20-week ultrasound, the perinatologist found a soft marker for Down syndrome. We declined the amniocentesis for a number of reasons. We did ask for a level 2 ultrasound to examine her heart and other organs more closely at 24 weeks. She passed that exam with flying colors.

After Mia was born, they performed an echocardiogram. She was diagnosed with a VSD – ventricular septal defect – or a hole in her heart. It is very common among babies born with Ds. She also developed polycythemia – which means her body was creating too many red blood cells – and jaundice. She spent two days in the NICU drinking lots of fluids. She’s a tough little girl and was a great eater so she didn’t need to have an IV or other invasive procedures. Mia’s levels when down for both the red blood cells and the jaundice, and she was sent home – to two relieved and happy parents.

We will see the cardiologist on November 27th to check her VSD, and then I’m sure we’ll start the “wait and see” process. So far, her only other health issues are her hearing and low muscle tone. She failed her hearing test at the hospital, so we have an appointment with an audiologist. To combat her low tone, we have to be super diligent about tummy time and making sure she has lots of opportunities to use her muscles. We’ve also been assigned a physical therapist from the hospital to bridge the gap until “Birth to 3” services start. Given the list of possible things that could be wrong, we are extremely blessed that she’s doing so well.

There is amazing support for families and children with Down syndrome in the community, and we already have our assessment appointment set up with “Birth to 3.” As many of you know, we’ve been down the therapy road with Fynn so we sort of know what to expect.

Many have asked how Nate, Fynn and I are doing. Fynn, of course, is doing great. He loves his baby sister and is so happy to have her home. He refers to her as “baby sister” instead of her name which is ridiculously cute, and he loves taking pictures of her. He’s adjusting really well to having a new little one in the house and impresses us daily with how much he’s taken on the “big brother” role.

Nate and I are also doing well. We did a lot of praying over the last few months that little Mia would be born healthy – no matter what her chromosome count would be. I’ll admit that the last 20 weeks of the pregnancy were not so much fun – lots of worry, heartache and fear, but God gave us an opportunity to lean on Him and that is exactly what we did. And trust me, she’s far less scary now that she’s here. She’s just a sweet little baby doing what sweet little babies do.

If you have any questions, please feel free to ask. Thank you to everyone for your thoughts and prayers. Our friends and family have been amazing. Love to you all!

Erin, Nate, Fynn, and Mia