When my daughter was born, we had no idea she would have down syndrome. We had the NIPT done and it came back normal and no markers on her ultrasounds except for the fact that she was measuring a little behind. This didn't alarm us due to the fact that I had a marginal cord insertion and this could cause reduced blood flow. I had growth scans every week and while she always measured behind she grew at her own set pace. She never fell further behind, right on track compared to her other scans. The day came for us to be induced (due to gestational hypertension) and everything was going great!

..... until it wasn't. Baby girl's heart rate started to drop. They tried rotating me on my sides, placing an internal monitor and performed a bedside ultrasound to verify her heart rate was indeed dropping. Her heart rate was normally in the 130-140s and it went down to 90, then 80 all the way down to 50s-60s. My doctor rushed me into an emergency c section and my daughter was born at 10:51am on January 6th. I didn't get to see her right away. She wasn't crying. They had to clear the fluid from her lungs and there it was.. her first beautiful cry that I was longing to hear after such an eventful morning. I remember asking if she was okay, and everyone told me she was perfect. The nurse practitioner asked if she could take her to the nursery and take a look at her. I gave my daughter a kiss on her cheek and they swept her away. That's when everything changed.

The Nurse practitioner came in and asked if she could speak with us. " Your daughter has some concerning facial features." Deep down, I knew what she meant but I needed to hear it. I asked her what she thought was wrong and she said

"Down Syndrome." (Later other doctors mention a 22 deletion or even Turners syndrome. Everyone was just so baffled by our case. Things weren't adding up. No one could tell me what was wrong with my baby.) They decided to send her out to a local hospital that had a higher level nursery with a NICU. My daughter needed oxygen those first few hours and her blood sugars were low. I still hadn't held my daughter. It would be another 3 days before I held her the first time. Turns out, she does have Down syndrome and that wasn't all that was missed. We found out she had an AV Canal Defect associated with DS and a PDA defect in her heart. TWO heart defects. Down syndrome wasn't phasing me, I'd love my daughter either way. But open heart surgery on my tiny girl? I was shattered. Wondering what I could have done to cause this. 30 days later and she is doing phenomenal managed by medication so that we can push her heart surgery out until shes bigger and finally past her birth weight. She was born at 6lbs 12 oz and she is now 6 lbs 14oz. She has a great suck, swallow, breathe coordination however due to both of her heart defects she tires out quickly so they placed a G-tube last week. She takes what she can orally and the rest goes through her tube. We finally have our girl home and she finally got to meet her big brother. Our hearts are so full 💗🎀