Ember

Ember, a Mosaic Trisomy 18 & Heart Warrior

My daughter is named Ember. She has Mosaic Trisomy 18, and she is 6 years old. We didn't know about her diagnosis prior to her birth. We did know that she had heart issues and wasn't growing well. She was born at 37 weeks and 5 days via a planned c-section. She was 16 1/2" long and 4 lbs. She spent 21 days in the NICU. They told us she had a 10% chance of getting to her first birthday and not to be surprised if we woke up and she had passed away. They said we would be lucky if we got weeks or months. They also told us she wouldn't be able to do anything and she wouldn't know us. I remember them asking me what's one thing that I hoped she would be able to do, and I said, "Smile." I think they were surprised by my answer. We decided then and there to go Day by Day "on Ember time." She has done so many things they thought she would never do, from swimming and riding her pony to indoor skydiving for her 6th birthday! Her smile lights up the room, and she definitely lets you know what she likes and doesn't like. The sky's the limit for our Heart Warrior Princess!!!!!!

The hospital where she was born didn't want to do her heart surgery, so we traveled to Omaha, Nebraska. Ember had a large VSD up in the membrane, an ASD, and a PDA. She had heart surgery when she was 3 months old and under 7 lbs.

She has a g-button, glasses, hearing aids, AFOs, and a CPAP. She likes to go sideways and backward in her gait trainer. Our girl likes to GO!

Ember has taught us to be better people and brought us a closer relationship with God. We are so thankful for our girl and her baby brother. 🥰