Ashlyn, born 2011

Ashlyn was born on Friday August 5, 2011 at 3:40pm. No health issues were detected during my nine months of pregnancy. When she was born, she was not breathing and the NICU nurses had to rush in to resuscitate her. Finally I heard her cry and the nurses rushed her to have a chest X-ray. I got to see her and kiss her quickly before she was rushed out for the X-ray. Twenty minutes later the cardiologist came into my room and informed me that they would have to rush her to Children's Hospital. I couldn't get discharged that night to go be with her.

 

Ashlyn is diagnosed with Ebstein's Anomaly and Patent Duct Arteriosis. The first few days, we couldn't feed her due to her PDA. We were waiting for her PDA to naturally close. On the 3rd day of her life, I was able to feed her 1 ml. She was so hungry. After four days, slowly tubes were being removed from her. Ashlyn's oxygen level had remained constant at 99% for a couple days, on the 5th day her oxygen tubes were removed. She was in the hospital for 9 days.

 

Prior to discharge she started to have jaundice; the level did decrease prior to our discharge. Once home, Ashlyn's jaundice increased again. She had the belly blanket for four weeks and then placed on medication to help get rid of jaundice direct and indirect. It took 1 1/2 months for Ashlyn to recover from jaundice direct and indirect. Ashlyn also has ptosis on her right eye so we are patching her left eye for an hour day so that she will stimulate her right eye more. Ashlyn has been thriving since then.

 

We live on a day to day basis, not knowing whether she will need surgery or not. That's the most crushing part of her complication. Not only that, we were told there isn’t as much research out there in regards to Ebstein's Anomaly as it’s a rare heart defect. I'm at lost. I only have Faith God. Ashlyn is an amazing girl with lots of smiles and love. She is such a happy baby.

 

Story by Ashlyn’s mom, Gao - Minneapolis