Kylie, born 2004

In October 2003, my husband and I learned that we were pregnant with our second child. We were considered a high-risk pregnancy because of my gestational diabetes and at 18 weeks we learned our baby would be a little girl. This tickled both of our hearts because we already had a son. Our family would be complete.

 

Our daughter, Kylie, was born March 31, 2004. She had a head full of dark hair and blue eyes. She was 7 pounds 8.4 ounces and was 20 inches long. She was beautiful.

 

Three months after our daughter was born, we started to notice strange symptoms - swollen legs, bluish face and extremities, fussiness and trouble breathing. I suspected it might be related to a heart murmur doctors heard earlier but thought it was an innocent one. The heart murmur was not innocent.

 

Kylie was diagnosed in July with severe pulmonary stenosis and an ASD. On September 14th, she had a balloon valvuloplasty. She currently has minimal blockage and a hole in her heart. She will need to take antibiotics for any surgical and dental procedure and she will continue to see her team of pediatric cardiologists.

 

Kylie has been through numerous blood tests, x-rays, hospital stays, doctor and ER visits. She is developmentally delayed and receives therapy. She has been also diagnosed with Sensory Integration Dysfunction.

 

I have learned to tell myself all the time that babies are not all born healthy and whether they have 10 fingers and 10 toes is really not so important. It's all just part of parenting. If you aren't willing to accept having a child with a problem, you shouldn't have kids because the odds are there. Most people out there aren't taught this and until you have something hit you up close in the face, you just aren't aware that it doesn't always go the way you expect. We have learned and grown from our experience so far. When you are hit with something like this, it doesn't mean we aren't good parents. It just means that we are learning about something that no parent ever expects to have to learn about.

 

Story by Kylie's mom, Katie - Pennsylvania