Kylie's Story, by her mama

Post by Melissa.

In march of 2011, we learned we were expecting our second child. We were so happy. Our oldest would be starting kindergarten that spring and the timing is what we had always planned.
In the begging, everything was going great.

At my 18 week checkup we learned that our new little bean would be a girl!!

A few days later, everything got really scary.

My doctor called and informed me she thought that our baby only had 2 vessels in her heart and wanted us to see a specialist to get a better look at what was going on. A few days later during our appointment, the specialist start the US and stopped rather quickly. She informed us that Kylie did have 4 vessels, however there were other causes for concern. She noticed the cleft lip, a bright spot in the bowels and a bright spot in the lungs and i only had a two vessel umbilical cord not three. All, she said, were signs if a genetic disorder. An amino was suggested and we agreed. The results came back as a genetic disorder of trisomy 13. This means she has an extra 13th chromosome. Along with this diagnosis comes failure to thrive and no life expectancy. We were crushed.

An abortion was HIGHLY recommended since this baby "will never live". In my heart of hearts I knew that this journey would be hard but I couldn't let my baby go. The way I look at it is, God put her in my belly, He will have to take her. I wasn't giving up!!

We had constant doctor appointments and around Christmas, it was suggested that we contact a hospice group on the off chance we could take our baby home. We gladly took the advice and met with a hospice group before Kylie was born. And on the day of delivery, we signed on with them in the hospital. (we were discharged from hospice in march of 2013!!)

On January 12,2012, tat 39 weeks and 1 day, it was time to meet our little princess. The delivery went smoothly and Kylie was born, ALIVE!!! The minutes turned to hours, to days to weeks to months!! This baby the told us would not live......was!! And thriving!!!

We spent a lot of time in and out of the hospital during the 1st year. A total of 6 months I believe. The hardest time was when Kylie got aspiration phnonia in June 2012. She had to be put on a vent to breath for her. After 3 weeks the time had come and we made the choice to take her off the machine. We prepared for our final goodbyes.

After 6 long hours, Kylie opened her eyes!! She was still with us!! We stayed at the hospital an additional 3 weeks and then.....another discharge. We were headed home!! Shortly after we got private duty nursing in our home. They have truly been a God-send.

In January, we celebrated Kylie's 1st birthday!!! We couldn't believe it!! What a major milestone.

In April 2013, Kylie went in for cleft repair. She is healing beautifully and is scheduled for pallet repair in August this year. On June 26, 2013, we celebrated 1 year since extubating!!! This is now known as Kylie's Re-Birthday!

Kylie has a very loving big brother who just adores her. Although we have had A LOT of ups and downs, I wouldn't trade it for anything. I can't even think of how my life would be had I listened to the doctors about aborting. She brings a smile to my face everyday!!