Monday, July 1, 2013

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!!


Meagan Bryant said...

Your daughter is beautiful and your story is amazing!! I'm currently nearly 34 weeks pregnant with our second son Broderick. He's got T13 as well as hypoplastic left heart syndrome. Cleft lip too. We're very afraid that the heart condition is going to be what shortens his life even more, a pediatrician said once the holes close that normally do at birth, we have a week maximum. But we'll take that week or less and run with it. We were told how much in the minority we are as well to keep going with the pregnancy instead of termination but like you...God put him in there, and if he wants to keep living...we're not taking that away from him! Kudos to you for listening to your heart and I hope you have YEARS more with your amazing child!

Unknown said...

Your story is amazing! I am so glad you listened to your heart and not the doctor's advice of termination. You have a wonderful daughter! Congratulations!

Anonymous said...

My Niece is Meagan Bryant. While we wait for Brody to be born, it's been hard for all of us, but mostly for his Mom and Dad. We're hoping for a miracle and your daughter sure is one. She gives us hope in our darkest hours. Thank you for this. God bless you and your little family. Margaret Miller

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