This is just the beginning of Alexandria Elise's story. Lexie is my niece and the daughter of two strong and amazing parents. Lexie was born early January and had to spend nearly a month at Children's Hospital in Birmingham, Alabama. Lexie is a special and very loved little girl who was born with a rare disease. One in which only 40 children in the entire world have been diagnosed with. The following is their story straight from mom and dad....
On August 17, 2014 we announced to our families that we would be expecting our first child at the end of January 2015. Since we waited so long to become parents, they were all in shock! About a month later, we threw a gender revealing party to inform everyone that we were having a baby GIRL! After much thought, we decided on the name Alexandria “Lexie” Elise Griffin. At our next routine check-up at the OB in Montgomery, AL, we were told that Lexie had some heart issues. After that, we had to visit the University of Alabama in Birmingham quite frequently to have cardiology specialists monitor her heart. Lexie was born on January 6, 2015, 3 weeks early due to slow movement on a routine ultrasound test. She was born via C-section to prevent any stress to her little heart. When she came out she was crying and it was the most beautiful sound we have ever heard. Only a few seconds later, dad got to go back and watch the doctor’s work. They returned briefly to give mom a peak and then they were off with Lexie to the NICU. She was the most beautiful thing that we had ever seen!
In the next few days we learned that Lexie was born with LongQT and a 2:1 heart block. She was also born with webbing of her hands and toes. On January 12, at 6 days old, we were transferred to the Children’s Hospital of Alabama where she had open heart surgery to install a pacemaker into her abdomen to correct the 2:1 heartbeat. I think it was the scariest day of both of our lives. About 24 hours later, they had her off of the ventilator and she started the recovery process. The staffs at UAB and Children’s Hospital were the greatest. They treated Lexie like she was their own and they were there to help us in every way. We had a few scares from time to time in our 26 day stay at Children’s, but we were finally released to come home and start having a normal life with our beautiful angel!
Since we arrived home, genetics testing came back and confirmed that Lexie was born with an ultra-rare genetic heart condition called Timothy Syndrome or LongQT8, Type 1. She is one of approximately 40 children in the world with this disorder. Timothy Syndrome is a disease in which the calcium ion channels, which regulate calcium intake at the cellular level, do not close properly. This allows too much calcium to enter the affected cells. While many systems in the body are affected by the excess calcium; the pancreas, heart, brain, and dental development are the most widely affected. Lexie will have to undergo a few more surgeries; one to implant an ICD (Implantable Cadioverter-Difibrillator), which will protect her against dangerous heart rhythms and surgeries to correct her fingers and toes. For now, we just treat Lexie like any other healthy baby and give her all of the love that we can! She has a huge family and many friends that love her to pieces and we trust God has her in his hands!
-Tori and Jeremiah
I am so glad I was able to be there not only as an Aunt and Sister-in-Law but also to document this time for Lexie and her family. I know looking back on these images will bring back a range of emotions, and I know they will be cherished forever. Years from now, they can sit down with Lexie and show her the pictures of the day she was born and what she's overcome at such an incredibly young age. Lexie has so many people who love her and I know she is an inspiration to many.
Here are some pictures from Lexie's birthday as well as a little of her stay at Children's Hospital. I've also included a video with even more pictures at the very bottom including some cell phone pictures I compiled from family members (be sure to click on HD for best quality). Being a mom of 2, I couldn't be at the hospital as much as I would have liked (especially with them being sick at the time), so I'm glad I could get these photos together for them to help round out the story of the first month of Lexie's life.
*Disclaimer: the photos from the operating room were taken by Lexie's daddy and edited by me.