Kailey’s amazing journey
If you’ve followed Kailey, you’ll notice that her site has grown, as has Kailey. Gone is the sweet baby theme, because my sweet miracle baby is now a sassy 9 year old.
If you are new here, this is Kailey’s website, out there to share her story. Despite your belief system, there is no denying that this child is a miracle. However, before you read further, I implore you to go into this with the understanding that Kailey, while medically fragile, is an active bright and fairly typical child.
Kailey’s story begins in November 2002, when at a level II ultrasound we found out that our precious little baby had a number of birth defects. In the days and weeks that followed we heard more and more bad news, as doctor after doctor painted horrific images of what our daughter’s life would be like IF she were to survive. We had many medical opinions that it would be far more humane to terminate than to bring a child like this into the world. Some told us we would go bankrupt because of her care. Others said we would ruin the life of our son, who at the time was only 9 months old. We had decisions to make, and just when we were unsure which way to go, Kailey let her opinion be known and kicked her daddy in the head as he lay on my belly.
We found a wonderful team of doctors who were supportive of our choice to carry to term, despite the extent of the baby’s diagnosis. From there we were surrounded by optimistic, yet realistic opinions. We learned that Kailey had spina bifida (myelomenigocele), a cleft lip and palate, and multiple heart defects. Her feet were clubbed and suspected to be “rocker bottom” feet. Her brain had enlarged ventricles. Doctors suspected trisomy 13 or 18, but an amnio ruled those out, along with De George syndrome.
As the time to deliver came closer and closer, the sonograms continued to show that Kailey was extremely small. We expected her to be born under 4lbs.
On February 13, 2003 Kailey Rose was born weighing in at 6lbs 10 oz!!!! She was a short 17″ tall, and she looked like a little fat turkey! She was red and crying when we expected her to be blue and silent. She was squirming, when we expected her to be still. When the doctor held her up for me to see, my heart FILLED with pride! Look at what my baby did! Look at the odds she overcame and she was merely seconds old!
Kailey was not expected to live through the night, but she did. Her heart was in very poor condition and because of that her exposed spine could not be closed. We were told that if her heart didn’t give out, she would eventually get meningitis and that would be what would kill her. We took a deep breath and asked to hold our baby. We held her that night and said our hellos and good byes. We had her baptized before we laid her down for the night. She was hooked up to so many tubes and wires that holding her for long periods was just not a possibility. We left her that night expecting it to be the last time we saw her.
Somehow, some way Kailey’s heart stabilized overnight. Just long enough for the surgeons to close her spine! February 14, 2003 was the beginning of a whole new world of hope! Kailey spent the following 79 days in the NICU. Kailey’s heart was not a hypoplastic left heart, but instead it had a double outlet right ventricle and a deformed mitral valve. Kailey had multiple surgeries to stabilize her heart, the final one being a mitral valve replacement. She had a shunt placed in her brain to drain fluid that may accumulate in the enlarged ventricles. She had small pieces of skin that connected her lower eyelid to her upper eyelid removed. In those 79 days we watched as this baby went on a medical roller coaster. Stable one moment, comatose the next. But in the end, she came home before we ever dreamed.
Kailey has had her cleft lip and palate repaired, her mitral valve replaced a second time, her clubbed feet operated on and casted. She has had numerous surgeries over the years, but she has always come through them like a champ! Kailey’s heart has done some crazy and scary things, but again, she has always come through.
Today Kailey is nine years old. She is in 3rd grade and she is a very typical little girl. Kailey uses a wheelchair to get around because she doesn’t have feeling below her knees. Kailey is outside playing with her siblings and the children in our neighborhood just about every day. She is incredibly active, despite her health.
Kailey prides herself on how much she is like everybody else. We, as her parents, pride ourselves on how strong and resilient she continues to be. Year after year Kailey shines, captures attention, and continues to prove that books & statistics can’t always predict what tomorrow will hold.
Please remember Kailey in your thoughts and prayers. She has come a long long way, but we do not know what tomorrow holds. Please share her story, and let it be known that miracles do exist. Let it also be known that doctors, at the end of the day, are just people. Their opinions are not law. Follow your heart, and you will never regret the choices you make.
Thank you for visiting Kaileyrose.com.