Little Hearts

Kaitlyn, born 2011

August 25th, 2011 was the day that one of my dreams came true. After being the only girl surrounded by three brothers, and having two sons, I finally got my little girl! My family was complete! Kaitlyn Marie arrived weighing 6lbs 7oz and perfect in every way!  

 Our lives were changed forever 22 days later on September 16th. Kaitlyn was half-heartedly sucking at her bottles. She was an ashen color, relatively listless, and had gotten to where she was making a grunting noise. Her dad and I didn't like how she was acting so I called her pediatrician who wanted us to bring her right in.

We arrived at the pediatrician's office and she was seen immediately. You could feel the uneasiness the pediatrician had. She checked her O2 levels and rushed out of the room, returning a few minutes later with another pediatrician. She told me to pick Kaitlyn up and hold her, and then they both left the room. When she returned, she leaned over my shoulder and whispered that they were calling an ambulance to take us to Children's Hospital. Panic then set in and the rest of the day was a blur.

In the emergency room, they ran every test they could think of. The attending physician came to us and asked if they could do a spinal tap to rule out meningitis. They brought a pediatric cardiologist in who performed the echo on her little heart. I remember thinking that this was taking way too long. After what seemed like an eternity he came to us and explained what he had found and told us that she would have to be admitted. The walk behind her bed up to the PICU seemed to last forever. We were told to wait in the waiting area until they got her situated then we would be able to see her. In the meantime, the cardiologist came to us and told us in detail what he found. It was like I was in a fog. I have no idea what he was saying. I could see him, could see his mouth moving, but had no comprehension of what was coming out of his mouth, much less could understand what was in the drawing he had in his hands. This started the beginning of our 3 week stay in the hospital.

She was diagnosed with Shone's complex. We were told that she had a coarctation of the aorta, a bicuspid aortic valve, a hypoplastic ascending aorta, mitral valve stenosis, fenestrated atrial septum, a PDA, and multiple VSDs. Surgery was needed to correct the coarctation, but because she was suffering from a group B strep infection, surgery was postponed until she was fever free and had final round of antibiotics. Her coarctation repair and pulmonary band surgery was done September 29th at 5 weeks old. She came home a week later.

Since then, she has been referred to a geneticist. They have discovered that she has two chromosome abnormalities. The chromosome 3 deletion was passed on to her by my husband, but she also has a chromosome 13 isochromosome. They cannot say for sure whether or not this has caused her heart defect.  

Since then, she has been an active and healthy child. Although smaller in height and weight than most children her age, (she falls in the 5-10%) she's doing everything developmentally that she should be and her doctors couldn't be more pleased with how she's doing. My husband and I think that her smaller size may just be genes. My mother, my husband's Granny on his mom's side and his grandfather on his dadís side are all on the smaller side.  Kaitlyn will face at least one more surgery in the near future. Her cardiologist talked about her having her second surgery but decided that since she's been doing so well and the pulmonary band is still doing it's job, let her grow some more and we'll talk about surgery again in the spring.

As much as we'd like to ask "why", we've come to realize that were chosen to be Kaitlyn's parents for a reason! Through all this, we have learned that time is the most precious thing we are given. Every moment, every milestone, every smile, every kiss means more and more and every night we thank God for giving us such an awesome and amazing little girl!

 

Story by Kaitlynís mother, Jennifer Ė Alabama

 

 


4/17/2011
Mason, born 2010
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4/24/2017
Declan, born 1999
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Little Hearts, Inc.

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