Scarlett (2013)

Update: April 2014

All is going very well with our little Scarlett. She is 9.5 months now and will turn 1 on May 30th. Her cardiologist is very pleased at her progress and believes, at this point, she will not need any further heart surgeries but plans on keeping a close eye on her over the next few years. It's hard to tell how this will affect her until we see her a little more active. So we will be continuing the checkup echos and EKGs for awhile.

She seems perfectly normal and is on track with all her motor skills and development. She took her first steps at 8.5 months and has not sat still since. Most importantly her growth has improved. She was very underweight but has now caught up. This girl enjoys her food that's for sure!

Thank you for thinking about Scarlett and we are truly blessed to have been accepted in the family! We will see you all soon,

- Jason and Amber Kirby

Scarlett's Story...

On May 30th, 2013 our little Scarlett Ryan made her appearance. At almost two weeks early, she was a petite baby at 6 lbs 9 ounces and just shy of 20 inches long. Tall and skinny. All fingers, toes and strawberry blonde hair. Absolutely perfect in every way!

At home things seemed normal. She was sleeping a lot and eating every hour or so. At her 2 week checkup the pediatrician went thru his normal routine and asked a few routine questions. When he proceeded to listen to her heart, he paused and then continued to listen for what seemed like forever. Like any anxious parent would, we caught on to his subtle look of concern. He said he heard a loud murmur and that he would like us to see a cardiologist right away.

I didn't make it out of the office before I lost it. Chalk it up to still being very hormonal and not knowing what was wrong with Scarlett. My husband and I reassured each other that she was going to be okay and we were freaking out over what could be nothing at all.

We were referred to a cardiologist at Cook's Children's and made our first visit a few days later. It was a very long appointment full of diagnostics, chest X-ray, EKG and an echo. Then to then finally sit down and hear what the cardiologist had to say. He began to speak in length of what a murmur was and what causes them. In Scarlett's case, she indeed had something wrong with her heart. Her loud murmur was caused by holes in her heart, an ASD (atrial septal defect) which is a form of congenital heart defect that enables blood flow between two compartments of the heart called the left and right atria and a VSD (ventricular septal defect ) which is a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart.

Still trying to listen to the doctor, I started to tear up again. Nobody wants to hear these things regarding their newborn.

As the doctor so kindly was getting me a tissue, he began to discuss the symptoms she may begin to have and the treatment she should receive. "The only way to fix this is with open heart surgery", he explains. Now the flood gates were opened and I thought I was going to throw up. We were completely devastated. "Infant" and "open heart surgery" sounded awful in the same sentence.

We went home and it took awhile to process everything, and gather our composure enough to talk about it without sobbing. We also started doing research learning more about Scarlett's defects, the surgery and recovery.

We met with the heart surgeon and scheduled her surgery for October 15th. Our hope is that this will be her only surgery, have no need for heart medication and grow up to be healthy and active. We've learned that this is a common surgery and have heard success stories from many others.

Over the last few months, we have noticed Scarlett's symptoms getting more noticeable. The defects and their location have made it very difficult for her blood to flow in the right direction, which causes her heart to work overtime. Eating is a cardio workout for her. She'll break out in a sweat, rapid breathing and is very tired after she eats, sometimes falling asleep before she can finish. This has been a main concern, making sure she's eating enough. Even though she has gained weight, it's not even close to where she should be. She's such a happy little girl and smiles so much, it's hard to imagine there's something wrong.

Surgery is right around the corner and we're as prepared as we'll ever be. With the support and prayers from our family and friends, we have faith that all will go as planned and that our little girl will get through this!

Links

Read more about Scarlett on her CaringBridge site.