In December 2011, while on Natalie’s Wish Trip, we had the awesome pleasure of meeting (in person!) a really amazing family in Orlando. I had connected with Tiffany, Kylie’s mom, about 2-3 years prior online and it’s one of those connections that will last a lifetime. Because this family is so similar to my own. Still unique and different, but there was something majorly similar in both of our families lives- CHD and more specifically, a diagnosis of Tricuspid Atresia with our two daughters. Kylie is one incredible warrior.
Here is Princess Kylie’s story as told by her mom, Tiffany:
“I was pregnant with my second child. Already having the boy I had dreamed of, this time I was hoping for a girl and at my routine 20 week ultrasound, my dreams came true! Being my second pregnancy I thought I was an old pro. The tech didn’t even have to tell me what the sex was, I already knew and was more excited than words can express. I’ve always heard moms telling their stories and saying “the ultrasound took longer than expected” or “they had a strange look on their face and kept going over and over again” but that didn’t seem to happen. I was sent home in the best mood. Calling family and friends and spreading the news that baby GIRL Kylie was on her way and well. Until I got an alarming call from my doctor’s office. I was told that something had been found during my ultrasound with Kylie but they wouldn’t say what. I rushed to my OBs office only to be told that her heart wasn’t quite right. I had no clue what this meant. I had a perfectly healthy child at home. How does this happen? Why me? Its got to be a mistake.
I was sent over for another ultrasound, this time at the hospital. Several doctors were there going over and over the pictures on the screen. That day, I learned that Kylie’s heart was missing its other half. This is all NEW news to us. I don’t think any parent can imagine it can happen to them until it actually happens!
I had so many ultrasounds, tests, blood drawn, everything imaginable and there was no real reason for why it happened. There was no family history and I had been to EVERY prenatal appointment. This was the first day of the rest of our lives being parents to a child with a CHD.
The one thing that sticks in my mind is that we were actually given the option to ‘terminate’ the pregnancy. AT 20 WEEKS ALONG!! Could you imagine?!? Of course, it was never an option we would even consider. So for 4 more long months we would wait to meet our daughter that “may not survive”.
I was routinely seen by a cardiologist and he kept us as up to date as possible. To this day, he has been pretty spot on with Kylie’s heart and we cannot thank him enough. We were told that she would probably get to go home with us within her first week of life. After a few ups and downs, she was! We brought her home at 7 days old. She got to learn to eat and grow. Something that’s very important for a CHDer: weight. Being that she was born at 37 weeks she was on the smaller side at 6lbs 2oz but that didn’t stop her.
At 20 days old we had to return to the hospital for what would be one of the scariest days as a parent, her first open heart surgery. Every heart surgery is different. Kylie’s first was something called the pulmonary artery band procedure. This would make the blood flow at a rate that her tiny heart could handle until it was time for her next staged operation. She came out well for such a young patient and heart-wise she did great.
A few days after her belly started to swell and she developed Necrotizing Enterocolitis or ‘NEC’. With the change in blood flow to her lower half, her intestines went into a short of shock mode. NEC can be severe and even fatal. Thankfully it was noticed at the onset of symptoms and treatment began. Kylie did not get to eat for almost 3 weeks. They had to give time for the medicines to work and to clear out this disease. As a heart mom, we already know what its like to not be able to feed your crying, hungry baby. It was horrible. Had she not caught the NEC she probably would have been home just a week or two after her first open heart surgery.
Besides her feeding problem with milk protein allergy which lead to more doctors visits, Kylie continued to grow and gain weight. She was a healthy, CHUNKY baby!!
At 6 months old we brought her back for her second OHS called the BiDirectional Glenn Shunt. This surgery ‘prepares’ her heart for her third surgery, that completes the process.
We brought Kylie home after just a week!!
Many doctors usually predict that kids will need their third operation after the age of 4. Kylie had her Fontan two months before she turned 3.
This time, it was more difficult because she was older and more aware of what was going on but in less than 2 weeks we bought her home yet again!
While most children do well after the 3 repairs there’s always a chance that they do not. Kylie was on this ‘do not’ list. During the Fontan a small hole or ‘fenestration’ is left open. This really just makes it a faster recovery and easier on the heart. Usually, oxygen saturations are at least in the low 90s. Her doctor said he would give her a year for her heart to adjust and her levels to come up. Kylie’s had not really gone up above 85. It was time for ANOTHER procedure. This time it would be much easier. They can close this hole through a heart catheterization. PHEW! I was so hesitant to put her through anything else and tried to push it off as long as we could. But we could notice that she was getting more blue, her activity decreased, her weight suffered, and her numbers were dropping into the 70s. Its been about 14 months now, Kylie has just had her 4th birthday and is doing GREAT.
At her very recent annual check up, we noticed that she has gained more weight than ever in such a short amount of time. It’s like they “flipped a hunger switch on” when they closed her fenestration. And I’m so glad we made the decision. Kylie runs and plays and keeps up with her older and younger brothers and unless we tell someone or show her scars, no one could ever imagine what she’s been through to get where she is today.
Born January 1st, 2009
PA Band 1/20/2009
Fenestration closure 10/17/2012
Some said she would never survive and look at her now!!
Shes 1 in 100″
Go Kylie! Keep kicking CHD’s butt!