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Parker’s Story

written by Emily, Parker’s mother

In 2007, I had a pretty uneventful pregnancy with my 2nd child. We weren’t sure whether it was a boy or a girl until I was about eight months pregnant. So we chose the name Parker, because I was convinced it was a boy.   Imagine our surprise when we found out it was a girl. By that point, the baby’s name was Parker and we figured, why not? Parker is cute for a girl’s name too!

I had taken great care of myself during the pregnancy. No caffeine, took my prenatal vitamins, regular checkups. Everything seemed great! I went in one day early to be induced because at my last checkup I was low on amniotic fluid. It was time to meet this baby!!

I had her in less than four hours. She was beautiful and pink and sweet. She picked right up on nursing like a champ. She wanted to eat constantly. On day two of our hospital stay, I was discharged from the hospital. I sent Mark and Mathias home so that big brother Mathias could get a nap before Parker came home!!

Our pediatrician, Dr. Lara Finnila, came in to do Parker’s checkup before she discharged her home. I was SO ready for my own bed, shower, house, etc. As she listened to Parker’s heart, she told me she heard a murmur. It had gotten slightly louder so she wanted to do a quick EKG before we went home. It was a Friday and we were to come in to the office to follow up with her on Monday. She explained that a lot of children were born with a murmur and that most of the time it was a tiny hole that closed on its own. She didn’t want me to worry. About two- three minutes later, my hospital room phone rang. It was Dr. Finnila explaining that she’d actually like to do an echocardiogram. (I had to ask what that was!!) It’s an ultrasound of the heart.

I’ll never know what changed her mind, but I’m convinced to this day that she saved Parker’s life in that moment.

In the next few hours we learned that Parker had a very severe, complex Congenital Heart Defect. Dr. Finnila told me she had never heard of it but that it was very bad. We were sent to the ICU at Texas Women’s Hospital and then transferred by ambulance to Texas Children’s Hospital. I can’t explain the terror of going from thinking you have a perfectly healthy child to riding in an ambulance after a very admired health professional has told you they have NO IDEA what is wrong with your child.

Dr. Finnila met us at the ICU and we were then introduced to the cardiology team at TCH. They explained that Parker was born with a very rare condition called Double Inlet Left Ventricle. She also had L-Transposition of the Great Arteries and holes in between her Atria and Ventricles – Atrial Septal Defects (ASD) and a large Ventricular Septal Defect (VSD). Basically when Parker’s heart formed, the left ventricle formed on the right side. The right ventricle didn’t form at all. And her Aorta (which sends oxygenated blood to the body) was down in that “hypoplastic right ventricle.” In fact, a VSD in most kids would be a bad thing. In Parker’s case, it was the only thing keeping her alive. As her left ventricle squeezed, blood was able to travel through that large VSD and go out her aorta.

As you can imagine, over the next two weeks in the NICU, we all became amateur cardiologists. Learning as much as we could about her condition and finding out the surgical plans with Cardiologists and Cardiovascular Surgeons.

It was the most terrifying time of my life. I had no idea what the future would bring. Would Parker survive? If she did survive, would she have a good quality of life? How were we going to survive on one income? Was my son going to be ok? It’s also hard to think about all of these things as a post partum mom who hasn’t slept in weeks. And the little sleep I did get was in a chair, pumping every three hours, in a loud, crowded NICU. Running to a different floor to shower every other day. Trying to make sure I didn’t completely neglect my other child. Relying on her father to work and take care of a toddler during the week, and relieve me on the weekends. Throwing a grandparent in there when we both needed a break. It was rough.

Fortunately, we are in Houston. Texas Children’s Hospital is ranked #2 in Pediatric Cardiovascular Surgery. So we couldn’t have been in better hands. I thank God for that every day!

Over the next year, Parker would go through a PA Band open heart surgery at three weeks old. We were inpatient for five weeks due to complications with her bowels after surgery. It’s hard being that little and going through something that big. When your body shunts all the blood to the heart during surgery, sometimes other parts of your body (in this case, Parker’s gut) don’t get enough.

At nine months old, Parker had the first stage of her Fontan surgery. This was called the Bi-Directional Glenn. It basically takes the large vessel that supplies the top half of the body with oxygen and hooks it directly to the lungs, rather than using the right side of the heart as a pumping chamber. Parker developed more complications after this surgery. We found out days before that she had developed a blood clot in her leg from hip to ankle. Her team had to thin her blood enough to try to get rid of the clot, but not so much that she lost too much blood from her three chest tubes. Those days after surgery were very touch and go. Then she developed such a bad infection in her bladder that it actually has scarred her kidneys. This stay was over six weeks long!!!

But life got a lot better after the Glenn.   She started Early Childhood Intervention to finally start developing all those muscles to sit up and maybe crawl someday!! She was happier, felt better and life was finally starting to feel somewhat normal. We still had daily reminders. She took INCREDIBLE amounts of medicine. We had to give her twice daily shots of blood thinners in her tiny legs.   And we saw endless streams doctors, some we saw almost every week. At least we were getting a little sleep J

The next few years were pretty uneventful. She had two other surgeries – She had a bilateral uretal re-implantation. Basically they had to change the angle that her tubes between her bladder and kidneys were placed. That was a rough one!! Then she had her adenoids and tonsils out to try to knock out her chronic sinus infections. That one was a piece of cake!

Parker continued to amaze us with her incredible vocabulary from an early age. She was smart and funny and vocal. She started crawling around 22 months old and FINALLY walked at age two!!

As she got closer to her 4th birthday, her oxygen levels continued to get lower and lower. By the summer of 2011 she was on oxygen and couldn’t really climb the stairs or walk any distances at all. We knew that meant it was time for her Fontan operation.

She underwent her 3rd surgery in September of 2011. The Fontan operation takes the large vessel that supplies the lower half of the body and hooks it directly to the lungs, instead of the heart. After this surgery, Parker would officially only have two chambers in heart heart. All of the work of the right side of her heart, the side used to pump blood to the lungs, would now be a completely passive circuit.

This one seemed the worst for me as a mother. It was looming over our heads for two years so we had plenty of time to worry about it. Also, now Parker could talk. She could say “don’t let them hurt me, Mommy” and “no pokes, please no pokes!” That is ROUGH!!!

The surgery went well and although there were things that couldn’t be fixed exactly how they wanted them, she still came out with oxygen levels around 100%, which we were told to never expect! For the first time in Parker’s life, she was PINK!! No blue lips, fingers, toes. It almost didn’t look real!

We had a lot of complications with fluid after the Fontan, which is common. We even had to go back in and get another chest tube, which was really traumatic! Parker would sleep holding that tube so no one could get near it without waking her up. Smart girl!

After she finally healed completely from the Fontan, she was a new person!! She had more energy than ever before. She wasn’t out of breath. She was happy and we were DONE with oxygen!!

Parker’s life isn’t easy. She gets sick more often than other kids. And she can’t recover as quickly. She doesn’t tolerate much exercise, so it’s hard to keep up with friends. She has other medical issues like anxiety and migraines. But I’m telling you, that girl has spunk and character like you can’t believe.

We work VERY hard to find activities that she loves and fit with her life. She is a serious music lover! She loves art and fashion design. She also rides horses. This is such a great activity for her. It helps with her anxiety, confidence, and the horses bring her endless joy!!

We don’t know what the future has in store for Parker. But what we do know is that she is loved unconditionally, followed by the best medical staff we could ask for, surrounded by a family that would drop everything to help her. She is a happy, spunky, sarcastic, smart, brave, hilarious girl. We couldn’t ask for anything more!

 

Posted in: ASD, CHD, Congenital Heart Defect, DILV, Heart Heroes, Houston, open-heart surgery, Superhero Heart Run, Texas, Texas Children's Hospital, TGA, VSD

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