Quinn’s ‘Special’ Heart {CHD Awareness}

Almost four years has passed since my husband Matt and I received news that would turn our world upside down. Yet, I can be brought to those minutes, those hours, and those days of hopelessness in a split second. I remember the heart break, the pleas to God, the prayers, and the veils of despair. I had no idea the roller coaster we were in for, but now I’m amazed to sit back and reflect on God’s faithfulness through it all.

I was lying on the ultrasound table for what had to have been my fourth or fifth anatomy ultrasound. I was 22 weeks along and five weeks earlier we discovered our prayers had been answered. Two “healthy” babies, one little boy {Ryan} and one little girl {Quinn} – our little miracles – would make their arrival in the summer of 2010. After enduring several years of infertility and turning to invitro fertilization as our last hope, our excitement was through the roof. My biggest concerns, somewhat naively as I look back now, were just preparing for the babies :: getting organized in my typical A-type fashion, choosing names, selecting matching baby décor, and reading every twin book I could get my hands on. However, at about 19 weeks, my cervix showed signs of “thinning” so my obgyn decided to place a cerclage to keep the babies safe until delivery. We continued to monitor my cerclage and cervix weekly, which is how I found myself in the ultrasound room quite regularly. Truly I didn’t mind. The most annoying part was that my daughter had a love affair with curling up next to my interior vena cava, and I threatened to pass out during every sonogram.

So at this “routine” ultrasound, I expected much of the same and didn’t even ask for my husband to attend. I just never thought it would be a big deal. Until the technician starting muttering things, and I overheard her say “C’mon, baby girl, let me just see that heart.” Those words caused me to almost bolt upright, and I started to stare at the screen more intensely at the red and blue markers indicating blood flow bouncing around. I may have well just been staring at a toddler’s finger painting, nothing made sense to me, but I was willing my brain to process something. Anything. Why was it taking so long? Why did she keep going back to my little girl’s heart? Tears started to run down my face uncontrollably, and before I knew it, she was wiping my belly off. I’ll never forget what she said as she handed me a tissue, “Please know that your doctor is probably going to request that you have a specialist do a high-level ultrasound. Your little girl was moving so much that I’m not sure I could get an accurate picture of her heart function.”

Say what?

I knew that she must have some sort of legal binding so she couldn’t really say what she wanted to say. And of course, my doctor was traveling that week so I was stuck with the NP who didn’t know me {no offense to nurse practitioners out there – it’s just that I had a very special bond with my ob and she KNEW me, both as a patient and a friend.} The NP handed me a piece of paper with a number to call to schedule with the high-risk perinatologist. And out the door I went. It was a beautiful day, yet I felt like the world just crashed in on me. Even though I knew truly nothing at that point, I just knew instinctively we had reached a turning point in this pregnancy.

I tried to put on a brave face for my husband, my mom, and my boss. Yet I couldn’t shake the feeling that something was wrong. Then my doctor’s office called, and in addition to scheduling with the specialist, she also wanted me to make an appointment at Texas Children’s Hospital for a fetal echocardiogram. When I asked why {since all the information I had at that point was that my daughter wasn’t in a good position}, the nurse said, “Because we have reason to suspect your daughter’s heart has a defect.”

Time stopped. The word “defect” had been voiced. And my own heart broke into a million pieces.

We had about a week before the appointments could start, and I alternated between spending time crying out to God, bawling myself to sleep, and walking through a haze of confusion during the day. Finally after two misdiagnoses, appointments with various specialists, and the fetal cardiologist {who was an absolute gift from God with her compassion and love}, we received the final verdict ::

Quinn had a Congenital Heart Defect called “Double Outlet Right Ventricle with Pulmonary Stenosis, Ventricular Septal Defect, and Atrial Septal Defect.” I’ll spare you the details of what all of that actually means, but it’s an extremely rare type of defect seen in less than 1% of all children born with a CHD. Without intervention, the lesion is fatal, usually by age 2. Her heart was very “special” indeed. She informed us with multiple surgeries and interventions that Quinn had a good chance of survival. However, it was absolutely critical that I did everything I could to keep the babies in until 34 weeks to give her the best chance of survival. No pressure, right? The bright light was that Ryan showed no signs of being affected. Everything was perfect with his heart and other organs, and Quinn was a most active inhabitant in my uterus. Poor guy endured lots of side kicks from his sister – a sign of things to come for sure. As my cardiologist said when she saw how spirited little Q was, “You’re going to have your hands full with this one.” Yes, God. I’ll take it. Let it be.

I went through the motions of preparing for my little ones – attending beautiful showers hosted by dear friends and trying to act the part of the “happy pregnant lady.” And I was. I was thrilled to be pregnant. But I had no idea what was in store for us when the babies arrived. Here I was hanging beautiful pink dresses in a closet, lovingly arranging a multitude of bows, and buying everything pink I could get my hands on…and I had no idea if my daughter would even come to this earthly home.

God showed me such Grace during this time. He knew I needed time to mourn, to adjust, and to prepare. He knew my innermost thoughts and allowed me to be a little angry with him – I just couldn’t wrap my head around the injustice of having to fight so long to get pregnant, to hold my little ones in my womb, and then to possibly have my dreams stripped away from me. But a few weeks prior to their birth, I made my peace. Instead of “why us?” my dialog changed to “why not us?” 1 in 100 children are born with some type of Congenital Heart Defect. And it wasn’t by accident that Quinn became a part of that grim statistic. I still do not understand all the reasons why, but I can say now {and probably will never on this side of Heaven}, that it was all part of His grand design for her life, and for ours.

On June 3rd, 2010, at 36 weeks gestation, my little ones entered this world with much fanfare. And I mean that from the sheer amount of doctors, nurses, and other healthcare workers who mobilized like a well-oiled machine in the operating room. I suppose at that moment I realized the gravity of what was about to happen when my doctor firmly stated that no cameras would be in the operating room. Because of her condition, Quinn was safe in my womb – on the outside, it was anyone’s guess how her heart and lungs would react. Blessedly, they both came out crying. Ryan first, and then Quinn. {She was the loudest – shocking!} They were immediately whisked away, and I had no idea when I would see them again as the plan was for both of them to head straight to the NICU. Surprisingly, Quinn was stable enough to be wheeled into the OR in her little incubator, and I got to see my little girl for the first time. She was so little, so skinny, but perfectly precious. After a quick hello and me straining my neck to soak in every bit of her, she was whisked away. It would be 12 long hours before I could see her again. Against all predictions, Ryan came straight to recovery with me and remained in our room for the next four days. Trying to take care of his needs and focus on that little newborn while one remained a hospital and about three elevators away was massively painful, but I knew Quinn was in the best hands.

Fast forward seven long weeks and Quinn was finally strong enough to join her “big” brother at home. We adjusted to the oxygen tanks, pulse oxygen monitors, feeding charts, dietician appointments, and everything else that came along with not just caring for a preemie, but one with a special heart. Initial predictions from the cardiology team put her first surgery at about 2 months of age. However, my little warrior continued to rally. Two months turned into six, then into 12. Quinn continued to shock the doctors with how well she was holding her oxygen levels {at about 82% when you and I have 99-100%}. The goal now was to get my sweet petite to grow so that she would have the best surgical outcome.

Finally at 15 months of age, it was “go time.” We signed excruciatingly painful paperwork, basically handing her over to the doctors knowing that there was a 15-20% chance she wouldn’t come back to our arms. Matt and I kissed our little girl over and over again, actually laughed when they gave her the “drunk” medicine so she wouldn’t remember the trauma of being taken away, and then made the long trek down to the waiting room, our hearts heavy like I’ve never known before.

I can’t speak highly enough of the team at Texas Children’s. They updated us almost hourly as to where they were in the process, providing us enough calm and reassurance that everything was going to plan. And then picture upon picture began appearing in my newsfeed on Facebook. Dear friends and family, near and far, were wearing green attire {Q’s color} in support of Team Quinn and sent us emails, texts, and messages throughout the day. I’ve never felt so loved and supported in my life. Not to mention the 10 or so people who had all gathered to wait it out with us – I’m forever indebted to them for their generous spirits.

After about seven hours, the surgery was complete, and we were allowed the first peek at our little girl. We had been warned about all the tubes, machines, and ventilators, but nothing quite prepares you for such a sight. Thinking of it still takes my breath away. As I held her warm little hand, I noticed a miracle though – for the first time in her life, her skin was a rosy pink flush from the oxygen her heart could now fully pump. Before she had about an 80% pulse ox rate and now she was at a full 100%. Although she looked extremely ill because of everything she was hooked up to, all I could see was that beautiful skin. And in that moment, I cried tears of joy.

The next days and weeks were a blur. Recovery was horrendous. We were discharged just six days post-op {I had to fight for even that last day}, and something just didn’t feel right. But the doctors assured us that once we got home, we’d see that gorgeous smile again and hear the infectious giggles that were music to our ears. Instead, Quinn seemed to backslide. She moaned almost constantly, did not want to eat, always wanted to be held, basically very un-Quinn like. Even though I wasn’t exactly sure what recovery from open-heart surgery looked like, I knew something was very wrong. The timeline gets sketchy here, but at some point soon after release, I took Quinn back to the ER where they had to administer a huge amount of morphine to eradicate her pain. They did a chest x-ray and determined that she had pleural effusion, basically huge pockets of fluid around her lungs, which seemed to cause her massive discomfort. We were readmitted for another four days or so while they used IV and then oral drugs to help drain off the fluid, and then we were sent home again.

Quinn’s condition continued to deteriorate. Nothing pacified her and so rinse, repeat, we headed back to the doctor. The pleural effusion was back and again diuretics were started. They assured us this was just a complication of a very intensive heart surgery and was not outside the norm. However, I couldn’t shake the feeling that it was something beyond the fluid. Then I became the momma bear that every doctor and nurse on Floor 15 just LOVED seeing every morning . I was fighting for her life – I just didn’t know how true that was until a couple of days later.

Finally, a repeat echocardiogram was ordered to check out the heart function. To our shock and dismay, it showed that part of the repair patch had come undone causing the pressures in her heart to become unbalanced, swelling her liver to twice the size it should be, and most devastatingly, sending her into right heart failure. All this time, her heart was failing, and we hadn’t a clue. {We still do not know why the patch “blew.” Most likely she probably had a spike in her blood pressure during a critical part of recovery from the first. However, the “why” wasn’t important then and isn’t now. It was the “what” – what to do now that we chose to focus on.} Emergency surgery was scheduled for the next day to repair “the repair” and our world crashed down again. How could we possibly send this child into another surgery? I had already done this once, and I just didn’t think I could hand her over again. Yet the morning of surgery during my daily devotion, I had a sense of peace and calm wash over me like nothing I’ve ever experienced before – knowing THIS would work. I could almost audibly hear Him comfort me. That could only been of God.

It was surreal the next morning. Saturday heart surgeries are not the norm, so we were the only ones in the cardiac waiting area. I remember college football was on, and I half-heartedly stared at the screen as we waited to hear from the surgical team. But mostly, I just prayed, walked the hospital, and blogged updates. A long 6 hours later, Quinn was out of surgery, and it was like Groundhog’s Day to see her hooked up again. This time she was given the largest recovery room on the floor which I appreciated for all the space and not having to worry about tripping over copious amounts of wires and tubing. Only later did I find out that those particular rooms, largest and closest to the elevators, are reserved especially for the sickest kiddos – the ones that may crash and require intervention at any moment. I’m so glad I didn’t learn that little nugget of wisdom during our stay there.

This recovery was a complete 180 from her first. She was smiling by day 2, sitting up on day 3, and slamming down chicken nuggets like her life depended on it by day 4. While she clearly had some strength issues and was unable to hold her body weight under her shaky legs after being on her back for 6 plus weeks, she was doing fantastic. We were finally released on Halloween and got home just in time to do a little trick or treating around the block. And I was reminded just how strong the twin bond is when Quinn crawled over to Ryan, using her last little bit of strength, laid her head in his lap, and he stroked her hair. I melt.

Since her surgeries, Quinn’s life has mostly returned to normal, save for the regular cardiologist appointments and two sedated MRI’s to check out her heart function. Although her heart is “different,” she is able to do whatever she wants, no restrictions. She plays soccer, does gymnastics, runs around the playground, and tortures her twin brother. Looking at this child, you would never know all she has been through in her short 3 ½ years of life. Her scar, or what we call her “zipper,” is the only residual physical effect you can see – and only if you look very closely. Yet when I see it as she bathes or changes clothes, I can’t help but close my eyes and whisper fervent and thankful prayers to God that Quinn is with us. To me, the scar is “God’s handprints” and a testament to every person who lifted her up in prayer during her surgeries and recoveries.

Quinn discovered her “zipper” around nine months ago when Daddy was bathing her one night. She asked him what it was, and he said, “That’s where the doctors went in and fixed your heart.” She replied, “My heart was broken?” “No, baby. Your heart was never, ever broken. It was just very special and needed a little help from the doctors.” As I was cooking in the kitchen, Quinn came hurdling downstairs and said, “Mommy, Mommy! I have a special heart and the doctors fixed it! I’m okay now!” Oh, from the mouths of babes. She is beyond her years in wisdom and understanding of her situation. Part of that makes my heart break that she should have to deal with such things, but the other part is so proud that my heart could burst into a million pieces – this time in the best way possible.

The future looks bright for Quinn. While the cardiologists do anticipate more surgeries and/or interventions later on in life, we choose to focus on the present and where she is right now. Her heart defect does not define her, and it never will. It may encompass a few heart-breaking chapters, but it’s definitely not the entire book of Quinn. Our prayer for her is that she knows this roller coaster has, and will continue, to only make her stronger. If Quinnie can handle heart surgery and all the subsequent procedures, echos, and doctor visits with such amazing maturity and grace, then we believe she can triumph over any adversity. No limitations. She can be anything she wants to be. I believe that’s every mother’s wish for their children – it’s just been illuminated a little brighter by her incredible journey thus far.

Today Houston Moms Blog is dedicated to spreading awareness about congenital heart defects.  Please join us as inspirational local moms share the journeys of themselves and their little ones all throughout the day.  Our hope is that through this series, we can shed some light on CHDs and that these courageous fighters will become the voice of heart defects here in Houston.  To read more, please click here.

[hr] About Meagan C.

Meagan is a Dallas native who has lived in the Katy area for over 8 years. She kicked a soccer ball all the way to Louisiana to attend college at her family’s alma mater of LSU, where she promptly fell in love with a Texas Aggie in Baton Rouge for an internship. After swimming back to Texas following Hurricane Katrina, Matt and Meagan fell in love with the Houston area and now couldn’t imagine living anywhere else. Following several years of infertility, their miracle twins Ryan and Quinn were born in June of 2010. She believes there is nothing better than a chilled glass of Pinot Grigio, a large Sonic Diet Coke, sushi take-out, Girls Nights Out, and a mindless book to curl up with. Besides playing chauffeur to the whims of 3 ½ year olds, Meagan also works part-time as the Communications Director for a non-profit and does a bit of freelance writing with her “free” time. You can keep up with Meagan at The Clanahan Fam.