To be honest, to summarize Quinn's heart story into a concise, pretty little story is immensely difficult. The journey has been long, marked with amazing ups and some tremendous downs --- but we are blessed that her story has a happy ending. We weren't always so sure it would be that way.
Quinn was diagnosed in utero at around 24 weeks with a Congenital Heart Defect called "Double Outlet Right Ventricle with Pulmonary Stenosis and Ventricular Septal Defect". To say we were devestated would be an understatement. The scary thing about CHD's is though there are "types", many of them are very specific and unique to each child -- meaning they don't always manifest and act the same way in every baby.
We were told that it was critical I carry the twins to at least 34 weeks to give Quinn a fighting chance. Much of my latter pregnancy was spent holding my breath and praying endlessly. By His Grace, we made it to almost 36 weeks before delivery. Quinn was fairly sick when she was born and undersized - failure to thrive in utero can be a common problem for "heart babies". She spent the first 7 weeks of her life in the NICU - much of it due to her apnea and feeding issues, not her heart. By some miracle, it had little or no effect on her little body, minus her low oxygen saturations (around 83-85%). The doctors were content to let her "hang" in those percentages but warned us that they would eventually drop and then it would be surgery time.
We were told to prepare for multiple surgeries in her lifetime. They anticipated having to perform her first surgery at around 6 months of life and that likely they would have to replace her Pulmonary Artery with an artificial one. The artificial nature meant that she would eventually outgrow it throughout childhood and into adulthood, so we would have at least 2-3 more surgeries. But Quinn was a champ --- and where her oxygen sats should have dropped well below 80%, she stabilized at her norm, 82-85%. Thank God as this provided us the precious gift of time, time for her to grow, time for that PA to get as large as possible and time for us to wrap our minds around this surgery thing. It also gave us ample time to continue to research her condition and find the very best surgeon for her (actually we were fortunate enough to be introduced to him while I was still pregnant, so he knew about little Q from the time she was just a tiny little fetus).
Finally at 15 months, it was "go" time. Her disease is typically fatal by 2-3 years old, and the surgeons wanted to make sure she had her repair before the madness of cold and flu season. We already had held our breath through one season and didn't want to have to do that again (a cold/RSV could have devestating impacts on an unrepaired heart child). So with shaking hands, we scheduled.
September 19th was the date of her catheter. We anticipated that being more of a diagnostic tool and only take about 3 hours. The idea was that it would give the surgeons a better picture of what was going on to prepare for her surgery. However, that catheter turned into a 6 hour event as the doctors discovered a "collateral vessel" they needed to coil off with a tiny spring. Basically because her blood and oxygen flows had been so messed up for so many months, her body started forming these useless vessels in an effort to send more oxygenated blood into her system. Luckily, there was only one big one and after many hours, they were able to reach it and get the supply cut off. Quinn is now the proud owner of her very own hardware that will last a lifetime : )
Surgery was scheduled for September 27th, 2011. The emotions of that night before and day of are still so raw. I still find it hard to talk or write about. Handing my child over that morning was one of the hardest things I've ever had to do . Her chances of survival were good - about 85% - but of course, I couldn't help but think of the bad 15%. That day I learned what it truly meant to surrender control and turn it all over to God. I also learned what an amazing support groups we had for Q - friends, strangers, near and far, posted pictures on our facebook page in either their Team Quinn tshirts or wearing green (her color), left encouraging messages on our blog, texted constantly, and sent up multiple prayers to our Father. To say that I am grateful would be a tremendous understatement.
By the end of the very long 7 hour surgery, we learned they were able to repair her pulmonary artery vs replacement - PRAISE GOD! It was a huge prayer answered. They were also able to patch up her various holes, redirect the blood flow, widen the PA, and a few other things that I will still never understand. Her defect was quite complicated --- and even more complicated than they thought once they actually got in there. Again we were reminded that while heart defects have names, each child has individual circumstances that affect their outcomes and dictate how the surgeons repair.
We spent 6 days total in the hospital and then we were discharged. I was massively uncomfortable leaving the hospital because I felt like something just wasn't "right" --- but I chalked it up to just not knowing how a toddler should act after major open heart surgery. Quinn still had not even cracked a smile but the doctors assured me she would thrive being at home and would be back to herself before no time.
Well, after a few days at home and some panicked calls, it was clear that Quinn was not improving. She moaned constantly and cried if we didn't hold her, very "un-Q like". I finally took her to the ER where she was admitted with a massive case of pleural effusion (basically large pockets of fluid around her lungs). We were told it was a common side effect of going on bypass and having heart surgery. She was given a strict course of IV diuretics, in the hospital for 4 more days, and then sent home once again.
Rinse, repeat. Home for a few more days and Quinn continued her backslide. I was losing my daughter and felt that no one was listening to me. She stopped eating and would only drink some milk. She became inconsolable. I took her to our pediatrician, told him what was going on, and asked that he please do an xray. Sure enough, the effusion was back and we were sent immediately back to the ER and re-admitted to the hospital.
After three days in the hospital, it was finally detected on her echocardiogram that the patch on her PA was leaking. This caused her heart to become unbalanced in the oxygen flow, contributed to the pleural effusions, and also caused periocardial effusion - fluid around her heart. In the process, because of the "unbalancing", her liver became enlarged and was pushed down about 2 inches on her tiny body, causing a tremendous amount of pain. She became extremely swollen from all the fluid and was absolutely miserable. We were told on Friday, October 21st that Quinn was going into right heart failure. The only cure was another heart surgery to repair the patch. They scheduled it for the next day, a Saturday. That's when we realized how critical it was --- Saturday heart surgeries are not the exactly the norm at Texas Children's.
So after making frantic phone calls to gather family and friends, we sent our baby girl back into surgery. This time, I felt different. I felt like this was "it". This was the repair. I felt a peace that I cannot describe and to this day, cannot make sense of. It only could have come from above. The surgery was just about 6 hours and our amazing surgeon was able to repair the patch and sew it very tightly back on : ) (They still can't explain why the first patch came undone --- it could have been that she had a spike in blood pressure at some critical point of her recovery and it blew the patch. We'll never know and we choose not to focus on the "why")
This time we took recovery very slowly and patiently. Minus a few setbacks with a stubborn pocket of effusion that wouldn't drain and required a new chest tube, "our" Quinn came back to us. Whereas she never smiled, giggled, or played after her first surgery --- this recovery was a 180. As she came out of sedation, she was already playing games. By day 3, she was smiling. By day 6, we had giggles and babbles. Music to our ears. We spent about 9 or 10 days in the hospital following that surgery and came home just in time to trick or treat on Halloween.
Quinn's heart journey is not over. She will require at least one more surgery in her lifetime to repair a "bad" pulmonary valve. They will watch it closely over the years, but it could be decades before it's necessary to be replaced. Again, the precious gift of time. By then, it could be that PVs are replaced by cathether and not open-heart. That's why our family passionately supports research and development in the field of CHD's. The technology of what will come down the road for these kids is incredible.
In addition to the bad PV, She also has very narrow branch pulmonary arteries, which will also need intervention, most likely in the next year or two. They should be able to go in via catheter procedure and stent open those arteries with a balloon, similar to what they would do for an adult that has had a heart attack. We also anticipate a surgery of some type to help her right ventricle pump effectively but timeframe on that one is still very much up in the air. We see our cardiologist regularly to keep an eye on those arteries and her PV and ensure that we head off any complications well in advance.
Quinn currently has NO restrictions on what she is able to do. She is allowed to run, jump, and play like any other child. She can attend Little Gym, take swimming lessons, or go to preschool just like her twin brother. What a huge blessing. Our prayer is that Q's CHD does NOT define her life or limit her any way. It is a part of her story, and ours, which is why we talk about it so much. But we pray that God is glorified through her journey and that when she is old enough to understand, that it becomes part of her testimony of a living, breathing miracle. Without the prayers of countless friends, family and even strangers, we know our little girl would not be where she is today. We are forever indebted to those who prayed for Q --- we love you all.
If you have any questions on CHD's, I'd love to hear from you. Please contact me at firstname.lastname@example.org or leave a comment below. If you would like more information on the CHD world, I highly encourage you to visit www.heartwaves.org - the "hub" for congenital heart defects.