Today is February 7th, also known as Wear Red Day. This week, many heart families are trying to raise awareness for CHD, the most common birth defect, which affects 1% of all births in the US. Our family is in that lucky 1% — Actually, our family hit a much more rare kind of jackpot. When you look up Sunley’s specific anatomy, Google has no results. I don’t even have a statistic for how rare her heart is. But her perfect little heart is exactly what my heart needed. Don’t get me wrong — I would heal my sweet baby girl if I could. But since I can not, I will look for any silver lining that comes with such a horrible diagnosis.

Sunley’s diagnosis is classified as Hypoplastic Right Heart Syndrome (meaning a small right ventricle), but she actually has no right ventricle at all. Sunley has Transposition of the Greater Arteries, Double Inlet Left Ventricle, and Double Outlet Left Ventricle. (To be fair, some doctors can’t even fully agree on her diagnosis because her heart anatomy is so intricately complicated.) One of her doctors said that her heart anatomy is something you typically only see once in a career. While every course of treatment for each baby is different (two kids can have the same diagnosis but need different treatments), Sunley’s treatment basically follows the treatment plan for HLHS kiddos. This means that she has already had 2 open heart surgeries (a PA Banding and a Glenn with a DKS), 1 Cath, and numerous hospital stays, pokes, feeding tubes, all of it. We are currently waiting for her next surgery, the Fontan procedure. It’s a weird space to be in — waiting for your baby’s heart to begin failing…again. We loosely expect that next surgery to be in 2021, but each appointment holds the possibility of unexpected news, so we only pencil in plans. My understanding of her diagnosis is still growing — it is incredibly complicated, and I often struggle to understand the big picture of it — But, right now my understanding is that you want to try and hit the sweet spot with the timing of the Fontan. While it should, if successful, give her many years, the Fontan circulation is extremely hard on the liver. Often (often? Sometimes? Always? Still learning), if a Fontan patient lives to adulthood, they can experience major problems with their heart and liver. It is a big possibility that Sunley will someday need a heart, liver, or heart AND liver transplant. We hope that will not be the case. We hope that she will outlive us. But whatever happens, we walk into it confidently with the joy of the Lord and the hope of Heaven always present. These surgeries do not cure anything; They put a bandaid over an open wound that will never heal. But I will gladly take every moment I have while our family is whole, and I pray I will never have to experience some of the things I was initially told to expect.

The journey of being Sunley’s mom (while parenting my other sweet babies) has been incredibly wonderful for me. But I will tell you that the worst, most excruciating part, by far, was the diagnosis process. You can read about that here, but let’s just say I was thrown into the medical world— its politics, its good and bad sides— all at once and it was just totally overwhelming. Throughout every step, God provided exactly what we needed, mostly in the form of encouraging family members, friends, and complete strangers (ahem, angels) who let us know they were walking with us. Preparing for her birth was also a weird space to live in, much like waiting for the Fontan now — Just lots of waiting, wondering, and praying. There were so many doctors coming in and out when she was born — probably 15-20. She had her first little procedure in the room, and I was happy to be there for it. Speaking up in front of doctors (something I’ve really had to work at) started immediately, as I had to ask to hold her while they prepared their equipment. Actually, now that I think about it, I think Derek asked and I was too shy. I don’t have too much of a problem with asking questions nowadays ;)

Photos Below by Lori Faber, who flew all the way to Houston just to take these photos for me. Forever grateful.

Here is my original two-part blog post from when we first received her diagnosis — there are a few mistakes, as I was still learning about it all, but you get the idea.

Thank you for your continued prayers. If you wear red today, thank you from the bottom of my two-ventricle heart!