I ended my last post about Sophia with intentions of continuing her story through her first and second heart surgeries, but in the middle of piecing it all together, Sophia had another unexpected heart surgery. It’s hard for me to write from a place that’s still very much unsure—a place where every piece of hopeful news has a “but” attached to it, where the prognosis can change with one CT scan, and a place where I’ve asked God to reconsider how hard he was being on us.
Where I left you in my last post was preparing for Sophia’s first heart surgery, five days after she was born. In less than a week, I had underwent a major abdominal surgery, became a mom to a little human, found out my little human’s heart wasn’t put together in a way that would allow her have a normal life, and learned that this same little human’s heart needed saving—sooner than later otherwise there would be no later.
We were fortunate to have a world-renowned cardio thoracic surgeon operate on Sophia’s heart—again, I never knew how privileged we are to have access to quality healthcare; it’s not lost on me that if Sophia were to have been born in another country, she probably wouldn’t be with us today. Based on numerous imaging tests, Sophia’s operation seemed like it would be straightforward. Her right pulmonary artery needed to be removed from where it was and attached to the right place so her lungs could function correctly. The pulmonary arteries are the vessels responsible for carrying de-oxygenated blood from the heart to the left and right lung. With her right pulmonary artery misplaced, it meant that her right lung wasn’t receiving blood flow. It also meant that her left lung was receiving too much.
On the day of Sophia’s surgery, was I scared? Not really. I had never given birth before. I had never had a baby before. I didn’t know what to be afraid of. Sophia was in surgery for about four hours and when we heard that it was successful, I remember being relieved that we could get back on track to normal, whatever that means. An emergency C-section, a NICU stay, and a heart surgery had to be all that God had planned for us. I held tightly to “God won’t give you more than you can handle” and surely He wouldn’t expect us to take on anything beyond that.
Family life specialists had already prepared us for what she would look like coming back from surgery. A breathing tube, chest tube, IVs, and electrodes covered her little body, so much so that there weren’t many places we could touch her. In the cardiovascular intensive care unit, each patient is assigned to one nurse so she was monitored 24/7. With only two chairs in the room, we couldn’t spend the night and since I was still recovering from surgery, we went home to sleep. We had a direct number to our nurse to check on Sophia throughout the night. When I say we went home to sleep, I mean we went home to lie in bed and drift in and out of sleep with our phones in hand, anxious we might miss a call.
The next morning, we returned to the hospital to a sleeping Sophia. After surgery, they run tests, tests, and more tests to make sure the body is able to withstand the trauma of recovery. All of her tests pointed to a successful surgery, except for one. The test where we found out that Sophia had another heart defect. The one where we found out Sophia needed surgery. Again. The next day.
Have you ever had moments where you’ve been fighting fear and feelings for so long, that even the slightest unexpected news comes as a massive wrecking ball to any hope and faith you had left? That’s what that moment was for us. I had a good attitude. I handled the news of the first surgery with all of those things that make people think you are a strong person. But another surgery? Another defect? Too much. Too hard. Too unfair.
Sophia’s first defect was medically declared an anomalous origin of the right pulmonary artery; her second defect was called a coarctation of the aorta, a narrowing of the aorta that happens in the blood vessel causing a blockage of blood flow. If blood can’t flow freely throughout the body, your heart has to pump harder to get it to go where it needs to go. If your heart has to work too hard, it ultimately, fails.
I don’t know what else to tell you about these two surgeries because in comparison to what lie ahead for us, we barely remember much about these few weeks in the hospital. We spent a lot of time there. We learned CPR, we learned how to fill syringes and administer medicine, we learned how to tell if Sophia’s heart wasn’t doing what it should, we learned how to read her blood pressure, we learned how to care for the oxygen tank that come everywhere with us. We learned how to keep her alive. And when we drove her home for the first time weeks later, I remember feeling so silly for how worried I was about figuring out her car seat. Because in the back of the car now was a little human hooked up to an oxygen tank and a device that sounded an alarm every time her oxygen level dipped. The first night, neither Chad or I slept which is not unlike the experience each and every other new parent has. With any movement, Sophia’s pulse oximeter sounded an alarm that she might not be breathing or getting enough oxygen. It was hell. Our hearts were always racing, our minds were always running.
We had cardiology appointments, pediatrician appointments, in-home nurse appointments, oxygen tank delivery appointments—I was grateful to have so many eyes on Sophia’s health, but I felt so unsure of myself as a new mom when so many people were telling me what to do. I didn’t know how to assimilate this new baby into my life when an oxygen tank and her oximeter had to go everywhere with us. Plus, with COVID-19 in full force, we were often isolated from our friends and family who helped in every way they could from a distance. We lived our lives one appointment, one test, one blood pressure check, one phone call at a time. Sophia was home with us for three weeks and we started to adapt to our new normal.
On September 11th, we went back to the hospital for another echo and pre-procedure appointment with the team who would perform the procedure in two weeks. It was supposed to be routine. It should have been routine. I needed it to be routine. It wasn’t routine and nothing was going to be routine for a very long time. Sophia hadn’t gained any weight. Looking back now, I can see how sick she looked, but I didn’t know then. I didn’t know she was still sick; it haunted me then and it haunts me now. I am still desperately afraid of missing signs that she is not well.
Part of Sophia’s heart had narrowed again, this time within weeks. Her heart was working too hard so she wasn’t putting on weight. Our cardiologist said she had to admit us back to the hospital that day. She told us Sophia needed surgery and there wasn’t much time to wait. It wasn’t so urgent that she rushed her into the operating room that day, but it was urgent enough that they called other families to let them know their scheduled surgeries would be pushed back because they had a little baby who needed it sooner. I still think about those families all of the time. How anxious they must have felt about their child’s upcoming surgery on Monday and to hear that their surgery date had to be postponed. I think about how they pushed their own angst aside to graciously make room for us.
I cried. It was the kind of crying that happens when you put your head in your hands and the sound gets locked in your chest. I cried so hard that I thought I might throw up. Our doctor scooted her chair next to us and asked me to say out loud what I was afraid of. I said “I’m afraid that Sophia’s going to die.” She answered me right away, “we’re not going to let that happen, so I want you to put that out of your mind right now.” Everyone looks for a lifeline when they’re afraid—a small sliver of hope to hold on to when the world feels impossibly dark and heavy. That was mine.
In my next post, I’ll wrap up Sophia’s surgery story. I want you to know that it has a happy ending. But I also want you to know that it has a really hard, messy middle—one that brought us to our knees, both literally and figuratively. I wish I had some profound words about miracles and faith to share with you or at least, a really good reason for telling you this story, but I don’t. The truth is, the flood of bad news swept me to a place where I found myself feeling uncomfortably suspicious and paranoid about God’s ulterior motives. I really struggled (and sometimes still struggle) to believe that God had good plans in mind—for me, for Sophia, for our family. What I did learn was that God open-heartedly welcomes the wrestling and the wondering. I learned firsthand that when you come banging on heaven’s door demanding answers in the middle of the night, God will quietly open the door and invite you inside with your doubts and anger leading the way. At this point in Sophia’s story— the point in her story when she’s being prepped for her third open heart surgery—that’s all I can tell you—that God holds space for broken faith. He holds space for a faith that’s angry, that’s desperate, that’s non-existent. I know because at this point in the story, my faith is all of the above: broken, angry, desperate and non-existent.