I stopped writing after my last post sharing about Sophia’s second surgery and the day we found out that she needed a third intervention. I have shared openly about my emergency C-section, about finding out Sophia had a heart defect and then finding out that she had another heart defect. I shared about her first couple surgeries, and about the tug-of-war I had between the faith I knew I should have and the faith I knew I didn’t have. But then I stopped and quit this blog altogether, mostly because I didn’t know how to share the next part of the story. I’ve tried to write about other things, things I’ve learned since becoming a business owner or stories I have about being a mom, but no matter what words I try to put to paper, I find myself back here.
So I’m going to tell it. I hope to tell this story with all of the facts, but I suspect those facts will be tangled with feelings. And those feelings are big. And they are heavy. And most days, I’m not sure what to do with them or where to put them. For today, while I write this, I’ll let them sit next to me quietly and remind me that it all turned okay. But I’ll also have to make room for the reminder that Sophia isn’t the only one who wears scars from this day.
When I left you last time, we had just received news that Sophia would be having surgery again. This would be surgery number three and there isn’t much to share that’s remarkable here. Except that it went wrong. Very wrong. We didn’t know it then, but we know it now. Twelve hours. That’s how long Chad and I waited in the surgical waiting room for news. After 12 hours of surgery, we met with Sophia’s exhausted surgeon who offered little explanation other than telling us that it was done. When we were finally able to see Sophia that night, I knew she wasn’t okay. There were more machines. More cords. More people shuffling in and out of her room. Her chest was heaving heavily and it was heaving fast.
We asked our nurse why she looked worse than she had after her first two surgeries and she told us that the procedure was considerably more intense than the other two. Even so, they were able to take her breathing tube out after surgery which means the medical team was confident that she could breathe on their own.
During her first two surgeries and the time we spent in the hospital after, we only went home when we both had that safe feeling that she was stable and sleeping. This didn’t feel like that. This felt unsettling—like when you’re about to make the wrong choice, but you’re not sure what the right choice is. But we left anyway, largely because this was during the height of COVID so we weren’t allowed to move about the hospital, and we only lived 20 minutes away. When parents go home to “sleep” while their child is in the hospital, what it really means is they go home to brush their teeth and lie in bed staring into darkness, wondering if their prayers are just bouncing off the ceiling. What it means is that they lie next to their partner silently, afraid to ask them what they are thinking about in fear that their thoughts are even worse than theirs. What it means is that they hold the phone in their hands the entire night afraid to miss a call from an unfamiliar number that might mean there’s been a turn of events since leaving the hospital.
And that’s where this story goes next. Six a.m. A missed call. A frantic call back with multiple transfers to find the right person who called. The first piece of bad news: Sophia wasn’t breathing well on her own; she needed to be re-intubated. In hindsight, that “bad” news was such a small step backwards compared to what the rest of the day would hold. As Chad and I rushed to get to the hospital, another phone call. Another unfamiliar number. Another setback, this time with the word “complication” attached to it. It’s a word that no parent wants to hear when their child is in the hospital already struggling to breathe. It meant something went wrong.
It gets hard here. Chad and I don’t share with many people about what happens next, but I also know that it’s time to put painful words to the painful memories. I’m hoping if I can write it out, the words will help to heal the trauma and steer me back to the miracle of it all.
Sophia’s heart dissected during her third surgery. More specifically, her aorta dissected. An aortic dissection means that the aorta—the body’s main blood vessel—tears or splits. With Sophia’s aorta torn, blood was now traveling between two blood vessels: the original vessel and the one that had split off. It meant that the right vessel wasn’t receiving enough blood to send to the kidneys and her brain, and the other was filling with blood that had nowhere to go because it wasn’t supposed to be there. And it’s painful. So painful, that it feels like a heart attack. According to UChicagoMedicine, 40 percent of people who suffer from an aortic dissection die instantly, and the risk of death increases by 3-4 percent every hour the condition is left untreated.
If Sophia’s heart dissected during her surgery the day before and it was now 7 a.m. the next day—that math and those odds are as gut-wrenching for us now as they were then. The hard truth is that the majority of people who suffer an aortic dissection die before they make it to the emergency room. So there it is. Sophia was going to die if someone didn’t come up with a plan to repair her heart immediately. I keep re-typing that sentence, trying to wrap it in words that feel more gentle. More kind. Maybe more safe. But those words aren’t meant for this story. At least not yet.
The world-renowned heart surgeon and equally acclaimed cardiologists who had performed medical procedures all over the world told us they had never seen or heard of an aorta dissecting in a baby. Aortic dissections are most likely to occur in 60+ males with existing heart conditions. There were no case studies to reference or literature to pull out of the archives for a baby who was only two months old. The way forward? Unclear. Unknown. Unprecedented. How much time we had? Also unclear. Also unknown.
WIthout knowing exactly when Sophia suffered the dissection, no one knew the timeline we were up against. The team ultimately decided to take Sophia to the cardiac catheterization lab to place a stent that would hopefully bridge the vessel back together; most cath procedures are less invasive than open heart surgery and less intensive as patients aren’t put on bypass. I thought that minimally invasive meant that the risks were minimal, too. I was wrong. While we were signing the permission papers, the cath lab surgeon performing the procedure informed us that we were facing an extremely high-risk procedure.
Here’s where I realized that Chad and I are two very different people. I didn’t want to hear anymore. From anyone. Chad wanted to know what risks we should be worried about. The surgeon said that Sophia could either be paralyzed from the procedure or she could bleed out. Then Chad didn’t want to hear anymore. From anyone. And just like that, Chad and I were the same: two parents with hearts split in two because their two-month-old-baby had a heart that was split in two.
The surgeon looked at both of us and asked us to pray for him. This might sound like the part where God starts to make his way into this story, but that wasn’t what that was for me. Quite the opposite, really. I’ve spent my entire life praying to a God who I believe held every single one of my hopes, dreams and anxious thoughts in his hands, but I did not want the surgeon who was about to try to save my baby’s life to need God’s help. What I wanted was for him to feel equipped to do it on his own and while we were already on our knees desperately pleading with God, I wanted that to be extra. A bonus. A nice-to-have. What I know now and would find out later, is that God was making his way into this story long before he was invited by me.
When everyone had cleared out of the room, Chad and I were left with deafening silence and hearts wrapped tightly in fear. I will never forget looking at Chad and wondering what type of people we would become if we were the parents who lost a child. I wondered what would happen to our marriage if we were the parents who lost a child. I wondered if we would ever find our way back to our faith if our prayers went unanswered. I wondered if I would ever see God as kind and loving if he left us with the cruelest of outcomes. But I couldn’t blame God if he wanted her back. I wanted her back, too. And Chad and I both agreed—if God wanted her back, we had to give her back.
About 90 minutes into the procedure, our main cardiologist came to give us an update. The team was able to place a stent to hold the split vessels together, but there was a complication. There was that word again. She told us that the “situation was evolving” and that there were “a lot of people in the room trying to figure out what to do.” I know this to be true because we received a bill from every single one of them. When stents are placed, there is a metal sheath that’s pushed in through the growing and then it steers the stent into the place where it should stay. After the stent is secured, the sheath is slowly pulled back out. While the team was removing the sheath from Sophia, her tissues went into defense mode and clamped down causing it to get stuck in her leg. No one was sure when or how it was coming out. So they waited. We waited. Sophia’s little body waited until it felt safe again to release the tension.
Hours later, the surgeon sat us down in a room and drew pictures for us. He talked about how the stent placement was successful, but he also said we paid a price for that. When they were able to eventually remove the sheath from Sophia’s leg, it damaged the iliac artery in her right leg. Now there was a clot blocking blood flow to her leg. Hours ago, we were facing the harshest of realities that we might lose her. Now she wasn’t going to lose her life, but she could lose her leg.
We were in the hospital for two months while we watched doctors and nurses balance the treatment of her dissection and her leg. It became a delicate dance between needing her split aortic vessel to clot and close, and needing her leg artery to unclot and open up. Every day, every update threatened to obliterate the fragments of faith we had left. We were always bracing ourselves for the next turn of events, the next emergency, the next abnormal test result. Even worse yet, there were days when there weren’t updates. When there were no changes. No steps forward. Just agonizing stillness and sameness. Most days were like that. It was a painful season of stillness and surrender for us, but behind the scenes God was moving and working and healing—healing Sophia, but healing us, too.
Sophia didn’t die. She almost died. But she didn’t die. And most days, I’m not sure where to put that. I think I’d like to set that down, but I’m not sure where it’s supposed to stay. So I carry the grief, the gratitude and the guilt with me and let each one have its turn. Some days, I feel them all at once and some days, I feel the numbness that comes with the “almosts” and “could haves”. Numbness serves as a necessary armor for the anxiety from traumas past and fear of what the future might hold for us. And when numbness turns to paralyzing fear, I try to pull myself out of the memory and surrender the need for answers.
When our original heart surgeon (not our cath lab surgeon) came to check on us, he admitted that he was afraid and didn’t know what to do with Sophia’s heart. Between the cath lab surgeon asking us to pray for him and our heart surgeon admitting his expertise could only go so far, we can tell you that God is still in the business of answering desperate prayers. We’ve been told by surgeons, cardiologists and nurses that it’s a miracle Sophia is still alive, and I try to live in that as much as I can. But miracles are hard to understand and I still struggle to accept the absence of answers that come with miracles.
Sophia went on to have one more open heart surgery a few months later, making it her fifth procedure and fourth open heart surgery before she turned a year old. Though she is now a happy, hyper, healthy little girl, I still grieve the first year of her little life. I feel overwhelming waves of gratitude, but there are overwhelming waves of guilt too. Because I know there are stories that have ended differently. I know there are prayers out there that have gone unanswered. I don’t have words or answers for that, but I hold all of that in my heart, too. Since Sophia’s birth and surgeries, my heart has never been more broken, but it’s also never been more whole. It has never been heavier, but it’s never been more full. The “why” and the “how” can push me into a dark place at times, but today, we’re living in the miracle and holding on to hope that the best is yet to come.
