I’ve tried to write this post for a few months now. I’ve tried to sort through pieces and feelings and doctors’ notes and medications and more feelings and more pieces. I keep coming back to it, picking it up because I know that I need to and setting it back down because the story doesn’t feel safe to me yet. I’ve gone back and forth between writing a “praise the Lord for He is good” post and a super vulnerable, honest account of where I’m at these days. I hope to settle somewhere in between with the words I’m writing now.
Months ago, we shared that Baby Sophia had to undergo her third open heart surgery which was followed by an emergency procedure no more than 24 hours later. It was during this emergency procedure when Sophia’s life was saved for the fourth time. It’s the most important part of this story, but before we get there, I’ve been reluctantly making my way back to the beginning because as any good therapist would tell you, when you’re in the healing part of your journey, you don’t get to skip the parts that are hard to talk about.
It was July 15th and Target had a sale on their day-old bakery items. I know this because I was staring at apple fritters when I felt my first contraction. The details between the fritters and the hospital aren’t important, but you should know—contractions hurt and yesterday’s apple fritters are worth the dollar discount when you’re 39 weeks and two days pregnant. The things I said to Chad during labor aren’t important, but you should also know—epidurals save marriages.
By the time we had pulled into the hospital parking lot, I had said more four-letter words than I’ve ever said in my life. One hour and one epidural later, the midwife and the nurse told me that it was time to push. So I pushed. But it wasn’t enough, because Sophia didn’t come. I switched positions and I pushed harder. But it wasn’t enough because Sophia didn’t come. When a doctor came in and took over for my midwife, I didn’t know why. I only knew Sophia didn’t come. And when more people rushed into the room and told me I needed to have an emergency C-section, I didn’t know why. I only knew Sophia wasn’t coming.
There wasn’t time to administer another epidural, so an oxygen mask was placed over my mouth, and that’s where my fight ended and Sophia’s fight began. I was unconscious when she was born and Sophia wasn’t breathing when she was born, and that was hard for both of us.
The first time I saw Sophia was through a picture on Chad’s phone. I went into surgery with a baby inside of me. I woke up with no baby inside my stomach and no baby in my arms. But there isn’t time to unpack all of the feelings that come with waking up to find out you were unconscious and without your husband during the birth of your first baby.
I had never seen Chad cry until this day. And what I didn’t know then, but I know now, I would see him cry many more times in the next few months. And I didn’t know then, but I know now, I would also cry again many more times in the next few months. But I’m getting ahead of myself.
Our doctor later told us that every time I pushed during delivery, Sophia’s heart rate decelerated. At the time, they thought I was having a placenta abruption, a delivery complication that happens when the placenta detaches from the uterus causing extreme bleeding in the mother and the baby’s oxygen supply to be cut off. The emergency C-section was supposed to save us both. And maybe it did save us both, but as it would turn out, my placenta didn’t cause our delivery complications.
When I finally met Sophia for the first time, I’d like to tell you that I felt whole. That’s what I had imagined for myself. That’s what I had imagined for all of us—wholeness and happiness, but all I felt was tired and numb. When I held our little six-pound baby, I felt like I had been cut open and put back together again. I felt guilty that I just wanted to go back to sleep. So we both drifted in and out of sleep over the next few hours, both of us too weary to bond just yet.
Have you ever gone through something so difficult in your life and just when you think the worst is behind you, you realize that what you thought was the end was actually just the beginning? It’s during these moments you try to convince yourself that God won’t give you more than you can handle, but God never actually says that in the Bible. What He says is that He won’t give you more than He can handle. I know this to be true because over the next several months, God allowed far more than what we could handle.
Less than 48 hours later, a doctor sat down near the end of my hospital bed and said that Sophia failed her newborn screening test. I didn’t know what that meant then and I’m not sure I know what that means now. Even with heavy words like “genetic tests” and “heart defect”, I never imagined that this would be the first of many, many hard and heavy conversations where I didn’t understand all of the words, but I understood enough of them to know Sophia was not okay.
They took Sophia back to the NICU to prepare her for immediate transport to Masonic Children’s Hospital in Minneapolis. Meanwhile, a lactation consultant came to teach me all about breastfeeding and pumping and letdowns and colostrom; she told me to call her “Lactation Lynn” and that should tell you everything you need to know about that whole experience. Let me be the first to say that I am so appreciative of the work that lactation nurses do. But learning how to breastfeed when you’re on morphine and peeing through a catheter and just found out your baby’s heart isn’t working right just isn’t what I had signed up for when I checked the “interested in a breastfeeding consult” box.
It’s important to note that Chad had an entirely different experience than I did and someday I hope that he shares his heart with you, but the story’s not safe for him yet either. He shouldered the bad news that kept on coming and he did it alone. He spent hours in the waiting room alone, unsure whether he should be afraid for me or afraid for Sophia. Neither of us knew why routine labor turned urgent so fast and neither of us knew that we were going to find ourselves in this place where routine turned urgent many, many times in the weeks ahead. While Sophia prepared for transportation to Minneapolis, Chad went back and forth checking on her before coming back to check on me. And while the news that Sophia needed more help was alarming for both of us, the blow for me was at least softened by morphine and painkillers. Chad didn’t have the luxury of checking out.
When the ambulance was ready to take Sophia, I saw Chad cry again for the second time. The doctors recommended that I stay in the hospital one more night, but they knew better than to talk us into it. Since I had had a major surgery, the discharge process took time and Sophia had to leave without us.
She was transferred to the University of Minnesota Masonic Children’s Hospital where she was admitted into the NICU for testing and monitoring—a place where I know so many parents have had to face harsh realities and start the grieving process that comes with realizing that “normal” isn’t a part of the plan for your family. It was in this room—a room filled with four other babies fighting for their own lives—where we faced our own harsh reality and stepped into one of the darkest seasons of our lives. It’s where I awkwardly learned to pump behind a curtain. It’s where Chad stood for hours while I sat in the only chair recovering from surgery. It’s where we stood silently behind a team of nurses and doctors while they cared for the baby we were supposed to be taking care of. It’s where we learned that Sophia was going to have open heart surgery just days after she was born.
Imaging tests showed that Sophia had an extremely rare heart defect called an anomalous origin of the right pulmonary artery. It means that her right pulmonary artery, the vessel that carries blood to the right lung, wasn’t where it was supposed to be. It needed to be detached and reattached in the right place for her heart and lung to function. Her doctors also suspected that she had a genetic disorder called Chromosome 22 Deletion Syndrome, a syndrome that has been linked to abnormal right pulmonary arteries.
There’s more to say, so much more to share, and even more to work through. When I started writing this post, I had hoped I was telling you a story with a difficult beginning and an even harder in-between, but there was a hard-fought outcome I was really looking forward to sharing. The truth is when I started this post months ago, it felt safe to share this story because I thought we were nearing the end of it. What we’re finding is that we’re still somewhere in the messy middle and it’s really hard for me to share from a place that feels like a little too much and a lot too hard. But nevertheless, I am starting to write the next part of this story—the story about Sophia’s first and second surgery. It’s in these words where I slowly start the process of surrendering to the fact that I am not the author of this story.
In the meantime, if you too have been slammed into a reality that you weren’t expecting with your baby—whether it’s a congenital heart defect or not—I would love to hear from you and pray for you.
XXX,
Jenna