Category: How We Got Here

What would it take for you to stand still in the face of a storm? I talked about how this verse from Exodus kept coming up repeatedly in the months leading up to our diagnosis. We have a small group of families from our church that gathers on Sunday evenings to have a meal together and discuss the message from church that morning. One of the questions for our group discussion the Sunday before our diagnosis was “How does reading the Bible contribute to maintaining hope during difficult times? How have you seen this play out in your life? APPLY IT: What Bible verses or passages have given you hope during challenging times in your life?” It seems so surreal to me that just 5 days prior to getting this diagnosis we were having this conversation. When I say that God had been preparing us for this moment, I really mean it, I can go back and find so many tangible examples like this from the months before we found out about our baby. I brought up Exodus 14:14 to the group and talked about how I think that to be able to stand still in the face of oncoming turmoil, you need to have already laid the foundations. You have to be reading your Bible, and know God’s word, and surround yourself with people who are going to support you and bring you back to God when you feel lost. I talked about how we had not faced anything truly challenging since we had started to grow in our faith but how I could see that having these spiritual disciplines was preparing us for when trouble might come our way. One of the dad’s in our group, a good friend of ours, shared a story that he said he had heard about a couple that was looking to hire a farm hand and after several interviews they asked a candidate why they should hire him and he said, “I can sleep through a storm,” the couple didn’t understand what that meant but they ended up hiring him. When the first major storm came, they went running out of their house to “batten down the hatches” and what they found was that everything was already done and their farm hand was sound asleep. He was prepared for the storm, so he could sleep through it.  

The morning after our visit to Riley, I woke up feeling overwhelmed. There was not a clear path forward. After our initial anatomy scan, a friend from church had sent me the phone number of a mom whose son had also had a congenital diaphragmatic hernia. Her name was Joy, and even though I had asked for her contact info, I knew I had not been ready to have that conversation yet. I needed to know more. I didn’t want to talk to someone who had a severe case and get totally freaked out just to find out our son’s condition was minor, and I definitely did not want to have a conversation if it was going to be the other way around. So now that we were somewhat aware of what we were facing, I felt ready and I sent Joy a text. She called me immediately. We talked to Joy, a complete stranger, for 52 minutes that day. She told us about how doctors had given her worse odds than we had been given, recommended she terminated, but she sought a second opinion and that is when she found Dr. David Kays at the John’s Hopkins All Children’s Hospital in St. Petersburg, Florida. He was running a first of its kind center for treating babies with congenital diaphragmatic hernias (CDH), and he had an over 95% survival to discharge rate. She told us all about her son, his diagnosis, treatment, discharge, and life since. She sent me a bunch of pictures and gave us a lot of information and told us she was available to us any time we needed to talk, and I could tell she meant it. We got off the phone with her, and I remember I looked at my husband and said, “well that’s great but it’s not like we can just go to Florida,” we both sat in silence for a minute or two until I said, “CAN we just go to Florida?” He said, “It sounds like we might have to.” 

Feeling overwhelmed by the path ahead of me, I decided to just make one phone call. I would call Riley and ask them to give us a referral to both Cincinnati Children’s Hospital and John’s Hopkins All Children’s Hospital and have our information sent there. I had decided if I completed just this one task, it would be better than nothing. So, I did it, and I thought that was enough for the day. I had no idea the ball that I had rolled down the hill. By the afternoon I had heard from both hospitals, they had received all our information from Riley, and we had calls scheduled to discuss and schedule the next steps. I had sent a brief synopsis of what we had found out at Riley to my Bible study group and one of the women responded that she was a NICU nurse and made some recommendations for getting things lined up with our insurance. I had been able to take care of all of that already. And my husband had already spoken to his manager and got the unofficial ok that he could work from wherever he needed to work from, for however long he needed to. 

I sat there after I got off the phone with my insurance, I remember it was 503pm, and I started thinking about everything I had accomplished that day when all I had set out to do was make one phone call. It was then that I remembered what one of the women from my Bible study had said after I had sent the news about the baby the day before. “Praying that God parts the sea you’re facing. That you feel loved and held through this. And that He sustains you moment by moment.”  I scrolled back and read it repeatedly and I just started crying. I have never in my life felt like God had spoken to me but in that moment, I knew without a doubt He had, or at least He had tried to. All week I had been repeating this verse to myself, reminding myself that the Lord would fight for me, that I had laid the foundations, and that if I put my trust in Him, He would fight for me. But when the truly scary news came, I started to panic, and God tried to reach me in that moment. He saw my fear, and He tried to remind me through her prayer that He was fighting for me, that He would part the seas for me, and boy did He.  

My brain caught up to me around 3am and suddenly I found myself awake and sobbing in bed. I got up hoping I wouldn’t disturb my husband, probably the wrong choice. I fell to my knees on the living room floor and I prayed. The tears would not stop. I prayed for strength, I prayed for peace, and I prayed for clarity on our next steps. I asked God why, but not in the usual why is this happening to me. I wanted to understand what He was asking of us, how I could help to make good of the struggle He had placed in my path, I feared I was not strong enough to do what He was asking me. I opened my Bible to a verse that I had been repeating to myself all week.  

In late January during my Bible study we were all asked to share a verse, I cannot remember the exact context or what the verse was supposed to mean to us but one of the ladies shared a verse from Exodus. As the Israelites stood with the sea to their backs and the Egyptians fast approaching, they started to panic, and Moses told them, “The Lord will fight for you, you need only to be still” (Exodus 14:14). The verse struck me in that moment and came to me again many times over the next month. God was speaking to me in those moments, preparing me for what was to come, but I did not know it yet.  

I read the passage out loud and I started to repeat the words “you are not welcome here, you are not welcome in my home, you are not welcome in my family.” I was talking to the devil. That probably sounds extreme to a lot of people, but just the week prior in my mom’s group we talked about how the devil is strategic, he will come for the thing that is most likely to break you down. We were all asked to answer the question “If you were Satan, how would you take you out?” My answer: “I think mine would be my kids. I’ve gotten better in the last year or so at accepting that they are a gift that God has given me to take care of for however long He has planned but they are ultimately His. It has helped with my anxiety a lot, but I often wonder if my faith could actually withstand something happening to one of them.” That’s an exact text I sent just 13 days before our anatomy scan. To be clear, I am not saying that this diagnosis came from the devil, but the fear I felt that night, the fear that was starting to overtake my thoughts and make me wonder if I was strong enough to handle this; that was certainly from him. So, I told him out loud that he was not welcome in my home, and I said it repeatedly until I stopped crying, until peace came over me, and I could take a deep breath. 

My sister had sent me a song earlier that day that I had not listened to yet and for some reason I felt compelled to listen to it in that moment. I won’t say it was the wrong choice, but it was certainly a choice. The tears came back, music has the capacity to move me in a way that not much else can, but the tears felt different this time. Sadness, grieving, but not fear. “We’re in for nasty weather, and I’ll ride it out with you.” I held my belly, I rocked, and I listened to these words. I listened to it twice, I said a prayer, and I went back to bed. I knew we had a rough road ahead of us, but we could do it. We could face the storm, because I knew that in my stillness the Lord was fighting for me.  

It was early on a Friday morning in March. We dropped our kids off with my mom so we could both be there for our anatomy scan. I had a lingering fear that I could not quite explain. I had told a few friends that I was nervous about the anatomy scan, declined my mom’s offer to go to the appointment with me instead of my husband. For reasons I didn’t know at the time, I wanted him there with me even though this was our third baby, par for the course, routine, just another ultrasound. A mother’s intuition they call it, I believe that intuition comes from God. He had been preparing me for this for months, maybe years, maybe my whole life.  

I look back on that morning, and I see a different woman. I can only imagine how much I won’t recognize her by the end of the year. Our OB’s office is down the hall from a medical spa, I told my husband I was going to schedule massages after the rest of my OB appointments, little did I know I would only be back in that office a few more times (no, I did not schedule any massages, but I really should have). After we had the ultrasound, we were in the waiting room and we talked about our plan to surprise our family with the news that we were having a little boy. We had accidentally found out the gender weeks before, again that nagging fear that something was wrong was eating at me long before this day. We got the results of our genetic screening late on a Friday evening and I knew I could not wait until Monday to hear from the doctor, so I looked and even though we had opted not to have the gender testing done it was right there on the report. As I said, this is my third child, we have had the genetic testing done three times, and not one time have I felt the need to look at those results. My daughters had sat unopened in my lab results for 4 years. I would’ve been 10 weeks at the time, exactly when my son’s diaphragm should’ve been forming as a barrier between his chest and his stomach. I just knew something was not right. I told myself that these were intrusive thoughts, rooted in our previous struggles to conceive. We didn’t think having a baby on accident was possible for us, but it had happened, without any effort or tests or scheduling, and I thought I was just battling with my brain that it couldn’t be this easy, we couldn’t just get pregnant on accident and have a healthy baby. There is, of course, a part of me that wishes I was wrong, wishes I could tell you that it was all in my head, that we conceived a baby naturally, with zero effort, and he is going to be born naturally on or around his due date and we would get to snuggle and struggle through breastfeeding and sleep deprivation, but that was not our path. 

We were called back to see the doctor after a short wait and when she came in and I saw the look on her face I think I almost felt a sense of relief. I could see that she was going to tell us something was wrong and I felt like at least I could finally face it, I could finally know for sure what I had been feeling for months. She told us that it looked like some of baby’s stomach was in his chest, I actually can’t remember if she used the words diaphragmatic hernia. She had very little information for us and told us she would not be able to answer very many, if any, of our questions. We would have to wait until we could see the maternal-fetal medicine doctor at Riley’s Children’s Hospital, and they would be able to tell us more. I did not realize how serious this would all be at the time. I thought the baby would just need a surgery after he was born to repair his diaphragm and move his stomach back into his abdomen, again I see a different woman sitting in that room than the one writing this today.   

We snuggled our other babies hard that weekend, grateful is an understatement. I saw them in a whole new light, and I know my husband did too. How ignorant had we been to think it was just normal to bring two perfectly healthy babies into this world. It is not, it is an absolute miracle, and I am so incredibly grateful that I see that now. We got the call on Monday to schedule our visit to Riley, they were able to see us that week, so we cleared our schedule for Thursday morning. Our appointment was early and we live in the country. I think I had asked my mom to be there by 615 and it was early March so still very dark at that hour. She called me in an absolute panic because she had missed her turn and it was too dark for her to see where she was and her phone was not doing what it was supposed to. My husband walked into the kitchen while I was on the phone with her and asked if I knew what time it was and if I was ready to go. I felt like everyone around me was panicking, and I was for once the calm one. If you have ever been around me when it is time to leave and things are not going the way I had planned, you know that this is beyond not normal for me. In fact, I would say one of the main reasons I am in therapy for anxiety is because kids make it impossible to get out of the house on time and in an orderly fashion and it makes me insane. But on this morning, amidst the chaos, I had peace that I know was not my own.  

We made it to our appointment on time. The echocardiogram was first, and the cardiologist reported that outside of his heart being shifted to the right, it looked anatomically normal. We took a deep breath, some good news. The extensive ultrasound was next. A very different experience than a normal ultrasound, the tech was talking us through everything she saw and explaining things to us as she went. If you’ve ever had an ultrasound, they normally won’t tell you much of anything, deferring to the doctor for any interpretation of what they are seeing, I am so grateful that is not how this went. The doctor came in shortly after the ultrasound was finished and I look back on that moment and know there is a before and there is an after, and our world will never be the same from that moment on. They do a measurement called the lung-to-head ratio, where they measure the lungs and compare it to the measurement of the baby’s head and then they use that ratio to compare our baby to the norm. A diaphragmatic hernia is considered severe when the lung-to-head ratio is less than 30% of the norm, our baby’s was about 23%. She gave our baby boy about a 50% chance of survival. I remember thinking that I should be crying, having some type of reaction, but I just stared at her. I wanted to say something, do something, feel something-but I couldn’t, my mind was blank. This is not what I was expecting. She talked briefly about some options for intervention that would require us to go to another hospital, I asked her to send us some information on that option and then we were moved to a different room to talk with a genetic counselor. And after that we were done, sent off into the world with this information and absolutely no idea what to do with it. If you have ever gotten particularly bad news, you probably know the feeling of walking around in the normal world with it. Like everything and everyone around you is moving at a normal pace but things are moving slower for you, and you just can’t seem to find your footing but no one around you knows.  That’s how I would describe the rest of that day, the world was moving a little bit faster than my brain could handle, so we stayed home in our bubble where we could slow down and have time to process.