The 20 Week Diagnosis I Never Saw Coming

The blog is making another appearance which can only mean one thing… something major is going on with me! I’ve said this before, but I don’t consider myself a “writer.” However, for some reason, this tends to be where I feel like I can get it all out or maybe portray the full picture of what I’m feeling.

I’ve always had this vision of what becoming a mother would look like. I’m not sure if this “road” I’ve always expected is because it’s what you see in the movies, it’s what you see around you, or if it’s because roads that don’t look exactly like it aren’t talked about that much. But it always seemed like it would be this routine scenario where I’d get married, get pregnant when we decided we were ready, have a beautiful healthy baby, and then more babies! I’d have the number of children we felt like was right for our family, they would all be beautiful and healthy, there would probably have a 2 year gap between them, and that would be that. I was completely naïve to how this journey could and WOULD play out for me.

As I have written about previously, I suffered a miscarriage and D&C procedure in October at 11 weeks pregnant. That was devastating to say the least. The heartbreak from that experience I will never be able to be put into words. By God’s grace, after a (very) long physical healing process, we conceived again and found out we were pregnant in late January. Sadly, we had a hard week at our first ultrasound due to the tech not seeing an embryo in the sac. We thought we were about to go through another round of pain, but after 7 days of mourning, prayer, and hope, another ultrasound confirmed a tiny little sac, a tiny little embryo, and a mighty heartbeat! We were going to be parents again, and even though there was (never ending) anxiety surrounding this pregnancy, all seemed well in the world.

This was at 16 weeks!

Cut to last Wednesday, May 18, 2022. It was the day of our 20 week anatomy ultrasound – the big one! You know, the one where you walk in and expect to get to see every little part of your baby, the 4 heart chambers pumping, maybe see a sucking of the thumb, and walk out all giddy? Unfortunately, we got some news that we never saw coming and are still trying to process moving forward. After the ultrasound was over, we went into a room to see our OBGYN. We were smiling at our ultrasound photos and soaking it all in until the doctor walked in, and I could immediately see it all over his face. He sat down and said, “There’s something we need to talk about.” Ever heard of Gastroschisis? Yeah, probably not. I hadn’t either. In the next 30 seconds we would learn that our baby girl’s bowels did not develop properly in the early stages of pregnancy and she would be born with her intestines outside of her body. Ummm what?! I didn’t even know this was possible! And now it’s happening to MY baby? My rainbow, miracle baby? A birth defect that occurs about once in every 3,500 babies. It didn’t seem real…

The following 10 minutes seemed like a blur. A lot of information was thrown at us, a lot of confusion was taking place, and a lot of questions were asked. What did this mean? What did this look like? I would need to starting seeing a high risk doctor (which I did 2 days later) and switch care to Vanderbilt. I would also deliver at Vanderbilt. It would probably be an early (early) delivery. Potential for a C-section. My baby being covered with a bag after she’s delivered. Taken to the NICU potentially immediately. My tiny little brand new human undergoing surgery in the first hours of her life. Potential damage to her intestine. An average of 40 days in the NICU. Her not being able to eat for a while and needing an IV to survive. Me going home empty-handed, without my baby. OKAY. It is now Monday night and have I quite processed all of this? NOPE.

To say I am terrified is an understatement. We have no idea how these next few months will go. I’m already over halfway there, but now it’s even closer. And we have no idea what the delivery will look like. I will start being seen much more frequently, and in the coming weeks, I will have an ultrasound weekly, and maybe even twice a week, to monitor the Gastroschisis. And once the doctors think she needs to come out for her safety, it’ll be time. Could that be 29 weeks? Maybe. Could it be 37 weeks? Potentially, ideally. We just don’t know. And we won’t know the severity of it until she’s delivered. And to say that this terrifies me would be cutting this emotion and fear short.

But through all of this fear, and heartbreak, and devastation, and sadness from a journey that has been painful, surprising, emotional, unexpected, and difficult, there is one line someone said to me since learning of the diagnosis that I can’t shake. “God isn’t surprised.” Even though I was surprised, He wasn’t. And I believe that to be true. He knew our little one would have this diagnosis. He knew before we went into our anatomy scan, excited, that we would leave devastated and fearful. He knew that the road to come would be challenging and hard and scary. And He will give us the tools to get through it as well. This has given me what comfort I have been able to have through this diagnosis that I never saw coming. He is in control, he knows how the delivery will happen, when it will happen, what the severity will be, and what the after-care will be. He already knows. And for some reason that is just so comforting to me. I don’t have to know, because He knows. And he wouldn’t give us more than we can handle.

The coming weeks and months will be a roller coaster. I ask that you lift us and our little one up in prayer! Please pray for the doctors and their wisdom. Please pray for our little girl to hold on in there as long as she possibly can. And please pray for our hearts as we prepare to not have our first child with us for the first month (give or take) of her life. I do believe God can work miracles. And I also believe that His plan will pan out exactly how He wants it to.

If you’ve made it this far, thanks for reading I guess? I needed to write it all down. There’s so much going on in my head these days that I needed to write down the story, what’s happening, and where we are at moving forward. If you know of anyone who has been through a Gastroschisis diagnosis, I would love to talk to them. And I know one day in the future our story and experience with this birth defect will comfort someone else. That’s what it’s all about, right?