4/11/20 Update on Shecklet #5

I was going to write one long post and include everything at once, but what I was writing was turning into a very long post, so I figured it was better to write as things develop.

We had our 20 week ultrasound yesterday. Due to COVID-19, Jake wasn’t able to accompany me to the appointment. I understand the need for caution, but it sucked.

The first glimpse of our little one was all I needed to know that things were not going in a positive direction. The internet is full of wonderful and horrible things all at the same time, and I’ve done enough research to know that what I was looking at on the screen in front of me was a lot of fluid built up where I knew it shouldn’t be. The cystic hygroma behind baby’s head/neck was large (I was shocked when I saw the actual size in my visit notes online) and there was substantial fluid buildup in his/her belly. From there on out, I let the tears flow as the ultrasound technician looked at the rest of the baby – lungs, leg & arm bones, kidneys, stomach, head/brain, and a detailed look at the heart (fetal echo.) She attempted to determine the gender of our baby, but our little one didn’t want to cooperate. Of the two things I was hoping we’d see – lower fluid amounts and gender – I saw neither. I’m pretty disappointed.

Once the ultrasound was complete, the technician went to speak with the MFM doctor and pediatric cardiologist to share what she found. After I don’t know how many minutes sitting alone in the room, the MFM doctor came in and introduced himself. I called Jake and put him on speakerphone so he could hear what the doctor had to say.

I already knew the news was not going to be positive, and the doctor confirmed that (in the kindest way he could.) While he didn’t eliminate all hope for our baby, after reading the visit notes today, it seems quite likely that we won’t get to meet our little one this side of heaven. It breaks my heart to read the words “likely fetal demise” in my visit notes. It hurts so much to know there is nothing that we can do to change the outcome of our child’s life. It was so sad to share this update with our kids when we got home yesterday afternoon.

Our baby has “severe hydrops fetalis” (non-immune type.) The fluid building up in our sweet baby’s abdomen is putting stress on other organs such as the heart, lungs, and kidneys. Because we have chosen to not have an amniocentesis, we are choosing to not determine whether the cause of all that’s going on is a genetic abnormality. However, all signs are pointing in that direction since the heart looks “ok” considering everything else that is going on. Going forward, I’m supposed to continue with weekly heartbeat checks for baby and blood pressure checks for me. There’s something called “mirror syndrome” that can occur in pregnant moms whose babies have hydrops.

I told a couple of friends (via text) yesterday that I don’t even know what to pray for right now, so I just keep repeating, “Jesus, I trust in you.” Because really, that’s the only thing that I can bring myself to do. That, and to offer up my suffering for my friend and her family whose son was tragically killed on 3/20/2020.

My head knows God has a plan, a reason, for all of this. But my heart is really struggling to understand.

We weren’t able to get a good updated profile picture of Shecklet #5, but we did get some other photos of our little fighter!