Initial Diagnosis

Regan and I (probably me more than him) always knew we wanted to have children. When we found out we were unexpectedly pregnant with Lincoln, we were scared but we were so excited to have our boy in our arms. Raising Lincoln for the first year of life was exhausting but so incredibly rewarding. That was about when Regan and I decided we were ready to expand our family. About a month later we found out Lincoln was going to be a big brother and we couldn't be more excited.

Being pregnant comes easy to me and I'm grateful for that so I never had any suspicions that anything was different about my second pregnancy. I switched doctors around 17 weeks, so I was going to be going to a new office for my 20 week anatomy scan (a complete routine part of pregnancy) That's when everything changed (of course I was alone since Regan had to stay home with Lincoln). My doctor walked in and told me she saw some things on the ultrasound that she wanted to discuss and I knew immediately something was wrong.

She started showing me the different things she saw: an echogenic bowel (lit up on the ultrasound as opposed to a dark image), calcifications on his brain, his brain was in the 3rd percentile, calcifications near his spleen and kidney, his heart was in the 97th percentile, and he was measuring in the 7th percentile so he was definitely on the small side with his heart and brain not matching the rest of his body. We then started to discuss what all that meant. There was either a genetic abnormality that was not one of the 4 that I was already screened for, so something less common, or there was an infection. She explained the 3 infections she wanted to look into. My next question: where do we go from here?

She wanted to do a blood test that day and screen for three different viruses to see if they were in my system: cytomegalovirus, parvovirus, and toxoplasmosis. Of course I called my mom right after the appt in tears and she headed out of town to come give me some much needed moral support. 

Within a week, my doctor called me and let me know that the parvovirus and toxoplasmosis both came back negative, but the CMV came back positive meaning I had recently recovered from the virus. So that told us it was likely either CMV, or genetic. The only way to know for sure what was going on in utero was by having her do an amniocentesis. I was leery but I was also confident in that I needed to know what was going on. So we scheduled my amnio. I looked online at what the procedure was going to be like (highly don't recommend looking into it, or having one done).

The day came for us to go in. I was nervous, naturally, but ready to have some answers. It was just as awful as I imagined it to be, but luckily I was able to squeeze Regan's hand throughout the procedure as my doctor collected three vials of amniotic fluid to send off. We were testing him for the same three viruses I was tested for, as well as getting a full genetic profile.

Then we waited.

And waited.

We got a negative result for toxoplasmosis and parvovirus. But were still waiting on the genetic screening and cytomegalovirus. So we waited more.

And let me just tell you that when doctors tell you there's something wrong with your baby but you don't have answers, it's excruciating. Never in my life have I had more anxiety than the last 6 months of our life through all the unknowns. So we continued to wait. We finally got our genetic screen back and it was completely normal, which led us to one last thing: CMV.

I went back to see my doctor and we discussed all my results...all except the CMV as we were still waiting on those results. And we would be waiting forever for those results because the lab never even ran the test. My doctor was confident that it was CMV, but I really needed that confirmation. How do we get that confirmation? Another amniocentesis. And I had to know. So that's what we did. And the second time was even worse than the first. My doctor had a harder time getting the fluid this time, but we were hopeful she got enough to run the one test this time. A few days later we finally got our answer. He was positive for CMV. 

This answer only led to more questions.

My doctor wanted us to meet with the infectious disease doctor so he could discuss the virus specifically with us and what all this meant for Beckett. So that's just what we did.

He started off by telling us just how common this virus is, yet I had never even heard of it. It's the leading cause of deafness in children in the US.

Here's the thing about CMV: when you're a two year old in daycare and catch it, you're likely going to have a runny nose, maybe a cough. When you're a pregnant female specifically in her first trimester of pregnancy and catch it? It will still be a runny nose, maybe a cough. And on top of that, it's going to go through your umbilical cord and effect the development of your baby for the remainder of your pregnancy. And the effects can be devastating...like what we are facing.

He laid out the treatment plan of what we were going to do once Beckett was born based on what had been seen in my ultrasounds. He shared with us that there is a medicine that we would be putting Beckett on once he was born to try and repair any damage that was done to his hearing in utero since that is the main concern with congenital CMV. He also informed us Beckett would be going to NICU immediately once he was born for what he estimated to be 3-5 days depending on how he was when he was born, as my doctor didn't even expect me to make it to full term. In the NICU, they were going to running tests on his entire body to see just how extensive the damage was from CMV.

Now was time to sit on all this new information, go to my checkups, and be grateful for everyday he is able to grow in my belly. I was being monitored every week to check on his growth and make sure he was moving and thriving. It was difficult driving the 40 minutes each way twice a week, but it was worth it to make sure he was doing well.

So we continued to pray for his health, and wait for him to arrive.