July 14, 2016. 20 Weeks, 4 days.
Yesterday, we were excited. We had been waiting for this day for weeks: the in-depth ultrasound where they could tell us if we were having a boy or a girl. Right off the bat we found out – it’s a boy!
After about 10 minutes, the chatty sonographer got pretty quiet. That’s when I started to suspect something was up. The perinatologist was called in to take a look. Having had a baby before, I knew this was not normal.
Ryan and I were ushered to a little conference room where the perinatologist delivered the news: things didn’t look right. There were three concerns:
- The baby was small, measuring at about 9 days behind where he should be.
- The lateral ventricles in the brain were measuring larger than they should be.
- And they couldn’t find the cavum septum pellucidum (CSP) or corpus callosum in his brain.
The perinatologist and genetic counselor recommended that we have an amniocentesis done to determine whether there was a genetic issue. It takes 2 weeks for results from an amnio to come back, so they booked one for me the next day (today). It’s important to move quickly, they said, because if this is something bad, we only have until 24 weeks to terminate the pregnancy.
Our 45 minute ultrasound appointment that was supposed to be exciting turned into nearly 5 hours at the doctor and conversations about “worst case scenarios” and terminating the pregnancy. What. The. Heck.
Today was my last day of work at ACS. I tried to be as present as I could, but it was hard knowing that I had to leave early to have the amnio done. I was nervous about the amnio, but now that it’s over with, I realize the anxiety of waiting 2 weeks to learn anything is far greater.
July 28, 2016. 22 Weeks, 4 days.
We got the results back from the amnio. Everything looked normal which is great – it means no genetic issue.
I had a fetal MRI this morning (side note: lying for almost an hour and a half in an MRI machine, unable to re-adjust is really uncomfortable). They got some very good images which told us the following:
- The CSP and corpus callosum are present. More great news.
- He is still running 9-10 days smaller than he should be, which is consistent with what they saw 2 weeks ago during the ultrasound. Maybe he’s just a small baby? Overall, the doctors aren’t too concerned about this.
- The lateral ventricles are still dilated and larger than they should be. Right now, they believe the diagnosis is aqueductal stenosis – meaning that the passage that lets fluid out of the lateral ventricles is too narrow and it can’t get out, thus making them dilated
We are meeting with a pediatric neurologist next week who will walk us through what this means for him after delivery. As we understand it, it’s hard to know until he’s further along how mild or severe the effects of this will be for him. It’s likely that after he’s born, he will need to have brain surgery to have shunts put in to relieve the pressure/fluid in the lateral ventricles.
As stressful as it is to think about a newborn having surgery, we’ve had a great team of doctors so far and I have a lot of confidence in them. We’re feeling relieved that the amnio came back normal and that he has all structures in his brain are accounted for. We love this boy and continue to pray for his health and wellbeing.
We have an amazing God who has a plan and is holding you all in His arms throughout everything. Please try to leave it all in His hands and rest in Him. He loves you. I am praying with you.
It’s difficult to know what to say. You both have strong faith and kno what God has a plan. All good thoughts and prayers are coming to you from E Tennessee. I love you!
We are praying for your family and your precious new son. God is watching over you.
Love and prayers for all of you!
My prayers are with you and God is in control .