Friday, June 19, 2015

The beginning of his story - Part 2

(Part 1 is here)

Along the way to the midwife's I was able to gain some control of my emotions so that I was able to go through most of the appointment without crying.

As we sat there she went through the findings of the ultra sound radiologist. She said that our little one had possible heart defects, large bilateral choroid plexus cysts (two large cysts in the brain), a club food (the left foot's sole is facing the other foot), micrognathia (small chin), and ventriculomegaly (dilated ventricles in the brain). They also found that the baby was smaller than it should be, being approximately 9 ounces instead of 12-14 ounces. The recommended due date for that ultra sound was November 2nd, the previous ultra sound had said October 26th and my original dating (which I believe to be the closest to accurate) was October 18th. She said that most of these signs (if not all) indicate a possibility of Trisomy 18 (Edward Syndrome). I believe that she explained that with Trisomy 18 there is a high risk of still birth and infant death though there are a few that make it past that.

I am familiar with Trisomy 21 (Down Syndrome) because of a biological and an adopted sister with it. I figured that it would be similar and wasn't as afraid.

We showed her the ultrasound pictures and she asked how we were doing. I tried not to cry as I told her about my anxiety around the ultrasound and how I was feeling. She asked if we wanted to hear the heartbeat and we did. The heartbeat was nice and strong and easy to find.

She told us that she was going to refer us to a place that specializes in fetal abnormalities and that they would probably call us to schedule an appointment. She is a Christian as well and encouraged us to put our trust in God and to rest in the knowledge that He has a plan.

As we left she told me that it was okay to cry and that crying was good and she hugged me goodby.

We drove home trying to absorb the news. Over the evening we began calling our family members and closest friends to let them know what was going on so that they could pray for us. I cried through most of the calls but each one got a little easier. I eventually sat down to my piano to play. My hymn book was open so I began playing most of the ones I have marked and they were ones about God's peace, trusting in Him and casting our cares on Him. As I played them I began to cry a mixture of my pain and the joy that the Lord is here and has a plan and will give us His peace. I began to feel peace, and began to feel okay, that God is in control and that this will turn out for our good and His glory.

Jon and I spent some time talking before going to bed for the night. We had both begun to feel peace and were not quite so afraid as we had been before.

I had a little trouble getting to sleep that night but once I did I slept well, which I am really grateful for.

Thus ends the first day that we knew.


  1. I can hardly write as my eyes are blurry from tears. This touches my heart so deeply.

    I am sorry for the heartache you've experienced.
    In turn, it is wonderful to hear how the Lord has spoken to you through his word and to read of the comfort you find in each other and in the Lord.

    Thank you for sharing your heart.

    Love always,
    Auntie Lisa

  2. Although my son's diagnosis was different (congenital heart defects AS, MVS, and LV cardiomyopathy, and tracheomalasia since then), I remember all too well the devistating call from the midwife, the agony of trying to process it, and the fear of what might come. We aren't out of the woods yet, we've been in the ICU with our son for 11 weeks now, but they are talking about going home until the next surgery. I wanted to tell you that your sweet family is in my heart and prayers. If you ever need to talk or someone to cry or pray with, please feel free to message me. Also look at Psalms 41:3- that was the verse I found when crying out to God in the Psalms. He holds all our tomorrows, and our baby boys as well!