(These first seven blog posts were originally letters, written and emailed to our friends and family. I am including them here because they are a big part of telling our story.)
To all our friends and family,
Ryan and I thank you from the bottom of our hearts for your compassion and kindness to us in this week. We are so humbly grateful to be surrounded by such a beautiful picture of the body of Christ: meeting practical needs, encouraging us and lifting us and our family in prayer. Your support and God’s grace has kept us going when we weren’t sure if we had anything left in us.
As many of you know, we have named our sweet daughter Evie Grace (a short “e” sound). This name means “life and grace” or “life of grace”. In the first ultrasound we had last Wednesday, before we knew that there was anything wrong, we enjoyed her beautiful face and how active and happy she seemed. It comforts us now to think of that and remember that she is not in any pain.
Since our last letter we have received some new information that we can share with you. We now know that Evie does not have Trisomy 13 or 18 (good news!). While the first round of test results only tested these chromosomes, we will receive more results from that same test later this week which may reveal to us that another chromosomal abnormality can explain what may be causing these problems.
Yesterday morning we returned to Vanderbilt for a fetal heart echo and met with a fetal heart specialist. After nearly 2 hours of exploration the doctor was able to explain with much more certainty exactly what is taking place with Evie’s heart. While on Wednesday we knew that she had a hyper-plastic (too small) left ventricle, we now know that Evie’s heart has 5 separate and very serious problems. The doctor explained that these problems will not likely threaten her life inside the womb. Just as in any “maternal-fetal” relationship, I am acting as her life support – breathing and oxygenating her blood for her. Once she is born, her very sick heart and under-developed airways will not be able to support her body.
We have great comfort in knowing that the condition of Evie’s heart and her body is not an accident. Psalm 139:13-16 says, “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfullymade. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me when as yet there was none of them.” It helps us so much to remember that the state of her little heart is not an accident – God formed every bit of her and He has ordained all of her days. He has them numbered and He knows. While we know that Evie‘s life is very fragile, we are also reminded that our own lives are also just as fragile. After our time at the hospital, learning about our daughter’s heart, all we wanted to do was to run home and press our ears to Oliver’s chest – praising God for the blessing of a heart that beats and functions. We are rarely arrested by our blessings, but always by our adversities.
And as for now, we will wait. We will wait to see if Evie makes it to term (the end of May) and, if she does, savor whatever moments God grants us with her in this world. We have a peace in knowing that because of God’s great love for us, we have all of eternity to get to know her. Praise God from whom all blessings flow!
All our love,
Ryan, Raechel & Oliver