30 January 2008

(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 wonderfully made. 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

24 January 2008

(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.)

Dear family and friends,

We are writing to share with you some sad news and to ask you for your prayer support. Yesterday afternoon Ryan and I went to Vanderbilt for our routine 20-week ultrasound and to get a glimpse of our new sweet baby girl. After a longer-than-usual time of exploration, the ultrasound technician brought in her superior to help understand her findings. We were informed that there were some abnormalities with our baby's heart as well as some inconsistencies with bone growth in her limbs. They said they would feel better if we went right away to see a high-risk neonatal specialist at Vanderbilt Children's Hospital for further investigation.

We were grateful to be seen right away and for all the careful, attentive care that was given to us as we somewhat robotically did as we were told, not sure what to think or how to act. A second, more specialized ultrasound was performed, and as the room filled with more and more unpronounceable titles carrying solemn faces, we both knew thenews wasn't going to be good.

A team of very gentle, and very skilled doctors explained to us what was going on. We can't remember a lot of what they said to us yesterday, but we do know that our baby girl has a lot of fluid on her brain and a very serious heart defect involving a hyper plastic left side of her heart. This means that the right side of her heart is enlarged and the left side is underdeveloped. She is functioning well now, but once she is born and her lungs depend on her heart to supply blood it will be very different. We also know that most babies with these severe problems do not survive the first trimester and that the second and third trimesters are not guarantees either. The doctors explained to us that these problems as well as the under-development of her limbs are pointing to a chromosomal issue (likely Trisomy 13 or 18). They performed another test that will tell us if one of these is the case. (we can hear as early as Friday the first results of this test). Unfortunately, if we are dealing with either of these, it will just be a matter of whether or not the baby survives the pregnancy, and further, how long it will survive if it is born. Whether or not this is a chromosomal syndrome, her heart is very sick and our options on how to proceed (newborn heart transplant, a series of high-risk surgeries on her own heart, or what the doctors call at-home compassionate care) are very weighty decisions to make. We are also concerned for her as the fluid in her brain puts pressure on brain tissue while she is still unborn.

As you can imagine, we are both still very much in shock. It is difficult for us to know exactly what to do or how to function. Now that we're back at home, nothing feels or appears any different than it was yesterday morning - I can still feel the baby somersaulting inside and still, of course, look very pregnant. We can't tell you enough how much we covet your prayers at this time as we process all of the information we have now, as well and the information that is yet to come. We know that there will be a lot of decisions for us to make in the next few months as we love our little girl while she is with us and plan for the time that she is not.

As we left the Children's Hospital yesterday evening we were reminded of what Jesus said to his disciples in John 16 shortly before he was crucified. '"Yet I am not alone, for the Father is with me. I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world"'.

Our hearts are breaking, but not as those who have no hope. We are trusting God to carry us and looking to our friends to be with us.

All our love,
Ryan, Raechel & Oliver