Friday, July 6, 2012

Eden Marie

She's a girl!
On July 3rd, we had Eden's "20 week" ultrasound. Our only concern was whether she was a boy or a girl. The ultrasound seemed to be pretty standard. The tech chatted with us about Brooklyn, our first daughter, we found out Eden was a girl when she finally uncrossed her legs, and the tech left the room at the end to go get our pictures. During that time, James and I discussed the name. Prior to finding out Eden was a girl, we hadn't thought of any girl names.

He suggested Eden, and I immediately fell in love with the name - he always suggests the most beautiful names. We decided Eden Marie would be our baby girl's name, and we were so excited. The tech took a long time coming back to the room, but we weren't sure why - we never even dreamed it was because something was wrong. When she finally came back, she handed us three pictures; one of Eden's arms and hands, one of her foot, and one of her "girl parts". I was disappointed we didn't get one of her little face, but I assumed it was because she was so wiggly, and the tech couldn't get a good enough picture. The whole time I was there, it never occurred to me to ask if everything looked okay, because I guess I just assumed it did. I guess it was a blessing I didn't think to ask, so the memory and joy of finding out our baby is a girl wouldn't be tainted in that moment. 

Her perfect little foot.
We went about our day as usual, stopping at Joann's to buy some cute girly fabrics for wipes and diapers that I'd be making for Eden and Brooklyn's "stash". We we standing in line at Golden Corral when my phone rang. I didn't recognize the number, but picked up anyway. I didn't hear who it was at first, and was confused when he asked if we were still in Rolla. When I realized it was my doctor, I explained that I thought he may have the wrong patient, because we weren't in Rolla. It was just confusion on his part about were my appointment was, but he said there was something about the ultrasound that he needed to talk to us about. He asked if we could come in that afternoon. I immediately got worried, so we requested a refund and left the restaurant. We got an appointment for 1:30, and I remember how horrible the ride was to the appointment. It was about an hour drive, but it seemed to take forever. 

When we arrived at the doctor's office, we were early, so there was more sitting around waiting. I was in tears many times waiting for the appointment, because I was terrified what the doctor had to tell us that he couldn't tell us over the phone. When we were finally called to the back, we sat around waiting some more. Each minute felt like hours. Finally my doctor came into the room. He looked sad and as he sat down, he said, "Your baby has a serious birth defect. It's called anencephaly, and it's 100% lethal." I completely lost it. I started crying hysterically and asked if the ultrasound could be wrong. The doctor told us the specialist went over the ultrasounds many times. We just sat there and cried. The memory of what was said was foggy, but I remember there were tears and he explained what the "options" were, etc. I'm not sure how long it was that I sat there and cried, but eventually I ran out of tears and asked for a paper explaining the birth defect. The doctor left the room and we cried some more. When he came back, he gave us the paper, hugged us, and we eventually left.

I called my mom and told her the news, and cried the whole way home. I cried the rest of the day, and much of the night. Sometime that afternoon, I got an appointment with the specialist scheduled to have another ultrasound and to talk about the "options". It was a horribly long wait for that appointment, though really it was less than 48 hours, and we did nothing but cry and pray. At that point, I was in such shock and despair that I didn't think I'd be able to continue carrying a baby that wasn't going to live. We thought and talked about a pre-term induction because we thought it might relieve our pain sooner, but I also realized it meant cutting Eden's life short. I felt so uneasy with that decision, but I knew it was something we had to think about, because I wasn't sure I could mentally handle going through the next 5 months. I felt so completely alone.

That first night was filled with nightmares. It was a very restless sleep, and I woke up the next morning both mentally and physically drained. I managed to get through the next day, which was Independence Day. Our plans of Fireworks and Races the night before was obviously cancelled, but it didn't seem much like a holiday at our house anyway. I cried a lot, prayed, walked around aimlessly, talked to my mom, cried some more, prayed some more, and just sort of waited for the next day to come. That night I took a benedryl to help with my allergies, and because it always knocks me out. I got some sleep, but it was sleep filled with dreams and nightmares about what was to come. 

The next day seemed to drag by so slowly, waiting until we could leave for our appointment. When we finally left, my dad came with us. It was a very long drive - about 2 hours, but it seemed like 8. I had trouble catching my breath the whole way up there, and I was shaking as we waited to see the specialist. I kept praying for a miracle. We were led to the ultrasound room about 50 minutes after we arrived at the office, and the specialist talked to us for a bit. He explained what he saw in our ultrasound, and then he gave me another ultrasound. He showed me how Eden's head was different from that of a healthy newborn's head. I cried some more and he started to explain the options to us. He explained how the only thing our insurance would cover was carrying Eden to term and having a "normal" delivery, and that made me cry some more. I felt trapped and like I was being forced into carrying around a constant reminder that we were going to lose our second daughter. 

I know now that I was looking at everything the wrong way in those initial moments, but I think it's probably something that crosses most people's minds at one point or another when they are given such a dire diagnosis. It seemed like inducing labour very early might spare us some of the suffering and anguish we would be going through, but deep down I knew it wouldn't, and deep down I knew it would be something I'd regret if I let happen. I am so deeply sorry and ashamed those thoughts even crossed our minds. I left the appointment devastated, bitter, and angry at God for not healing Eden or making the original ultrasound wrong. I cried half of the ride home until we stopped for James to get something to eat. While he was in the restaurant, my dad and I talked and he helped me to hear what God had been trying to tell me (and what I had been trying to ignore) since we first heard Eden's diagnosis. 

Clasping her almost looks like she's praying.
Eden is still a miracle, and she is still our child. We are going to lose her far sooner than we want to, but we need to realize that the time we have left with her is incredibly precious and should not be taken for granted.  I would never erase my first daughter's life if something were to happen to her, so why should Eden not get that same love and acceptance from her parents? We decided from that moment on that we were going to celebrate this little girl's life, and we were going to make happy memories surrounding her existence. Eden Marie will never be forgotten, nor pushed aside as a sad memory. She's a real person, and she's still alive right now. We are going to make sure that every precious moment God gives us with our daughter is completely cherished.  She'll never know anything but the love of her family, and the love of God, and while it's going to be incredibly hard to lose her, we'll find comfort in the fact that we did find joy in her life, however short. We just pray that God gives us some time Earthside with our little girl before He takes her, because we all want to meet her. We love this little girl so much already...and we are going to continue to love her for a lifetime and more.


  1. I am so very proud of you! I cannot imagine your feelings right now but I do know that you are special and this child was given to you for a reason. I may be atheist but I do believe in karma and fate to an extent. I know you love and cherish your daughters no matter what.:)

  2. Hi Ginny,
    This is Lisa from NY.....your strength is inspiration to all of us! I too believe in KARMA and yours is will be blessed ten fold for your faith, love and willingness to share your story. You may bring hope to someone who had no clue how to search and find the rainbow at the end of the storm. You are an angel carrying an angel and that is a huge honor in God's eyes. God's every blessing to you and yours!

  3. As your uncle who has known and loved you all of your life, I am very sad about all of this. I commend and admire your strength and courage and ability to turn this horrible situation into a positive experience. I don't know what what was said between you and your father in the car that day but know that obviously God had given him the words to pass along to you. God gives us trial and tribulations to test each and every one of us. to see what we will do with any given situation. Although we may not understand the why's, he does. My faith has been tested in different ways over my life to the point there wasn't any left. Somehow though something little happens to remind me that he is there. I believe God joins a spirit to an earthly body like a hand to a glove. Once the spirit fills the glove, it comes alive. I also believe that even though God gives us an angel, our time with them may be limited. He may need that angel someplace else to enrich the life or lives of others who may be suffering from other earthly situations. I cannot imagine not having any of my own children or my nieces and nephews in my life. Each one of you has your own special qualities and quirks. They are what makes us individuals. We may never know why such a horrible experience must happen to anyone but, we have to remember that Gods plan may not necessarily be our plan. People come and go throughout our lives. Some for a minute, some for a life time. Either way, they touch us and make us who we are. Eden will always be a part of all of us. Whether we get to spend earthly time with her or not, she is a part of "our people." Some how I feel that this situation is going to guide you in a direction you never dreamed of. Maybe a spokes person for other parents of this horrible affliction, or to give love and compassion on a more personal level to parents of this experience. Ginny and Jamie, you are not alone....God is in your corner and has a plan. He will not give you any challenges or obstacles you cannot handle or survive. Keep your minds and hearts open to the little things that may lead you to a greater cause.
    I love you all very much! I pray for your strength and courage to continue on and wish you peace with God's plan for you.

    "Chunkie Unckie" Uncle Johnny.

  4. I am crying for you. I'm crying out of joy for my kids. I love that you are chronicling Eden's life in your womb.

    My heart aches that you are going through this but I also feel such gladness that you at least get this time with her.

  5. What a wonderful way to approach your daughter's life!! You are an inspiration.
    Thank you for doing this blog! It will help many many people. However brief her life, Eden Marie will not only be loved, she will be helping others through her story, and through your generosity of heart. Thank you for sharing her with us in this way!!