The Beginning of the Story.

For those of you who are new friends or are new to the story of our daughter Evie, I am going to start from the very beginning... a very good place to start (: Since this site is devoted to Evie's life, I am going to skip the basics of John, Lyla and I, but due to their importance I'm sure they were will be intertwined as we go.

We found out we were pregnant with our second child in January of 2009. We had been trying for 3 months and were thrilled to finally get a positive test. We had our 8 week ultrasound and everything they can see at that point checked out fine.

Our doctor does a routine 12 week ultrasound to check for Down's Syndrome and other genetic problems, so we were all signed up and ready to go in. The weeks prior to our 12 week ultrasound I had an eerie feeling that something wasn't right. I had dreams that the baby had down's, that she had cleft palate, and so on. I chalked it up to pregnancy hormones, and told myself not to worry until we had something to worry about.

We went to Immanuel Hospital for our 12 week ultrasound, and while we were waiting for John to finish clinical the ultrasound tech got started. I laid back and waited for the usual "here is baby's heartbeat... here is her head... placenta looks good... etc." I looked over and asked how it was going and I knew by the look on her face that something was wrong. I watched as she looked the baby over, I saw it all - head, arms, etc. She looked at me and said "I just can't get a look at the baby, empty you bladder and I'll be right back." Okay, don't panic right? I "emptied my bladder" and waited. and waited. I called John after about 5 minutes, he was waiting for his clinical group to finish downstairs in the same hospital, and told him that something was wrong and he needed to come up right away.

John made it upstairs and the ultrasound tech re-entered with the doctor. I asked if something was wrong, and the doc responded "that's what we're going to find out." After what seemed like ages he told us that they couldn't find the baby's nose bone, her arms and legs seemed to be shortened, and they didn't see hands and feet. They quickly scheduled an appointment with a specialist the next day, and we left terrified. It was one of the longest nights of my life.

The next day (March 31st) we went to the Methodist peri-natal center and saw a specialist there. After a long ultrasound we were told that the baby had a "skeletal dysplasia" (skeletal abnormality) with no way of narrowing it down any further at this point. Her head and body seemed to be in proportion, her face (and nose) seemed fine, yet her arms and legs were significantly shortened, possibly bowed, growing at least 3 weeks behind. We were told that some skeletal dysplasias are "incompatible with life outside of the womb" but that it was just a possibility and we would know more as the pregnancy progressed. Our doctor was amazing, and still is.

After our 15 week appointment they sent our ultrasound to the International Skeletal Dysplasia Registry at Cedars-Sinai hospital in California. They are the only international registry and our ultrasound would be checked by a doctor in the field who would be experienced enough to hopefully give us a diagnosis.

We have had an ultrasound every 3 weeks since, and the day before I turned 20 weeks, we got the news we were dreading. The specialist called me over the phone on Friday morning the 22nd of May. John was helping my mom at her office so it was just me and Lyla.

The baby was diagnosed by the doctor at the skeletal dysplasia registry as having Osteogenesis Imperfecta, Type 2. There are 4 main types, this being the most severe. Most of these babies die during or shortly after birth. The diagnosis was made based on the severe bowing and shortness of her arms and legs, and the poor density of her ribs and cranium.

Provided the doctors are correct, we will lose our precious daughter. We found out at 18 weeks that she was a girl, but I knew it all along. I am now 22 and a half weeks along, so we have had 2 weeks to process all of the information and plan for her birth.

We decided to name her Evie Jayne. Evie means "life" and Jayne means "God is Gracious" and is a combination of John and Wayne (hubby - John Wayne Elsaesser).

When I was reading an article on MSNBC.com about a mother whose son had a heart defect I read that only 10-20% of mothers whose babies are given a terminal diagnosis continue the pregnancy. I am so thankful to our Heavenly Father that he chose me to carry this beautiful girl and give her a chance at life.

These have been the most heartbreaking and God-filled days I have ever experienced. They are full of mixed emotions. I go into "Lyla mode" during the day, to keep things as normal as I can for her. I go into "Evie mode" during naptime and after Lyla goes to sleep. These are the moments I get to spend loving her, talking to her, feeling her move, praying for her health, praying that she won't fracture her tiny bones in my womb.

Lyla mode isn't always just Lyla mode. Sometimes Evie sneaks in - Tonight we were sitting on the couch and Lyla lifted up my shirt and said "knock, knock! hi baby! i love baby, mommy." These are the times my heart breaks. These are the times I long for Evie to know her big sister. I want to take her to the park, rock her to sleep, sing her lullabies. I want her to be Lyla's best friend. I want to tell her how beautiful she is every day. I may not get the chance to do these things and it is overwhelmingly sad for me as a mom.

I am not sure why we are going through this. It may be for me to strengthen my own relationship with Jesus. It may be for me to share with others. I may have the opportunity to share with other moms who have received the same diagnosis (although I am yet to find one). Whatever the reason, I am thankful to God almighty for his work in my heart. Not a day goes by when I can't thank Him for the wonderful husband and daughter I have already been given. I can cry to him and ask for peace. I head songs on the radio that fill my heart with emotions I can't describe. He is good.

These following weeks are going to be hard. I know this because they are already getting harder. The closer I get to giving birth, the closer I am to having to let Evie go. I don't know how I will do that. I may have said before this pregnancy that I didn't know how I could do this either but my strength is renewed every day.

If you are willing to pray for us, thank you. We could use prayer that as we approach Evie's due date we are given peace and the ability to spend quality time with her when she is born.

This is the same verse I sent out in a prior email update, but it showers me with blessings each time I read it: "That is why we have a great High Priest who has gone to heaven, Jesus the Son of God. Let us cling to him and never stop trusting him. This High Priest of ours understands our weaknesses, for he faced all of the same temptations we do, yet he did not sin. So let us come boldly to the throne of our gracious God. There we will find grace to help us when we need it." Hebrews 4:14-16

I am going to continue to blog and send out periodic email updates after doctor's appointments. I will post those also. I have been sending out email updates every 3 weeks or so, but I have so many other things to share inbetween, so you can find those here.

I hope you are finding grace my friends. Goodbye for now.