Tuesday, June 9, 2009

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.

25 comments:

  1. Lindsey I love hearing about Evie! Her life will be celebrated.
    Have you read the blog Bring the Rain?
    Love you!
    Heather

    ReplyDelete
  2. Lindsey, thank you so much for sharing your heart and letting the rest of us in on your lives. I am sure we will all be enriched and touched by Evie's life. I will continue to pray for God's peace for your lives and for the precious time you will have with Evie. Love you and marveling at the strength and grace God has given you already,
    Shari

    ReplyDelete
  3. Stephanie MillerJune 10, 2009 at 8:41 AM

    Lindsay, you and your husband are an inspiration to me! I will be praying for strength, faith, and understanding for both of you and for your families.

    ReplyDelete
  4. Lindsey, my heart breaks for you all and what you are going through. You are truly a testimony of God's love and grace, and I know He will continue to provide for all your needs as I know He already has. Thank you for opening your heart and being a tremendous encouragement. You all will be in my thoughts and prayers, much love to you,

    mary shaul

    ReplyDelete
  5. Evie is very blessed to have you both as parents. We are praying for you both that you will have the precious time with Evie. Lindsey, you are a very strong woman. Your words have touched us all. I wish (we all do) we could be in your presence and give you a huge hug. We love you all very much. Thanks for setting up the Blog. Great idea! Hugs & Kisses.
    ~ Carrie Waite & Family

    ReplyDelete
  6. Oh Lindsey, I am so glad you're blogging as I feel disconnected to you since I'm no longer seeing you at MOPS. You are a faithful and willing servant! I will pray for Evie and for you, John and Lyla as you walk this part of your journey. Much love,

    Alice Spence

    ReplyDelete
  7. To my beautiful friend and her precious Evie,
    I am so glad that you started this blog so that we can keep up with little Evie's life from day to day. She is in our hearts and prayers on a daily basis. If there were words to express what you have meant to me in the last few years as we started our motherhood adventure, I would try and type them, but there aren't. Linds you are a specail messanger of God's hope, grace, and love and have been since the very first time I met you. Even at this hard time in your life, your song is still the same! It inspires me every day. How blessed I am to know you! Love you. Abbi and boys

    ReplyDelete
  8. Lindsay-Thanks so much for sharing your story. We have loved watching Lyla grow up through your pics on Facebook, and now we will follow the life of your precious Evie. I always talked to my babies when they were inside of me and I knew they understood the love I had for them. So keep having your "Evie Time" and that special bond you have with her will be so precious to you. We will pray for you, John and Lyla and ask our friends out here to pray too. Love to your family--Shari Heinke

    ReplyDelete
  9. Lindsay and family,

    We will definitely be praying for you and your family. You are such a beautiful person, and we send you lots of love from Chicago. Thank you for having and sharing such a loving and serving heart!

    In Jesus's abiding love,
    Emily and Ryan Wilkins

    "Cast all your anxiety on Him because He cares for you," 1 Peter 5:7.

    ReplyDelete
  10. This comment has been removed by the author.

    ReplyDelete
  11. Lindsey,
    I just sat here and read this and cried and my heart broke for you. You are so amazing to be crying out to God instead of wondering why me and cursing him. I can only imagine.......I have read a lot of blogs online that are other inspiring women who have gone through the same thing you are going through right now. My favorite one is Angie Smith, her blog is Audreycaroline.blogspot.com go and read her story she is an awesome strong woman of God just like you!
    I know we haven't talked or seen eachother in years but honestly if you need anything, to laugh, cry, scream, ANYTHING at all please let me know, I am here! Thanks for sharing your heart and your family will be in my heart and in my prayers! Love you girl!

    Becky

    ReplyDelete
  12. Dear Linds and family, we are so grateful to get to hear about this precious little girl...she is already changing lives, and she is yet to be born. I love how you said you didn't know why this is happening but you know there has to be a reason, and you are resting in that. How beautiful, that we are most often touched by God in the wilderness. This verse has comforted me in dark times - “Therefore, behold, I will allure her [Israel] and bring her into the wilderness, and I will speak tenderly and to her heart.” [Hosea 2:14, Amplified Bible]
    Just know you have friends from far away loving and praying for you and your beautiful family. Bear hugs, Casey and Zach

    ReplyDelete
  13. I can't stop crying!!
    I've known from the moment I met you in 7th grade that you were/are the most amazing person I had/have ever met. You have been my longest and best friend all my life. We've always joked how I'm the strong one and I would protect you from harm. I wish more than anything I could protect you from this. As your best friend, I wish I could carry this for you, I want to shield you from this.
    But when I read your emails, and now your blog, I know that this is doing work in you and in the end you will be blessed. The fact that you can realize this while it's happening, proves that you've always been the strong one. You will make it through this. And in the end, you will be better (although I'm not sure how God plans to improve on perfection, but I'm sure He has a plan). I haven't been much for praying lately (that's kinda your job in the relationship) but it's become a daily thing now with you, evie, john, and lyla the focus of my prayers. I love you and hurt for you. I'm here for you and will always be. thank you so much for sharing this... you and Evie are already changing lives.
    bianca

    ReplyDelete
  14. Elsaesser Family,
    I am so blessed to know you and the character of God I witness in you. Thank you for sharing that with us. As you said God is good all the time. Your focus on Him is an inspiration. Thank you for allowing us to pray and love on all 4 of you. Praise Jesus that we have eternity in heaven to be with the One who created beautiful Evie. You are in our prayers. XOXO Brooke Kubicek

    ReplyDelete
  15. Lindsay,

    While I have never met you, I do feel I know you through John. I love hearing him talk about you and your family. I am so sorry to hear about little Evie and her condition. I just sat here crying for you all. Life is not fair nor easy, but you are very strong and you have a wonderfull supportive husband. I just don't know what else to say. I will pray for you and your family. Jessie

    ReplyDelete
  16. Sweet Lindsey,
    As you know Linds, Mom's fix things - thats what we do as Mom's we make it better. God has given you and John a precious child that I can't fix and it breaks my heart. God asks me to trust Him, He loves you and will work through your life in an amazing way. So I'm am doing the only thing I know how, wrapping my arms around you and loving you with all my heart. Trusting God. Evie will be a blessing to many through your faith and testimony. I love you linds, Mom

    ReplyDelete
  17. Lindsey,
    My name is also Lindsey, i was in nursing school with John and was getting updates from him when we would have class together. I just wanted to tell you that you are an inspiration to me.I dont know how else to say it. my heart breaks for you as you have to face the thought of living life without Evie. i have two girls as well, and i too dream about their wedding day, their relationship as sisters, etc. My biggest fear is losing one of them. God is teaching me how to "give" my kids back to him and its an everyday process. all this to say.. thank you for sharing your struggles and thoughts here on this blog. I know you said you wanted to help other mothers who are going through the same thing you are but you havnt found one, well you have helped me!
    Also i want to thank you for choosing to carry Evie for as long as God allows and for enjoying every second of her precious life! I will be praying for you and your family daily.
    Lindsey Cain

    ReplyDelete
  18. Lindsey, It has been a long time since I have seen you. I talked with John today and he told me about your blog. I love it! Hopefully you will find it somewhat therapeutic. I know I have with mine (www.mi4boys.blogspot.com).

    Evie is so lucky that God has chosen you and John as her parents (and Layla as her big sis)! My heart goes out to you as you and John!

    If you ever want to talk or email I would be happy to chat. I know our situations are different, but I think I understand some of what you are going through! I don't know if you know about Vincent and the syndrome he was born with, but as I was reading your blog, I could definately identify with many of the feelings you are having and have gone through!!!!

    Cherish every single second that you have your little Evie she is such a blessing!!!

    Love Staci (OT from QLI)

    ReplyDelete
  19. Lindsey, I forgot to post this link for you. Check this out! http://www.stringofpearlsonline.com/index.html

    If the link doesn't work, google "String of Pearls"....

    Hugs Staci

    ReplyDelete
  20. hi lindsey,

    kirstin mentioned your blog so i thought i'd visit. wow, what a truly inspiring story. please know i'm thinking of your family and praying for you and your little angel, evie. it was good to see you saturday too, you look great!

    "i am the light of the world. whoever follows me will never walk in darkness but will have the light of life." -John 8:12

    love,
    leigh lindstrom

    ReplyDelete
  21. Hi Lindsey! I work at QLI with John and have met you a couple of times. I have been reading through your blog this evening and my heart breaks for you both. Please know that you, John, Lyla, and Evie are in my prayers constantly since the afternoon John shared what you guys were going through at work. I also want you to know, that reading your blog has been so encouraging. You are such a woman of faith, a strong woman who in the middle of diversity is crying out to God instead of pushing him away. God Bless you all! Megan (nurse at QLI)

    ReplyDelete
  22. Lindsey, John, Lyla and Evie,

    Kirsten had told me your story a few months ago and I just found out the wonderful news! Congratulations! I am amazed at everything you had to endure the past few months and the strength you showed throughout your entire pregnancy. You truely are an inspiration to me. I just had a daughter 5 months ago and can not imagine the thought of losing her the entire time I was pregnant. I am not sure I would have been able to carry her the entire 9 months knowing I could lose her. I know now that I should always trust God no matter what because if you have a little faith and trust he will surprise you! I can't wait to share your story with others.

    Congratulations and God Bless!

    ReplyDelete
  23. Me and my mother were reading your blog,
    My mother is crying now.
    May God Be With Evie

    ReplyDelete
  24. I got here through Blogs of Note. Praise God for the precious gift He has given you! I have prayed for you. May God be your comfort. He never fails. Lance (Manila, Philippines)

    ReplyDelete
  25. God is so good. Praying for you and the rest of the family, especially Evie. I was diagnosed with Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria (very rare blood disorder) while 13 weeks pregnant with my daughter. My high risk OB actually suggested to terminate the baby so that I could get "fix." I prayed every day and night. To make a long story short, my daughter came out healthy and I had a bone marrow transplant last May.

    ReplyDelete