Doc Appointment Update June 29, 09

Hi Friends and Fam,
We had another doctor's appointment yesterday, I am now 25 weeks along. The ultrasound went fine, things are looking about the same. A lot of people have been asking me what "Osteogenesis Imperfecta, Type 2" is, so here are the facts from oif.org:

Type II -

Most severe form (of OI).

Frequently lethal at or shortly after birth, often due to respiratory problems.

Numerous fractures and severe bone deformity.

Small stature with underdeveloped lungs.

Tinted sclera.

Collagen improperly formed.

Evie's arm and leg bones continue to measure small and are very bowed. They almost look bent on ultrasound. The reason she can survive in my womb is that she is receiving her oxygen through her umbilical cord, not her lungs. When she needs to breathe on her own, her lungs may be underdeveloped, and her rib cage isn't ossifying (hardening) like it should, so it will be weak. Her skull is ossified more than it was 4 weeks ago, but isn't where it should be. I was hoping her bones would be catching up, but they seem to be more and more behind as her body grows.

The doctor had mentioned once before that they would consider inducing me at 37 weeks, and that is still up in the air. My initial thought was to deliver around 37 weeks so that she would be smaller, and would have a lesser risk of fracturing during delivery. More recently I have wondered if waiting would be better because her lungs would have a greater chance to develop. The doctor doesn't seem to think that we can predict either of those things. I am going to continue to pray that God will give us guidance and wisdom as we get closer. I would like to have as much time as possible with her, but there doesn't seem to be a magic way to know what would be better for her.

We had some 3D ultrasound pics taken today.

Like I've said before it is so amazing to see Evie's sweet face on ultrasound. She took a big yawn in the room today, and squirmed around like crazy as usual. My heart aches to take her home and watch her grow up. I know that after we meet her this desire is just going to grow that much deeper. Even though it makes me so sad, I still feel blessed knowing that if she doesn't live long here on Earth, we will be reunited for eternity in Heaven. Praise God.

If you are willing to pray for us: Growth, Strengthening, and Healing for Evie's body and that nothing fractures in the womb. That John and I can celebrate her life while she is still with us. Wisdom and discernment in making decisions regarding her medical care. Prayer for my words with Lyla that I can help her to understand the situation in her little 2 year old world. Maybe I can incorporate chocolate ice cream somehow.. that seems to make her happy (see pic)!

Thanks again for you calls, emails, and notes of encouragement. We feel so very loved. I know there are a lot of you going through hard times out there, if I can pray for you please let me know. God is good and he answers when we ask!

Love,

Lindsey, John, Lyla, and Evie

Evie profile pic:

things i am thankful for today...

I'm feeling like my blog is getting a little dreary, so in addition to my deep thoughts, updates, and prayer requests, here are some of my favorite things, in no particular order...
1. John and Lyla's faces
2. sunshine
3. waking up without an alarm clock
4. my parents
5. "wuv ew mommy"
6. the gym
7. going out with girlfriends
8. the Omaha Summer Arts festival tomorrow
9. being part of a bigger picture
10. good music/dancing
11. text messaging
12. looking forward to church on Sundays
13. ice (in my water, and on my ankles)
14. having sisters
15. feeling Evie kick me
16. swimming
17. ice cream and brownies
18. spending time with my grandparents
19. the dream house in my head that has an upstairs laundry room
20. God's word, and the peace it gives my heart
21. outdoor shopping malls
22. bagels
23. hugs
24. guitar hero and tetris
25. watching Lyla talk to her babies and teddys when she doesn't know I'm listening
26. lakes
27. my new flip flops
28. old friends
29. answered prayer
30. true, deep, life changing love
31. playing backgammon with John
32. fake laughing with Lyla, which always turns into real hysterical laughing.

back to reality...

Hi Friends. It has been a good 3 and a half weeks, full of sun, swimming, chasing bunnies, and all of those important summer things. Some days I even feel like I'm having a normal pregnancy. Now I find my heart feeling like it's ticking down until our next doctor's appointment. I love our doctor and seeing Evie on ultrasound, but it's a very real reminder of her condition and what the future holds for her if miraculous healing doesn't occur.

We have had some good time to prepare, which is a blessing because I'm already feeling a creeping sadness as I realize how fast the first 25 weeks of pregnancy have gone, and how fast the last 12 are going to go. We met again with the funeral director two Fridays ago to discuss how we would like the service to go, and the process that Evie will go through getting from the hospital to the service. When I am at these meetings I experience sort of a surreal presence. Faced with death we have been able to make decisions that we think are best for us and for our family without falling to pieces. It is only through God's grace and provision I could even approach the funeral home let alone make plans. It is also a blessing knowing she will be buried alongside some of our family members, and we can join her someday.

We met with the "comfort care" nurse at the hospital yesterday, which also went well. She is very kind and wants to make our time with Evie "as memorable as possible" for us. We may deliver on the "high risk" side of the labor and delivery floor, as there are fewer mothers and babies there and it would be a quieter place to spend our time. We also met the social worker who would help with care if Evie does get to come home with us. If she needs hospice care or visiting nurses she would help.

It seems like every time I leave an appointment I walk away with one unshakable image that I wasn't expecting to hit me so hard. This time it was when the nurse told John that sometimes it is helpful for moms who lose their babies to have something to take home with them, like a stuffed animal, so they don't have to go home without something to hold. I'll be honest with you, I don't want a stuffed animal or a blanket. I don't want a doll or anything to take her place. I want my baby girl. The thought of leaving the hospital without her in my arms is the most painful emptiness I have experienced yet.

The arrangements we have made are going to mean little to me in 3 months if my daughter is gone. It has been nice to see the hospital, meet the nurses, go to the funeral home, and take it all home in writing, but without her I can't imagine doing any of it.

I am praying harder than ever for healing. At times I truly believe with all of my heart we will see small progress at our doctor's appointment on Monday and ultimate healing in the end. It is hard to walk into the hospital, and hear Lyla's precious voice say "mommy, go see baby now" and know healing may not come. It crushes me. Blessedly God has given me the strength to really enjoy these summer days and not fall apart until Lyla goes to sleep. I like to take this time to process the emotions we are going through and prepare my heart.

If you are willing to pray for us, you could pray that God will heal Evie. Pray it, and pray it hard friends! You could pray for me that I will have peace in knowing God will carry me through the next few months and what is to follow. You can pray that I find the words and best way to explain the situation to Lyla. I am so afraid she won't understand. She is her mother's daughter and she cares so deeply for my feelings. You can pray for John that in the midst of my doctor's appointments and tears, he will pass his nursing boards in July!

Our next appointment is next Monday, June 29th. Hopefully we will have good news. Talk with you soon.

Thanks Friends, Love you. Lindsey

by the way - if you haven't seen the video on youtube called "99 Balloons" you should youtube it. It is great.

happy fathers day...

We had a great weekend, I'm a bit too tired to blog, but wanted to give a shout out to my dads -

Happy Father's Day Dad! Hope you had a great one, we enjoyed spending the day with you. I'm glad we made it through those first 18 years so we could finally be great friends, go see Batman at 12:02am, sing in choir together, and enjoy hanging out. It's nice to know you're standing behind me on the choir risers in case I decide to faint (:

Also, Happy Father's Day John, you are an amazing dad to both of our girls. When I am nervous about Evie's first days, I know she will be peaceful in your arms, Lyla always was and still is.

Love you both, Linds

by the way...

I'm not quite sure what happened to the background on the site... I will try to figure that out tomorrow! I miss the beautiful flowers already.

Someday I will figure out how to allow you to "subscribe" to the blog, then you will get an email when we post.

Okay, bye for now.

Hope.

Hi Friends (:

Hope you all had a good weekend. We had a crazy busy one and although I tried to take today to clean up and relax a little, but by the looks of it I ended up relaxing up and cleaning a little. My body is starting to feel the effects of pregnancy, my feet were actually swollen last night... which I think is supposed to start big time around 8 months not 6, but oh well!

Saturday morning we were hugely blessed, my dad found out there was an elder board meeting and asked if they would pray for John and I. It was overwhelming and wonderful to feel the power of God in a room full of people with 100% certainty that God can heal Evie and he may choose to do that. Before Pastor Steve prayed for us, he reminded us that God has the power and ability to heal Evie, and that is our prayer. Yet, out of His wisdom and love for us He may not. I have been reading the Old Testament lately, and am constantly reminded of God's plan when I watch the lives of people go by in a few sentences and effect those down the line who never knew them. The sermon on Sunday was about the issues that tug on our heart so strongly that we have to do something about it. I can feel God using this pregnancy in my life to give me more compassion for those who are hurting, especially moms and their kids. I am not sure where he wants me to go with this but I hope that through prayer and obedience God will reveal it to me.

I wanted to let you all know that while I have been praying for Evie lately, God has laid it on my heart how important it is to pray for my friends. I would love to pray for each and any of you who need prayers, whether I know you or not. For those of you who are already on my prayer list, if there is a specific need that you have, I would love to pray for it. Big or small, it's all important to God. I know there are people that I walk past every day who are suffering and I hope we all take time to pray for each other.

When I was at the gym today, I saw myself in the 360 degree mirror from all directions and my first thought was "whoa lady, lay off the brownies!" but I was immediately reminded of how sad I am going to be if Evie doesn't make it after she is born. I am going to long for my big belly back. I am constantly conflicted with hoping for healing, and planning for greif. I go through both emotions every day. When people look at me and smile because I'm pregnant, I feel both emotions. It is hard to hope when faced with greif, and hard to grieve when faced with hope. I am not sure how I am supposed to feel or handle any of this, so I am trying to trust God that through any "feeling" His word is true, and I will heal.

Lastly, if I run into you guys at church or out somewhere and I seem somewhat emotionally detatched, it's because I know if I let 1 tear fall the other 500,000 are going to come out right along with it. I take plenty of time to cry when I need to, but when I'm in Lyla-day-mode I try to keep it together for her sake (and mine). She just doesn't understand when "mommy's sad."

Love you, thanks for keeping up with us (:

Thanks

Well it only took me 45 minutes to get music on the blog... what!? I know, that's what I was thinking. Next time I will go straight to the Help section before trying to figure it out on my own.

Before moving on, I don't think I could continue our story without thanking the people who have helped us over the past 10 weeks.

First of all, the specialist we have been seeing is amazing. Hopefully you never need a perinatal specialist, but if you do let me know, I know a GREAT one. I'm not sure if it's proper "net-iquitte" to name names, so I'll just say, he delivered this terribly hard news to us with grace, kindness, and compassion.

Secondly, I could not make it through the day without John and Lyla. John thank you for loving me and crying with me. I could not ask for a more patient, understanding, accepting, loving, husband and father for Ly. For you to finish nursing school, work full time, and take this on has been amazing. You have been more understanding than any man I have met, and you can make me laugh at any given moment. I wouldn't want to go through this experience with anyone else.

Lyla gets me through the day. Every day. We play, tickle, play, eat, water the plants, play, run errands, do laundry, play (you get the point) all day. Lyla, you are my best friend (not in that indulgent "my kids are my friends" sort of way, but in a healthy parent-child relationship way!). I could not make it through the next 15ish weeks without knowing I would wake up in the morning and hear your voice.

My mom has watched Lyla at every doctor's appointment since our 12 week appointment, and my dad makes every effort to be there or be supportive and help us understand "medical terms." Kirstin calls me every night to check in, and Kels will do what she can to help. It's knowing I can count on these little things, that make the hard times bearable and the good times better.

My grandparents, friends, in-laws, small group, church family, friends who are in other countries (thanks bianca (: )and people i haven't seen in years call, email, actually read my blog (wow!), and let me know they are praying for us and will help in any way. It's the little things like a 2 hour conversation in my living room, getting the kids together, offering to watch Lyla, asking what I need help with, that are monumental when I look at what could either be a long summer, or a time to celebrate the life of Evie.

I have heard that it is in the hard times when you experience the love of God the most intensely. In my deepest pain, I know that God is holding me together and his heart breaks along with mine. I am suffering for my child, and He is suffering for His. It brings me to my knees to know that somehow God loves me more than I love Lyla and Evie. I can't even fathom it, but I know it's true. His son died, just as Evie may, so that I may live life knowing Him.

We are going back to the cemetary tomorrow, to make more decisions that hopefully we won't have to use. We could use your prayers for guidance.

Love you friends (:

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.