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:
Linds your words are so beautifully put, God has blessed me with the grace you have while suffering through Evie's developement. My heart aches for your little family and longs for how God will use this time for His glory. You are a blessing to me beyond words. Love you a ton, Mom
ReplyDeleteLindsey, Evie is such a sweet little doll! I'm so glad you have the privilege of seeing her in 4D! (And the blessing of such a tremendous dr. God must have chosen him for you as well!) You are a beautiful woman & mother, and I feel so blessed to have found your blog. (Alright, so you found mine first.) I am humbled that you pray for Judah and Jared & I in the midst of your grief. I have been praying for you since April, and have wept and grieved with you. That won't change. Knowing your heart just spurs me on to pray with more diligence. When I pray for Judah I will be praying for Evie as well.
ReplyDeleteYour family is in my prayers every night Lindsey! Seriously please let me know if I can help at all would LOVE LOVE LOVE to see you and meet your cute little girls!
ReplyDeleteBecky
I think she looks like Lyla - PaPa
ReplyDeleteI'll probably never meet you but, i wanted you to know that your story and strength has touched my heart. My family is praying for you; the grace of God will get you through this.
ReplyDelete-Mary Beth
What a cutie pie! Lyla too. Love the chocolate drippings... so sweet. Thank you for letting us know what we can pray for. You can never have enough people praying and talking to God. We know his plan is perfect no matter the understanding of the outcomes here on Earth. You are so strong and I'm so encouraged to see you writing it out Lindsey. Keep Writing!
ReplyDeleteHi I had a baby girl with type 2 OI. She was my first baby and through out our ultrasounds the doc said she was a healthy baby. We found out that she had OI hours after birth.by the grace of God she lived longer than doctors expected. Kids/babies with OI are remarkably intelligent and happy.even though she had this Condition we loved her immensely and she brought a lot of joy into our lives. I wish you all the best and my prayers are with you and your family
ReplyDelete