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.
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!
Lindsey, John, Lyla, and Evie
Evie profile pic: