Friday, May 23, 2008

As Close As We're Gonna Get

I finally heard from our genetics counselor today. After months of leaving her voice mails she called me today to tell me what the doctors had finally decided. She made sure to tell me that Avery's X-rays had been looked at by a few doctors all over the country and that they were going back and forth between two diagnosis but had finally agreed on one. Osteogenesis Imperfecta Type II. This is also known as brittle bone disease. Type I is not considered lethal, Type II is. This is a diagnosis that they had ruled out during my pregnancy because they had seen no obvious breaks in Avery's bones during any of our ultrasounds. They had noticed, however, that over time her bones became crooked and misshapen. The doctors decided on this diagnosis because in her X-rays they could see that her ribs looked like they had been broken and healed. She never gave me a name for the other possible diagnosis. All she said it was very rare and that most of what the doctors saw pointed toward the one that they had decided on.

So what does this mean for our future attempts at a family? Well we have been given no more than a 2 % chance that it will occur again. That is a little bit higher than I was hoping for but not as much as I was afraid of. I am only skeptical because we hit all the bad odd when pregnant with Avery, other than getting pregnant of course. The heterotopic pregnancy that was found at 11 weeks had about a 1% chance of happening. Avery's condition was also very rare and we just happened to hit that as well. I can't help but wonder what our next attempt would be like.

This is something that Skeet and I probably passed on to her but there is no way of testing us to check for sure because it can affect only one egg or one sperm. They could possibly test our embryos but it is a very complicated and extensive test and would most likely make it less likely that the In Vitro would work. The suggestion that we were given, if we choose to go ahead with the FET (frozen embryo transfer) is to get frequent scans throughout the first part of the pregnancy until the diagnosis can be given or ruled out. If we did go that route, the only purpose that the scans would serve for me is to give me peace of mind if the baby is healthy as early on as possible. If it does occur again we already know that we would not terminate the pregnancy, everything happens for a reason and if we were chosen to be the parents of two special angels then so be it. My only concern is whether or not I can take the chance, even if it is a very small one. The fact that there is any chance at all scares me to death. The only thing that I know I can do is pray. Pray that my Heavenly Father will guide me in the direction that He has planned for me. The He knows what is in store for us and that His will be done.

Skeet was surprisingly optimistic when I told him, I know that he has been scared so when he reacted so well it did help me a little bit. But I couldn't help but cry, I don't know if it was out of relief of finally having an answer or out of fear of what is to come, but I stopped at the cemetery, sat in front of Avery's grave and cried, harder than I have in a while. Then I came home and slept. I feel a little better now, but I still don't know what we are going to do other than once again, put all of our faith in the Lord and pray that he will guide us.

I am going to bed now, I hope you all have a great Memorial Day weekend.


Anonymous said...

((Hugs)) to you. As you know, Faith had OI Type II (diagnosed in utero) which is maybe why I thought she and Avery looked so similar. We were given the same chances of it happening again, but we don't do well with odds, so we'll see.

Amy Jo said...

I am glad that you found the closure in the diagnosis you were waiting for. I know after Colleen, I kept thinking about the chance of this happening again. Instead I tried to focus on the chance of it NOT happening again. With you, there is a 98% chance your baby will be healthy and that's what I will go on! I know that it's hard to think that way with all you have been through. But, like I said before, I know God will deliver a healthy baby into a loving home that you and your husband provide. I think of you often, my friend.

Anonymous said...

Oh, I forgot to ask..did they send off any collagen tests to make a definite OI diagnosis? I guess my story is sorta opposite yours- they thought Faith has the skeletal dysplasia and then changed that to OI.

Angel Mom said...

I've been reading your blog for a while but I don't remember if I have commented. I wanted to be sure and comment on this post though because our daughter had OI type II as well. Before she was born, we were told she had thanatophoric dysplasia. She was diagnosed wth OI the day she was born.

I know how scary the odds are. As you said, if it happened once, couldn't it happen again? We had a healthy daughter before Syd.ney was born. After she died, we went on to have two healthy sons and another healthy daughter. My pregnancies were so scary and I worried the entire time. But I would do it all over again.

((Hugs)) and prayers that you can make the right decision for your family.

The Valiant Family Updates said...

Oh I am so glad you have answers...I can't imagine what it must be like to have the decisions you are faced with. I am so happy for your continued posting and I LOVE your new design-so pertty and it is a perfect fit n Avery's honor! Hugs!

theidahoklan said...

I haven't checked on you in a while, but I am glad that you finally got some results. We were down in Cedar on Easter and I visited Avery when I visited Nate. I left her some flowers I hope that was okay. Her head stone is really beautiful. Well keep on going on, I have to agree with you that you have to follow the lords plan. He has a plan for all of us. Oh and my blog address is wrong in your address book.
Love ya,
Amber from Idaho

Tina said...

I can't imagine what you're going through and the thoughts that run through your heads. My prayers are with you guys and I pray that when you do the FET that all of your prayers will be answered. Keep your head up; you are an amazing person!

Jennifer said...

I'm so glad you finally have a diagnosis. Even though not all of your questions were answered and you still have some fears, I'm with Amy Jo and looking at a 98% positive outlook, and with angelmom who has four healthy children along with an OI angel in heaven! Blessings and best wishes to you and Skeet as you continue on this journey!

Tonya said...

I am probably the last to respond, but I am glad you finally have some answers. Not that it gives you any comfort, but as you said, Avery was meant to be created. Your next child, if you chose was meant to be created. I pray that the OI will miss your next child as I know what a joy having children is to you. Avery and your other children will be perfect! I pray you come to an easy decision when you make it. Thinking of you always!