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Wednesday, July 30, 2008

Bad news

I have not posted since I had the amniocentesis done. I just didn't have it in me. Last Wednesday, we found out that the initial FSH results showed Trisomy 18. The full results came back the same. Our precious baby girl has this terrible disorder.

We decided we had to give her a name right away. I said something about Mary Grace, but "T" said she didn't like it. She liked Jenna Grace better, so that is what her name will be. I feel like she will never get to know her sister, so this may be one way she can feel close to her.

We spoke to our ob/gyn yesterday. She told us the baby will be severely affected by the Trisomy 18. She has clubbed feet and the cystic hygroma had grown since the first level 2 ultrasound. My amniotic fluid is very low, indicating a problem with her kidneys. She will suffer if she makes it through birth.

I just can't do that to a child of mine. I can't bring her into the world, which is already hard enough, only to hurt and be in pain and never be able to understand why she is hurting. It isn't fair to her, and it's not fair to "B" and I or to "T".

I wish I had the strength to carry to term, but I don't. I'm not that strong. Every kick is a cruel reminder that I'm not going to go home with a child in December, that she will never grow up and never be whole. How can I stand that for the next five months? I can't do it. It would drive me crazy.

I have agonized and agonized over this decision. I'm not sleeping well at all. I wake up, and the first thing I think of is my baby and whether she is still alive or not. If I don't feel her move, I wonder the same thing. I know I can't do this for the next five months.

So, we are ending the pregnancy early. I hate the word terminate or abortion. To me, that implies that this is something we wanted to do, that we had a choice. We don't, not for us. We would not be ending this pregnancy if this disease was compatible with life, but it's not.

I will have to travel to Atlanta, which is whole other post in itself. I will write more about that later.

I just wanted to say that right now, I need support, not judgment. Even those who don't agree with what I'm doing have to know that I'm doing this out of love for my child and that it hurts me to end a much wanted pregnancy.

11 comments:

Kim said...

I cannot imagine a more difficult decision to make, and I'm sorry you have to go through all of this. I just wish I had something deeper or more meaningful than I'm sorry - somehow that just doesn't seem to be enough.

I'm keeping you and your family in my thoughts and prayers -

Kim
(Jersey Chick from AW)

Jami said...

I came across your blog in my quest to find out about Trisomy 18 after my quad screen showed that I was at a high risk for it. I recently had the 2nd ultrasound done and physically everything looked fine, my due date is December 7th. The doctor said my chances of the baby having Trisomy 18 were 1 in 100 now. All I can do now is pray for a safe and healthy baby come December. I am so, so, sorry about your situation and want you to know that all of those thoughts have gone through my head. I hope you find strength through your first child and your family. My thoughts are with you and I will keep up on your journey as well. Take care,
Jami
St. Louis, MO

Karissa said...

I've followed your story on the babycenter December board and left a comment there for you when you originally posted your FSH results. I wish you peace and comfort in this incredibly difficult time. It is most important that you make the decision that is right for you and your family. I can hear the agony in your decision through your post here, and know that I support you 100%. I can't say I understand what you're going through because I haven't been there myself, but I think I would probably make the same decision if faced with the same circumstances. You don't want your baby girl to suffer, and that decision is based entirely on love and concern for her well-being.

Peace to you.
kb from babycenter December

Matthew&KyleighsMommy said...

I am so sorry for what you're going through. Although I have never been in your shoes, I think if I were, I would make the same choice. The only thing that you said that I don't understand is "I wish I had the strength to carry to term, but I don't. I'm not that strong." I truly believe that you are showing great strength by not allowing your sweet baby to suffer.
God bless you and your family.

Amy from BBC

Megan said...

I'll be keeping you and your family in my thoughts and prayers.

Megan from BBC

~Denise said...

Momma, you are in my thoughts. Please let me know if there is anything I can do for your family right now. I cannot imagine the pain you feel... I am so sorry. ~City Granola on BBC

paperbagqueen said...

My heart hurts for you and your family. I can't even begin to imagine what your situation feels like, as I've never been in it myself. However, just reading through your blog, I can tell that this wasn't by any means an easy decision for you, and I wish you all the best. You truly are an amazing person to me.

You and your family are in my prayers.

Puddles+2 from BBC December

Grace said...

I feel so sorry that you have to make such an agonizing decision, and I totally understand that you need to do this because you do not wish your baby to suffer.

I would do the same thing in a heart beat.

It breaks my heart to see how bad you feel. I just wish there is something I could do or say to take away your pain...

But the only thing I could do is to post this message to let you know that you have my emotional support.

- Grace (from BBC)

Mark, Holly and of course Brianna said...

I will keep you and your family in my thoughts and prayers! (((((HUGS)))))

Holly from babycenter

Heather said...

You are incredibly brave and such a thoughtful, loving mother. What a difficult decision you have been forced to make. You have my kudos, my sympathy, my respect, and my love.

Heather from BBC

JulyBaby710 said...

I'm so so very sorry to hear about your baby. I'm glad to know I'm not alone in our decision to let our little boy go. They thought he had trisomy 18 at my screening and the amnio found triploidy which there is 0% chance of survival where we still had hope with T18. Fortunately he went on his own a day before the induction so I did not have to live with me stopping his heart which was the only thing I would have more trouble healing from. Thank you so much for sharing your story with me.