Tuesday, February 9, 2010

Our Story IS God’s Story

I was going to originally title this post, “The Good, The Bad, & The Ugly of Prenatal Testing”, but in the spirit of optimism decided to go with my GOD title.

Suffice it to say, that when I haven’t blogged in awhile, it’s a safe bet to assume that I have had heavy thoughts on my mind.  This would be the case since I posted last week.

In a nutshell:  my high-risk OB offered me several different options when it came to prenatal testing including non-invasive treatment (NT ultrasound), much more invasive treatment (such as amniocentesis), or the do-nothing at all approach.  Let’s just say, I should of went with the last option.

Now, I’ll be the FIRST to sing the praises of the medical community.  After all, after 4 consecutive miscarriages attributable to various causes, we turned to the medical community and the option of  in vitro fertilization to conceive our first born, Mary Catherine.  We have NO REGRETS!!!

But, prenatal testing…that’s a different beast entirely.  And truth be told, as much as the scientific community has made in advances in helping infertile men and women overcome their struggles to conceive, there is still SO MUCH we as humans do not understand about the actual workings of conception.  Hormone levels included.

So, being 40ish, I felt “pressured” if you will to at least do “something” to check on the well-being of this little life growing inside of me and opted to do the NT ultrasound.  It was a lovely experience and baby looked beautiful practicing his/her acrobatics and waving at us from in utero.  After the ultrasound, as I was getting dressed, the technician said, “now you know, I need to walk you down to lab to have your blood drown for the NT blood test.”  I was shocked and unprepared to respond.  The last thing I wanted was blood work…I have heard so many stories about false positive readings and the anxiety it caused, but because I was caught off guard, I blindly followed the tech to lab.

Ten days passed and not a word and I figured all was good.  Until.Last.Thursday.  I got the dreaded “triple screen phone call.”

Basically, it was explained to Chris and I that my blood work showed elevated hormone levels that point to an increased risk for Down’s Syndrome.  Honestly, I wasn’t all that surprised.  The risk level she gave me for a 40-year old woman is 1:56 births that will be a Trisomy-21 baby; my blood work showed a risk of 1:17.  But, if you want to play the numbers game the odds are still in my favor , 94%, that I would have a normal-chromosomal baby.  The doctor was very kind and said my NT ultrasound had great measurements (neck measurement was 1.88 mm and needed to be less than 3mm) and the blood work was shocking. She reminded me that this was not a diagnosis, just a risk assessment and that the test carried a high false positive rate.

I researched a ton over the weekend and felt really calm.  I truly convinced myself that this was a false-positive response and that the follow-up ultrasound at the perinatologist TOMORROW will be fine.  Until I had my 14-week check-up yesterday.

I met with my actual OB (not the on-call doctor that delivered the report) who was nothing but doom and gloom.  She truly talked like she knew baby had Down Syndrome.  She made one comment that particularly irked me about the heartbeat.  After finding it with doppler (which is sometimes difficult at 14 weeks) she said, “well, its a great thing when you can find a heart beat with THESE babies because the longer they have a heartbeat in utero, the greater their chances of survival.” 

WHAT?!!!!

Needless to say, I was a basket case all day on Monday.  The tears started in the parking lot the moment I left her office and I cried ALL DAY…for hours!  I can’t even imagine how much cortisol was coursing through my veins, but it couldn’t have been healthy for baby or me!

Incredibly enough, I had signed up for a 3-day parish mission retreat through our Catholic church.  Although exhausted from all that crying, I knew I needed to go.  Chris kept the kids at home so that I could go and meditate by myself.  It was the best choice I could have made.  God works in mysterious ways.

The gist of Day 1 was this:

“God made us because God loves stories.”  --Elie Wiesel

Basically, our entire lives are made up of a series of stories…stories, that if we choose to believe, are CONNECTED  to GOD’s Story for our life.  This gives us HOPE which is a cause for CELEBRATION which in turn, TRANSFORMS Our Story into God’s Story for our life. 

Obviously, being 40, my life is made up of many different stories, but as I sat and listened to Father Lou, I was thinking about my story of infertility.  It has been my cross to bear, yet, if I believe that God is always with me…even during my saddest, lowest, most anxious times, than I see that my story is really GOD’s story for my life.  And in the end…my story (or at least this Chapter of my life’s story) ends with triumph over the cross with the birth of Mary Catherine, Benjamin Paul and Baby #3. 

And, if as Christians we realize that all that GOD has created is good, than even this little baby, if it in fact has Trisomy-21 or Down’s Syndrome, is the FACE of GOD and will not be a cross to bear, but rather the gift of GRACE to our family.

And that is my story.  May God bless you each and every day as you live out your life’s story which, if connected, is God’s Story for your life.


19 comments:

  1. Valerie,
    I understand very well. My niece has down syndrome. My prayers are with you and I am so thankful that you are turning to God in this. It is really the only way. I know that your board will become blown up but if you get a moment and would like to talk, please email me. Much love to you, Cherie

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  2. Oh Valerie. I was so sad to read this post. Not because God may be giving you a different gift than you expected, but because of the heartache I know you are going through during this time of uncertainty.

    I think I'd like to e-mail you, if that's alright, about a personal experience that may give you some hope and light.

    If so, send me an e-mail, whenever you're ready, to ebailey517@yahoo.com and we can chat a little more privately.

    Praying for you and your family during this time. I already feel such a connection through our blogs! :)

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  3. I will be praying for you, Valerie during this time of not knowing and accepting whatever God has given to you and your husband and family. While I pray, I will remember that the doctors aren't always right and that even when they are, God always knows what's best. I so admire you for your strength and courage and knowing upon Whom you can trust...
    XOXO
    Joni

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  4. I am not very happy with them treating you like your baby is downs with they don't KNOW. Hunny those tests have a VERY high false positive rate. I know you must be so scared but do not let them make you think your baby does in fact have downs when you're not 100% sure yet.

    I hate that you have to go through this though. I know it's scary, I can't even imagine. Just know that IF your baby has downs, you will get through this. He/she will be loved and live a wonderful life with you two as their parents.

    I'll be thinking of you and praying for you. *hugs*

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  5. I also wanted to tell you that my nephew was born Sept. 11th 2009. They were told from ultrasound that his head was too big for his body and his arms and legs were short and that he most likely had downs syndrome. He was born WITHOUT downs.

    Hang in there, I'll be thinking of you!

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  6. Valerie, I know exactly how you were feeling. I did not get that triple screen test with Jacob. I did not get that test with any of my kids because it just truly is a screen and nothing else. But, I did get an ultrasound with all of my kids. With Jacob, I even went to the high risk ultrasound, which now I wish I had not done. Because all it was was another screen for markers for Downs. At my age, I had a 1/80 chance for a downs baby and because Jacob had a bright spot on his heart called calcium deposit, that increased his chances to 1/40. I went through all of the same feelings of being scared and crying and I finally came arrived at the peace that the Lord brought my way when I realized that no matter what, I loved this baby and he was meant to be and God would see us through being parents to any child that He gave to us. And actually, I had a real peace that He was just fine!! Mar 11, 2009 proved His perfect health as he was born a beautiful baby boy. I am praying that you continue to feel His comfort and peace as you go forward in this pregnancy so that you can experience all the joy that God intended for you in this blessing that He has given you. I believe that your baby is healthy and fine! Like you said, even according to the assessments, you have a 94% chance of a healthy baby. That is a pretty good chance, I think. :)
    I will be praying for you,
    Christy

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  7. ooops! I meant to say Mar 11, 2008. Jacob will be two this next month.

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  8. Hello--
    Some Doctor's bedside manners lack alot! I'm so sorry that you were treated that way and I would say something to your regular Dr about the comment.
    This phase in your life is hard enough,you don't need any doom and gloom!
    WE wish you and Chris ALL the best ans you continue down this road.
    Prayers will be said for everyone.


    Melinda

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  9. Oh, that just irks me how you were treated. I bet your baby will be just fine! My little sister was offered these tests last year, she is 38 and she refused. I am so glad she did. Chloe is about the most gorgeous baby I have ever seen! Hang in there, Cindy

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  10. I have a son with Down syndrome. He just turned one. I can tell you that this year with him has been the BEST year of our lives! God truly is good and we are so blessed that He chose Simeon to be part of our story.

    I really hate prenatal testing. It just causes needless worry among women. Our odds were 1:20 based on u/s markers and age (no bloodwork) and it was sooo much nicer to hear the words "Down syndrome" when I could actually look into his sweet little face.

    You can visit my blog to read our story and see his pics. Might put your mind at ease.

    Btw, I have read the stories of many, many women who've had high odds based on bloodwork alone and they are almost always wrong.

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  11. God is good...ALL the time! All the time, GOD IS GOOD! Keep looking to Him for He has the perfect story for your precious family. I am so sorry about how you were treated. Some doctors can be so cold, and I am so sorry you had to experience such negativity! God has the perfect baby for your family, however it turns out. You are in my prayers sweetie.

    Hugs and Blessings,
    Rebecca

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  12. Oh Valerie,

    What a difficult time. That OB appointment sounds horrible. Just wrong.

    I am glad you are turning to God on this one. Only he knows your baby. He sees the little on inside of your womb even at this moment.

    He gave you this little one and will walk you through this pregnancy. He will bring you a peace that is unexplainable. I am glad you are putting it in his hands.

    I hope your nausea is under control my friend.

    In prayer,

    ~Julie

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  13. Wow, Valerie, I can see why this has been a tough week for you. Your post brought back some memories of what I went through with the testing nightmare when I was pregnant with the 2nd twins.

    I was also considered AMA and my OB strongly urged me to have testing done. But I knew the chances for a false positive was high, esp because I was carrying twins. Even so, I went ahead with the testing because somehow I felt like I needed to for peace of mind.

    Oddly enough the blood work came back just fine BUT at my next appointment with my OB, she mentioned that Garrett had a soft marker for Down's. I think they call it "sandal toe" or something like that. Basically, there's an larger than normal space between the big toe and the toe next to it.

    She referred us to a genetics counselor to talk about an amnio but after much prayer, we decided to refuse the amnio and any further blood work.

    For some reason, I felt at peace about it. I was scared to a degree but the more I prayed about it, the more I realized that God would get me through anything he brought me to (just like the saying goes). No matter if Garrett had DS or not, God sent him to us for a reason and we'd love him no matter what.

    God will get you through this, which you already know. Just keep relying on Him for strength and peace!!

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  14. Hi Valerie,

    I stumbled onto your blog this morning. Nice to meet you and congratulations on your pregnancy!

    By my third baby, I was sick of being pressured into testing so I declined everything but an ultrasound. I knew that what you say is true, God was writing the story.

    He gave me a beautiful baby girl who is the light of our lives. And I am reminded everyday by her that He knows what He is doing and He is always right.

    He will bless you with this child, one way or another.

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  15. Those people I´ve known that have Downs syndrome has been wonderful!

    I know that they can have a lot of different problems because of this and that it takes a lot of extra work for their parents. But it doesn´t mean it has to be so.

    If Your child would have Downs You will still have a wonderful new person in Your life :-)

    Take care!
    Christer.

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  16. Will be praying for you and your little one, Valerie. I trust that everything is going to be just fine.

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  17. Bless you Valerie, you have had a time of it. It sounds like you have had some very insensitive people to deal with. I know whatever path God chooses for you, you will follow it with grace and dignity and that you will love and accept this baby no matter what.

    Having said that, I have a feeling all is going to work out well and your baby is going to be just fine, I think Doctors just err on the side of caution to cover their own behinds sometimes. God Bless, you'll be in my thoughts and prayers.

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  19. Aw Valerie, I'm so sorry for all the stress you've been going through lately. I didn't see this post until now.

    Is it possible to switch doctors? Sounds like your OB isn't the most positive one out there.

    With the ultrasound you had, was there any indication on the sex of the baby, or are you leaving it a surprise?

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Thank you so much for taking the time to comment. Your kind words are appreciated! As Mother Teresa said, "Let us always meet each other with smile, for the smile is the beginning of love."

Valerie