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Tuesday, October 23, 2007

My Story

In my post titled, "Guilt" I wrote about my thoughts, feelings, and emotions I had after Kayla was born and I knew she had Down syndrome.

I haven't written about going through my pregnancy with Kayla, finding out, and knowing there was a possibility she would have Down syndrome. So here is my story (which I actually wrote when Kayla was 15 months old)...

Early on in my pregnancy I read an article in a magazine about prenatal testing. It was the first I heard of this and the article talked about how these tests usually end up causing women more stress then they were worth. They were screening tests and can't give you a definitive answer; you still need a CVS or amnio for that. After reading that article I told Joe I was against having this blood test because I didn't want to go through that stress and he said "ok whatever you want to do." We talked a little bit about Down syndrome, but it was more like one of those things you think "that happens to other people."

Then came the time in my pregnancy when I had a regular OB appt with Dr C and he mentioned the AFP; I said "my husband and I talked about it and we're not going to do it." He said ok and that was that. My next appt was with Dr S (whom I never really cared for) and he brought it up to me; I again said I wasn't interested and then he started questioning me, telling me things (I can't remember what he said) but I felt pressured with him. He gave me pamphlets to read and filled out the lab work "just in case you change your mind."

So then I went back and forth on whether to have the AFP or not; I agonized over whether it was worth it, did it matter...I questioned all my pregnant friends (in the group of ladies I knew 15 babies were born between Jul 02 – Jul 04. There were 7 pregnant the same time I was) whether they had it done and why.

I finally thought oh what the heck, I might as well just so we can be prepared if we need to be.

Then I got the “call.” It was on a Friday near 5pm; and of course Joe wasn’t home. I remember Dr S saying the results of my AFP came back as increased risk for Down syndrome. I remember the sinking feeling in the pit of my stomach, I remember feeling hot and flushed but trying to keep it together. I wasn’t going to break down on the phone w/this Dr (remember, he was he one I didn't care for). He was making it sound urgent that I had to see the perinatologist on Mon - problem was she was in Albuquerque (3 hrs away). I knew she came to our town every other Thur and asked if I could see her then (6 days away) he kept stressing I needed to see her ASAP. I told him I had an appt on Mon w/Dr W for the routine u/s and I would discuss it with him. I did ask him if the test showed any kind of #’s (I don’t know what I was looking for – just something concrete that might make me feel better) He told me no, just increased risk. (Why he didn't give me the actual numbers I don't know).

As soon as I hung up the phone I just hugged my belly and sobbed. It was a scary feeling to be receiving this news. When Joe came home about an hour later he found me in bed, in the dark, and knew immediately something was wrong. I could hear it in his voice as he asked “What’s the matter?” I managed to choke out, “Dr S called and that stupid blood test came back positive for Down syndrome!” (Yes I realize it wasn't actually "positive" but that's how I felt at the time). He just held me and told me everything would be ok; reminding me of all the "false positives" (which again, aren't really false positives because these are screening tests, not diagnostic).

We discussed the urgency of going to Albuquerque and agreed there was no rush because we weren’t going to do anything anyway. We had discussed what we would do with the results, never imagining we would actually get those results. We had said something to the effect of “It’s not like we would terminate the pregnancy just because of something like Down syndrome… we can handle that.” But I also said there was no way I was having an amnio because I was scared of the risk of miscarriage. So we were going to have our routine u/s with Dr W as planned on Mon and go from there.

At the appt Dr W never mentioned the blood test … he did all the measurements then we were done. He said everything looked great. I said, "so the measurements are all on track?" (I was hoping my dates might be off causing the numbers to be wrong). He said, “Yes.” I said "Dr S called Fri about my AFP results." Dr W finally looked in my charts for the results. He said it came back as 1 in 88. I remember gasping…1 in 88?! My #’s are supposed to be a lot higher than that for my age group; it sounded so bleak. He explained that was almost a 1% chance. He said if we’ve already decided we weren’t going to do anything then we could wait until Dr R (perinatologist) came on Thur. She would do a level II and get more detailed info on the baby and look for other markers. Joe kept focusing on the 1% which sounded good to him, but I thought 1 in 88 sounded so low from where it should be. Dr R had no available appts so we had to wait 2 wks to see her. We could have went to Alb but we didn’t see the point. I do remember talking to the geneticist in Alb because she doesn’t come to town w/the specialist. I don’t remember a lot of what she said; I don’t remember her painting a bleak picture or pressuring us to terminate.

We finally saw Dr R and I was so excited to see our baby in 3D. Dr R explained an u/s can only detect Ds about 50% of the time (and again it still wouldn't be diagnostic even then) and I was far enough along in the pregnancy where certain markers weren’t effective anymore. She did say the good news is there is no structural malformations. When I asked what that meant she started talking about bowel, liver, kidney, stomach, lung, heart problems that affect a certain percentage of babies w/Ds and our baby didn’t appear to have any problems. She couldn’t decrease the risk of Ds though. We could do an amnio right there or schedule one for later as that would be the only way to know for sure. I still didn’t want to have one. We talked about getting one later in the pregnancy; like around 32 wks, so there wasn't a risk of miscarriage. We went home thinking well if the baby does have Ds at least there aren’t all those problems with the heart etc; we can handle this right? We had a few more appts with her to measure growth; she wanted to make sure the baby stayed on the same growth curve.

We never did the amnio. I was scared of the results. If I did this test and it came back positive, there was no turning back. I couldn’t go through the rest of my pregnancy hoping and believing in the end everything would be alright. As long as I didn’t get positive confirmation there could still be that chance the baby would be ok. If I got the test I couldn’t go to bed every night praying “Please dear God don’t let my baby have Down syndrome. Please let my baby be ok.”

My first instinct was to jump on the internet and research everything I could find. But I couldn’t do that either because that was like admitting it was a possibility and I didn’t want to go there. There would be no reason to do all the research and reading because I wasn’t going to need it right?

Delivery day (throughout all those u/s we never found out if we were having a boy or girl, we both hoped for a girl though) - I remember after pushing her out then looking down and seeing we had a little girl the same time I heard Joe say ‘We have a daughter!” How elated I felt that it was true; my little girl was here! They suctioned her and put her on my belly and started wiping her off…then things happened in a blur. I stared at her face, at her eyes … and without a doubt I knew.

(What happened next is all in my Guilt post) I kept asking Joe, “Can’t you tell by how she looks?” He said he’s never seen a baby w/Ds before so no, he didn’t know what I was seeing.

I was afraid I wasn’t bonding w/Kayla because I didn’t know how. She wasn’t the daughter I was "supposed" to have. I didn’t know how to voice my feelings to anyone because I was supposed to be strong right? I just gave birth to my first child and this was supposed to be such a happy occasion, why was I crying? I regret I didn’t enjoy her more those days in the hospital. I regret it wasn’t a happy time. I regret that I even thought she shouldn’t be named Kayla. I regret that I didn’t even know if I loved her. And oh how hard that was to put down in writing. But she was my child, my first born, my daughter. She was going home with me the next day and I better get to know her. As much as everyone else was waiting for the blood test, I knew in my heart what I was going to have to get used to.

And now things aren’t so scary. We go to MOPS, Kindermusik, playgroups. She is accepted by everyone we meet. She does everything my friends’ babies do. She plays, laughs, smiles, gives hugs and kisses, signs eats, walks. (remember I originally wrote this when she was 15 months old, so there is a lot more that she does now LOL) What was I afraid of? I look into her “big blueberry eyes” (as grandma calls them) and fall in love all over again. This is what being a mother is. She has already taught me so much.

15 months later I have the daughter I was supposed to have. I have a love greater for her than I ever could have imagined in that hospital room. I am so glad she is KAYLA and not another name, because Kayla is what we had decided on for a girl; and Kayla is who she is and who she was supposed to be.


Anonymous said...

Oh, you have me crying! Happy tears. And a few tears from my own regrets, too. But mostly, proud tears. We have such beautiful children and we're so darn lucky! Your post is beautiful, Michelle! Thank you for writing and posting it!

Jen said...

What a beautiful story for Kayla...the first time I came to your site, her BEAUTIFUL BLUE EYES captivated me....she is so pretty. I couldnt quit staring at her. You are so lucky to have her and I know you know this.
On another note.....when they asked me to have that stupid test.. I declined....I told the military Dr....it doesnt matter I will love her either way.....I already did.
Bless you and your husband for raising the perfect little girl.

ChupieandJ'smama (Janeen) said...

Thank you so much for sharing this story. You brought tears to my eyes. You are such a good and loving mom, Michelle. You are blessed with Kayla and she is blessed with you and Joe.

Leanne said...

your honesty completely amazed me. I didn't bond well with my second adopted infant... that was heart wrenching... a year later things are so different (very,very good). I will remember your story as I prepare for my Level 2 ultrasound next week. I'm in a "higher risk" category for a baby with spina bifida...so its been a lot to process.
Thank you so much for sharing!

Anonymous said...

love you Meesh. This is a beautiful post. I had tears in my eyes too.

Anonymous said...

Michelle, Kayla knows YOU REALLY, REALLY LOVE HER!!! AND KNOWS HER DADDY DOES TOO!!! that is all that matters now... :) love Mom /grandma

camille said...

Wow, thanks for that post. I really appreciate your honesty. My feelings about our situation are validated when I read your posts. Thank you!!

Barb said...

You put a big lump in my throat, too, Michelle. This is so heart wrenching, so honest and they way you've expressed the emotions you went through, I couldn't possibly read this and not get a lump in my throat.

How blessed you are. And Kayla is even more blessed to have parents who simply love her beyond all reason, as all us moms and dads love our children.

This is one of the most beautiful things you've ever written. It really touched me to my very soul. Babies are babies. Ds or not, babies are simply put here to be loved. And you do that very well, my friend.

Julie said...

What a beautiful testimony of love!!
Thank you for sharing that with us, Michelle.

A Captured Reflection said...

Thank you for sharing from the heart. What a journey, my goodness. Now we read and see beautiful pictures on your blog of a wonderful girl, full of character and life who has many wonderful and glorious adventures.

Cindy-Still His Girl said...

I loved reading this, Michelle; getting a glimpse of those days; of your heart. Thank you for posting it; for your honesty.

Tammy and Parker said...

What a simply beautiful story. Thank you so much for sharing this.

jennifergg said...

This is such a BEAUTIFUL post. Truly. And guess what? We had the AFP and it came back "normal". So we really do get the children we were meant to have, and Kayla is so lovely and like you, her "big blueberry eyes" make me fall for her again and again.

Thank you for sharing your experiences as her mom...she's terrific, and so are you, and we are ALL lucky to have both of you!

Michelle said...

What a beautiful story!
We had the screening test, and it came back "negative" so I never had an amnio - I was too afraid of miscarriage, since I had two very active babies. We had monthly u/s, and still didn't know that both girls had DS until they were born.

Kayla is BEAUTIFUL. Just stunning. I look forward to reading your blog everyday, and seeing her pictures. She always makes me smile - it gives me a glimpse of what Ruby may be like when she's older.

tracey.becker1@gmail.com said...

Oh sweetie. What a lovely, truthful story. I felt your pain, and guilt. I'm SO glad you seem over it. We all want our babies to be "picture perfect" but that doesn't exist. All of our children are different. Kayla's differences were just noticeable from the get go.

Thank you for sharing that story...

Karen said...

Thank you for sharing. It's hard to voice those feelings of fear and confusion. But you've done it beautifully. Kayla is blessed to have parents who've loved and accepted her just for who she is.

Kerry said...

What an amazing story... thank you so much for sharing. It's so hard that at a time when you should have only felt joy you had all these other feelings mushed around in there. But you knew she was your girl.... :) She is a lucky one for such a great mom :)

Anonymous said...

awww how wonderful how so so wonderful. You are amazing.

Anonymous said...

Michelle, thanks so much for sharing your story in this post. It was awesome!

Dori (Aviva's mommy) said...

Thank you for being so honest...looking at how lucky Kayla is to have such loving parents.


Julie said...


This is the first time I have read your blog. My son Noah is 21 months, he has Williams Syndrome. I appreciated your honesty. I have an acquaintance that had a baby named Noah also he is a few months younger than my Noah and has DS. I hope she visits your blog. You and your daughter are inspirational. Kayla is beautiful.

Type (little) a aka Michele said...

Michelle, what a beautifully human story that was. Good for you for facing up to your feelings and being able to be honest about them, because if you weren't you could never get past them.

Shelley said...

What a beautiful post Michelle - yes Kayla is just who she is supposed to be - a wonderful, exceptional and 'normal' little girl in very cute packaging!

Anonymous said...

Dear Michelle,
Your blueberry girl is so perfect. You do not know me ,but I read your blog very often. Tears came to my eyes when I read your your post.You are a great mother to Kayla and a great example to all moms on what it takes to be the meaning of MOTHER to our children. I have a two year old and I hope I can be as great a mom as you are! Please check out her blog. www.brendasfriends.com There are coloring pages for Kayla. Take care!

LJ said...

oh my goodness! you are out to make me cry on this wednesday morning....the paragraph about regret near the end...did me in!
i had those SAME EXACT feelings. I was scared to love the little critter that came from my womb for fear he wouldn't make it. I knew he was a sick little guy. I'd stare at his face and his eyes and I prayed that he didn't have Ds....now with all that he does have...I wish that was what he had and not what I deal with now.
****You are this weeks Tender Tuesday award recipient****
(I'll have the post up sometime today)

Anonymous said...

What a beautiful post. You do have the post beautiful and fun little girl. I always get such a joy hearing about her. She is the daughter you're supposed to have.

Melissa @ Banana Migraine said...

You shared your story so well Michelle!

Eden said...

YOu brought tears to my eyes, Michelle. Kayla will enjoy reading all of your posts when she is older.

Noel said...

That was beautiful. I can relate to some of the feelings you talk about. I knew there was something going on before Abi was born...too many tests to be nothing...and the day she was born I really knew that something was just not the same as with the other 3 kids.
Thanks for writing this down and sharing with us!


Cheryl said...

Thanks for sharing your story. She is such a beautiful little girl with those bright eyes and beautiful hair. You are very blessed. Enjoyed the pictures. God Bless!

Anonymous said...

It took me two weeks to come to terms that my daughter had Down Syndrome actually took cardiac arrest to wake up and realize I could handle this and its true she has taught me so much more in the four years than Id ever thought. We are soo blessed to have these wonderful girls in our lives! Great post!

Anonymous said...

Kayla is blessed to have you.



Snowflowers Mum said...

That was truly beautiful. I am an adoptive Mum with a daughter from China and expecting another referral for a SN child in the next few months. Your words are very helpful and reassuring to all of us who will be challenged and rewarded by parenting a special child.

I have to say, your daughter is not just beautiful, she is incredibly striking and her eyes are so pretty.

Mum to Piper
waiting for Paisley

Katie said...

Oh Michelle,
thank you for sharing your story.
I dont think i can add much to what has been said but i want to thank you, Joe and Kayla for enriching my life a little more with each post and photo you blog.
love to you all,
Katie xxoo

Susie Q said...

Tears...tears of sweetness and joy. Kayla IS perfect. Just as my nephew is perfect.
Your heart is beautiful dear Michelle. Kayla is blessed with you and her Daddy and you two are blessed with her.
Warm hugs,

Sue said...

No fair making me cry. What a wonderful post. Every Mom goes into pregnancy expecting that prefectly healthy bundle of joy. I find it hearbreaking that so many can't or won't accept anything less than perfection! You're amazing and Kayla feels that from you and Joe every day! Her smile shows how happy she is!

Anonymous said...

Yeah I don't blame you for passing on the testing. They wanted to do an amio on me when W.W. had complications at birth and turned out to be 6 weeks early. Your body is already stressed why add to it was my thought.

Wow, that was really impolite of the doc to pressure you. I'm also not so sure I agree with him telling you over the phone. I thought that was one of things they had both parents come in and then they talk to you about. I don't know...

I feel like your reactions to it all are normal. When W.W. was born, my husband got to hold him first then I held him for about a half hour before they whisked him of to the NICU because he wasn't breathing right. And I agree with you, the situation was different, but the bond wasn't there right away either. Where was the outflowing of love I thought I was supposed to have? I felt like everything about the experience of birth delayed it. It wasn't until we all escaped from the hospital and even with the oxygen tank trailing around with us everywhere did I feel the love I knew was there inside me.

Wow, I rambled off. Thanks for sharing. It got me thinking too. :)

Mayhem And Miracles said...

Michelle, I think your heart shines through in this post. I would never have known you felt thi way for a day or two. I would say your guilt could be put to rest. You certainly in no way show anything other than devotion and acceptance for Kayla. I love that I can say I've met her, and you, personally. You are such sweet girls and I believe God must have put you both here to add beauty to the world. :)

Renee said...

I have to admit, I cried through this whole post. It is so beautiful and touching. You are an awesome woman and Mom! Kayla is a beautiful and precious little girl. Thank you so much for posting this and for sharing yourself and your family.

Anonymous said...

Amazing. You are so strong & amazing for being open with the whole range of emotions that you went through.
I remember reading that Guilt post & just bawling for so many reasons. What a blessing Kalya is.

Tricia said...

Thank you for sharing your story about Kayla. We have a lot in common in terms of our "finding out it's a possibility" stories.

Unknown said...

Yes, Yes, Yes!