DS

I had a dream 2 nights ago that we got these exact results…the doctor called to tell us our baby has DS.
I woke up crying several times in the middle of the night but quickly forgot my dream by morning.
Funny how reality can make you remember something like that.

On Sunday Barry and I were at church and the speaker challenged us to ask God what we needed to focus on for 2012. He told us to be silent and let God speak to us. I’m not someone who feels God directly speak to me…in a sense. But I believe God speaks to us all in different ways and while I “heard” nothing I felt specific convictions about my life. Betterment convictions if you will.
But Barry heard something. A very real something. He heard the words “light bringer” in his head. He made the comment to me later that he was scared because he didn’t know what it meant but I immediately responded, “I think I know what it means…”
I told him I believed it meant our child would have DS and be a light of hope to others because of our journey in faith.

Dr. M from my OB’s practice called me this morning around 9:15 to tell me the MaterniT 21 results.
It was difficult to process. And while I was anticipating results today I had made myself so busy his call caught me off guard.
Basically the test does not give a ratio or precentage of the chance your baby has DS. It simply gives a positive or negative result.

Dr. M said my result was positive.
He said that I needed an amnio immediately and to leave work right away.
Amnio is the only way to know for sure and it will positively identify anything else that might be going on with our little man.
Dr. M commented that the materniT21 test claims a 98% accuracy rate so that it is likely more accurate than the tri-screen but hasn’t been tested enough to rely on completely. So there is a less than 2% chance that our son does not have DS.

My amnio experience:
The thought of one is scary for sure. I didn’t know if it would hurt or how I would feel afterwards, if my baby would be injured or how long the results would take.
The MFM doctor spent more time looking at Baby Newman than preforming the procedure.
He re-measured the baby’s anatomy (bones, heart, skull) and found him to have zero DS markers (although 30-50% of DS babies have zero u/s markers). He is also still measuring around 4-5 days ahead. He tried to look at his face in 4D but his arms were covering it up.

Then the procedure. I was so worked up and had already been crying for hours that he had to calm me down before he could do anything.
It was a quick sharp prick, some pressure/discomfort and then it was over. I felt a bit of uterine cramping afterwards but I was far worse emotionally than physically.
Also, I didn’t look at the procedure itself but I could hear/feel one tube that entered the uterus and then the drawing needle that slid in and out of that.
I did watch the u/s the whole time, though and I could see the needle next to my baby.

The needle left a little red puncture mark on my tummy but other than that, it was not an unpleasant experience. Now I get to be a couch potatoe for the rest of the day and try to relax.

Full testing results in 2 weeks with DS results by Thursday.
Baby is moving around happily letting me know he is ok. 🙂

Here is what I will say.
I am terrified for my son. I am positive he has DS at this point but uttering the words will not be able to happen for a while.

The first time we were told we were at an elevated risk for DS I was devastated. I cried for a whole day and had come to an awful decision: if there is something wrong, we will not go through the remainder of the pregnancy. Its hard to even write that but it was what I had resolved to in my head with more hope than anything that my worry was for nothing.
That was a few weeks ago and while my fears are worse than they were before, I couldn’t possibly imagine ending the life of my precious son. I wake up just to feel him move around. I press my husband’s hands to my belly trying to let him feel a little kick or punch. This miracle baby has beaten the odds just by living. He was one of 10 eggs and 7 embryos that stuck with us. He was our “50% chance of success and a 75% chance of making it to 20 weeks. He is everything we have fought for this last year and a half and I love him so deeply already.
No. I can’t even fathom ending this pregnancy over DS.

Am I scared? Hell yes.
What will my life be like with a DS baby? What will his life be like (all I keep thinking about are the things he will never do…get married, have children, live independantly? Look like Barry or myself…) What will his health be like? Am I strong enough?
What did I do to cause this? Why are my children unhealthy?

So for now we wait. Again.
Mainly just for confirmation.
And then what…?

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8 Replies to “DS”

  1. The boy name Aaron means “light bringer” in Hebrew. (Hebrew spelling is Aharown) Ari is the Finnish version of the name. And Ori means “my light.” Stay focused on the positive for now, any excessive worrying could hurt you or baby “Oscar.”

  2. Ashley,
    I just “happened” across your blog and read this entry. I share the pain of miscarraige (3) and the experience of finding out about our son’s DS during pregnancy. I realise though that that does not mean I know how you feel. I am very aware that you will be feeling things I can’t understand or relate to. I just wanted to encourage you that God does understand and He is there, whenever, to comfort, encourage, challenge, and give you and your husband grace to face whatever lies ahead. Having said that, our journey with Davy (now 7) has not been all bad by a long shot! Parenting Davy has been like parenting any child in many ways, one day at a time and with lots of dependence on God! In other ways it is different though and I would encourage you to find a support group of other parents who know about some of these differences and can be a support along the ways. Try to enjoy the pregnancy and your little man’s first months. It is easy to get caught up in all the medical stuff and forget he’s your precious little baby. All the best and may God continue to give you grace for all He calls you to. Phil 4:19 “And my God will meet all your needs according to the riches of his glory in Christ Jesus. ”
    Ruth (in New Zealand)

    1. Well I am glad you happened upon my blog! 🙂
      I appreciate your comment and I am trying to remain calm and trust in Him as we process this information and wait for the results.
      Thank you!

  3. Hi Ashley….been following you throughout this and am sending you all my love. You are handling this so calmly (well at least in your blog), I am sure that you have your up and down moments. Sending you strength to see you through this.

    1. Thanks girl! 🙂 I appreciate it so much.
      In the end, my husband and I do not want to end a life. We created this little boy and we want him more than anything. I think the decision would be more difficult if I didn’t know him, but I do! I feel him every day and I know my precious little one.
      I know that God is in control in the end and I am just trying to bend to His will…however gracefully or ungracefully as possible.

  4. Hello! I’ve been following your journey and you are a brave woman and God knows your heart. He allows things to happen, but we need to trust in Him. The final word is not said yet, God is still performing miracles so don’t let your faith go down. Enjoy your pregnancy, keep trusting God! Remember this is your little miracle and God is in Control!

    Isaiah 40:31 / Luke 1:37

  5. your last lines, your worries…are the same ones that went through my head. but they are unfounded worries. it’s amazing what love can do. once you see his face, nothing else will matter. he will be your child first and down syndrome will always be a distant second. while he may not have children, he will have love. he will live his lift to it’s fullest. you will not have to worry about him wasting it. and i hope he is a crazy dancer like our rachel.

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