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…?

19 Weeks


Baby Newman ~ 19 weeks

Just finished my 20 week scan. It went really well. I was super anxious but now I’m not even sure why. It went exactly as I anticipated. Doctor said everything looked great. Baby was moving around a bunch but measurements all looked good.
He wants to see me back in 5 weeks because he wasn’t able to get the best view of the heart. Baby is facing my spine, so he had to look at the heart through the body. He didn’t see a physical or developmental issue, just wanted to look at it more.
He also scoffed at the second tri-screen (so did his nurse) but said that ultrasounds are not a good screener for DS. He said to wait for the MaterniT21 test or do an amnio to know anything for sure.

So…it went well! Baby looked awesome, measured a few days ahead and is overall a healthy little squishy!

Gender reveal party is in 3 days!! I can’t wait to find out!! 🙂

I ran to a resale shop to sell some pants that have been given to me and try to find a pair to replace them but no luck.
Now I’m eating cold pizza and looking at my u/s picture. hehe

What a Week…

The last few days have gone by quickly and for that I am thankful.
Monday I coasted through the day Christmas shopping and running errands only to get a surprising phone call- Dr. H. I say surprising because I honestly didn’t expect him to call me until Tuesday or Wednesday. And since I was out at busy places shopping, I didn’t hear my phone.
His voicemail left no indication of whether his news was good or bad and I didn’t hear back from him until nearly 8pm. I was fine until that call. Then I was a nervous wreck wondering what he was going to say. Turns out it was for nothing- he spoke with his genetic counselor and there is basically nothing she can do with my old bloodwork. It’s already been processed and she would recommend the following in this order: MaterniT21 test, 20w scan and amnio.
I then called everyone I had connections with to try to have my bloodwork set up for Tuesday. It just wasn’t possible. So I had the bloods done on Wednesday. Wednesday was rough. You would think the waiting of Tuesday would have been worse (it did suck) but Wednesday was just a bad day.
I waited for over an hour for bloodwork, had to pay $235 for the bloodwork, and then had to spend the rest of the day on the phone with the lab, with insurance and with my doctor’s office.
Basically, the test isn’t covered under insurance. They are out of network and the test is expensive. But the lab doesn’t care. They won’t make anyone pay more than $235 for the test reguardless. But when I tried to pay for my labs, I was supposed to have a carbon copy of them so I could give them my reference number. My doctor’s office gave me nothing. Which then meant tons of phone calls. My doctor doesn’t have a direct line. So I couldn’t just call his office to get the number really fast. I also live an hour away from the office.
I have my doctor’s cell number, but I figured this wasn’t a situation worthy of using such a tool. So I pretty much left messages for everyone I could and the only people who didn’t call me back: my doctor’s office.

ugh…
But I worked something out with the lab and paid them. So now we just wait.
Originally I was told my results would be back Monday or Tuesday, but then my nurse informed me that it takes 8-10 business days. And since these next few weeks are pretty much considered holiday time, who knows when my results will return. First week in January? Maybe.
So now more waiting.
To say I was an angry hormonal pregnant lady is an understatement.

EDIT: The longer I wait for the test the more information I am finding on it. Apparently it was released around October of this year and I am lucky enough to live in one of the 20 cities they are offering the test to.
You can only get the test by doctor referral and it is currently not covered by insurance.
IF you have insurance, the lab will only require you to pay $235 and takes the responsibility of remaining bill. If you do not have insurance, it costs around the same as an amnio- $1,900.
The test has about a 98-99% accuracy rate for detecting DS and may lead the way for the testing of other abnormalities.