Sunday, December 27, 2009

Ways to Frighten a Hormonal, Emotional Pregnant Woman

*I'm posting twice in one day as I didn't really want to combine this post with our Christmas post. So don't forget to check out all the pics of Jillian's holiday fun below*

I'm in an emotionally precarious state these days. I can't think of the last day that went by that I didn't cry. I cry over movies. I cry over the local news. I cry over television shows. I cry over commercials. I cry over books. I'm a hormonal basket case. And my ultrasound last Wednesday nearly put me over the edge.

As I mentioned before, we went for an ultrasound at the maternal fetal medicine clinic (rather than our OB) because Hayden is not a photogenic baby. She prefers hiding at the bottom of my uterus behind the placenta to getting her picture taken. The same held true at the MFM clinic so much so that they even hauled out the transvaginal wand to get snapshots of her brain since it was crammed up against my cervix. This is clearly a stubborn child.

The hour plus of trying to photograph my child I could handle. What I couldn't handle were the words "marker for downs" and "marker for Trisomy 18". They said that they thought my OB sent us in because the nuchal fold seemed to be measuring a bit thick (5 cm) and at their office it was measuring between 5-6 cm. They prefer to see it less than 5 cm but that measurement is really only valid until 20 weeks and both ultrasounds were taken just past that mark. Plus some doctors consider 6 cm the cut off so really the measurement is borderline. There was also some other brain part that was measuring at the upper edge of acceptable, which could be a marker for Trisomy 18. However, usually you would see other markers of that condition and none were found. Plus my nuchal fold testing and blood work from the sequential screen put Hayden's risk at both conditions at 1 in 20,000 so during the ultrasound I wasn't really too worried.

But then they stuck us in a room with the genetic counselor. She was nice enough for sure. But somehow sitting in that room and listening to her throw all these numbers at us sent me over the edge. She said that a marker like this would typically increase the risk of either condition 20 fold (and really since both measurements were borderline abnormal maybe even less) meaning that the 1/20,000 went to 1/1,000. She then told me that amnioscentisis was an option if we wanted to know for sure. But of course when I pressed her on the risks of that procedure, she told me that the chance of miscarriage was also 1/1,000. I told her that I didn't want to do the amnio since it didn't make sense statistically, but of course I was in tears at that point and she pressed me about whether I felt comfortable with that decision. In truth, I really felt like they were steering more towards the amnio...this is the U.S. after all. The more tests and procedures the better, right?

Anyhow, Jeramy and I decided not to do the amnio. Like I said it didn't make sense statistically, and I don't think we would decide to terminate the pregnancy based on the results. Plus as I got to thinking about it more, at 1/1,000 the risk for Down's is not even elevated over the normal incidence of the condition, and they certainly don't recommend amniocentisis for every pregnancy. I feel fine about this now, but it was not a good feeling to be sitting in that room working about a .01% risk and being pressed to make a quick decision.

I do go back in a few weeks for a follow-up ultrasound to measure the part of the brain that was borderline as a marker for Trisomy 18. They want to look to make sure it is growing at a normal rate. And tomorrow is the fetal echo. For the first time ever, I find myself wishing that I didn't have to do any more ultrasounds. I'd rather close my eyes, not think of the risks (which are always there in any pregnancy) and imagine a healthy baby girl at the end of this.

15 comments:

Amanda said...

You poor thing! How horrible for them to scare you so much over borderline things!!! And no matter what, it's horrifying to talk to a genetic counselor...ALWAYS. I'm so sorry.

I'm praying for everything to be resolved at the next scan...for them to tell you all the measurements are completely within the preferred guidelines!

When I was pregnant with the boys there was one u/s where they were suddenly measuring ahead of where they should have been and they appeared to have too much fluid. The genetic counselor came in and talked to me and mentioned scary things. The next scan they did everything was completely normal!

Sunny said...

Stupid tests! I know they are valuable in many cases, but they also cause SO much needless worry. I am sorry you have to go through this -- I really feel like everything is going to be just fine. Please keep us posted, and I'll keep you guys in my prayers.

Barb said...

You have every right to be upset. :(

Loved Jillian's photos.

Barb said...

p.s. hormonal/emotional is me NOW. Somehow I escaped it through much of the beginning, but now I'm making up for it.

Roadblocks and Roller Coasters said...

I definitely know how scary this is for you as we had a similar scare with Trisomoy soft markers for Jasper. I will be thinking of you, praying for you and just hoping you get some peace between now and your next scan. ((many hugs))

Kelly said...

OMG!!! Girl, I've been there. No matter what the outcome...talking to a genetic counselor SUCKS!! The whole "what if" sucks too.

Let me tell you more details about my pregnancy with Lily to help reassure you that Hayden is going to be a healthy baby girl. I can't believe they would offer you an amino when your numbers aren't even abnormal by their standards?! WTH??

So with Lily, my Quad screen came back SEVERELY positive like 1:40 chance of everything. So that's why we did the Level II u/s. When doing the Level II, they found she had a cystic hygroma (fluid on the neck and in her case, whole body). Lily had so much fluid on her, they knew it needed to be removed ~if~ she made it to 24 weeks. They were also pretty certain that she was not going to make it that far along because of the fluid. The perinatologist said she was 99% sure it was Turner's Syndrome but wanted to confirm it with the amino. Basically Lily didn't have hardly any chance of surviving so we decided to go for the amino. Now with Makenna, she had/has 1 kidney slightly larger than the other and has since her 20 week u/s. We did a Level II just because of our history with Lily but when the perinatologist noticed the 1 kidney was borderline big (not abnormal just slightly bigger than normal) he offered us the opportunity for an amino. We declined and he immediately said that was a good choice but he does have to offer. He wouldn't have recommended doing it though in this situation.

So there you go! I've had WAY too much experience in this department! My gut feeling is Miss H will be very healthy and happy. HTH:)

PJ said...

Here from Lost and Found... It sounds like maybe the timing for your NT Scan and the fact that she's sitting behind the placenta, etc. might be a big part of the problem.

I hope that when you go back they can rule out the trisomy thing.

It all sounds VERY stressful. I think you're definitely due some pampering. :)

Jennifer said...

I hate these tests...they are so wishy-washy in so many cases! I hope you don't stress over it too much...the follow-up u/s should clear things up for you. I wouldn't do the amnio either.

Merry Christmas to you and your family!

Birdee said...

Oh Jenn, I had no idea you were going through all this ((hugs)).
My tests came back to be like 1/180 for Downs. My baby is PERFECT!!
I hope your future U/S all turn out okay, and I hope you find peace to just enjoy your pregnancy.

K @ ourboxofrain said...

I'm so sorry for all the stress and uncertainty. I hope the echo went well today and that the next ultrasound helps resolve the uncertainty and shows Hayden to be a healthy little girl. But even if you don't know any more until May, you and Jeramy and Jillian get through the waiting together. Thinking of you.

Katie said...

I am so sorry for the uncertainty and fear. I am praying for you.

Tally said...

Here's to a healthy happy baby and a wonderful future! (and you SO deserve some pampering after this visit) I hope things went well with the f/u u/s...

JamieD said...

Oh, Jen! I am so sorry for all you have been going through. Being a emotional basket case is completely understandable! It is so frightening to listen to them carry on about numbers and measurements and statistics. I agree - the amnio didn't seem to make sense.

I'll be thinking of you as you have your ECHO and upcoming u/s. If you need an ear, I'm always here!

Nicky said...

Ugh, Jen, catching up on posts. So sorry that you're dealing with all this uncertainty! I'll be thinking about you, and hoping for the best. As your rational side has noted, the odds are strongly on your side.

Cheryl said...

Hello!

I found your blog while blog hopping and thought I'd post a comment...

I just had a baby two months ago. I am 42 years old and at "high risk" for having a baby with "issues" because of my age. While doing the ultrasound at 18 weeks they noticed Choroid Plexus Cysts in my baby's head...which in themselves are not harmful, but are a "marker" for Trisomy 18. My initial blood tests came back negative for any issues, but with this marker (no other issues were seen except the cysts) my chances of having a baby with Trisomy 18 and other issues were about 1/100.

I too opted out of the option of an amnio for fear of losing the baby. At 30 weeks (12 weeks later) I had another ultrasound and the baby's cysts were gone.

She was born in October and is very healthy and happy and normal. I had so much testing and ultrasounds and, like you, wished that I didn't have to go through all of that.

I will pray for a safe pregnancy/delivery and a healthy and happy baby :)

With love and hope,
Cheryl