/ The RE's Muse: Partly cloudy skies with a side of hope (updated)

The RE's Muse

After 4 years of infertility, 2 surgeries, 1 miscarriage, and 19 months of high risk pregnancies, hubby and I now have two little women in our lives--one a toddler, the other not far behind. Buckle your seatbelts, it's gonna be a wild ride.

Friday, January 28, 2005

Partly cloudy skies with a side of hope (updated)

Some days, and we all have 'em, are tougher than others. Yesterday was one of those days for me. But you fantasic, wonderful, generous women helped make it a bit easier. Thank you, each of you. I know I've said it before when you've so generously given of yourselves, but gratitude never gets old.

A big hearty kiss and thank you also goes to my SIL--the physician assistant (PA) whose praises I have sung on this blog before. She sent me the following (among other very useful bits of info) and it raised a red flag immediately this morning:

Women with a false-positive trisomy 18 screen were heavier (175.6 +/- 43.8 lb versus 159.9 +/- 37.9 lb, P < .001) and younger (29.7 +/- 6.5 years versus 32.3 +/- 6.5 years, P < .001) than women with a normal multiple-marker screening test, but were not at increased risk for pregnancy complications.

Hmm...this made me go look at the test results (which I had the OB's office fax to me yesterday afternoon--so I could dissect the shit out of them and google myself to death). The results showed my weight as 140--140! I tell you. Ha, a number I've not seen since high school...scout's honor. So today I called the nationally known biotech corporate giant lab that performed the test to ask if an incorrect weight would skew the results. And you know what? It most definitely will! Holy mother of g-d--what do you know?! The lab said that if I would have the referring physician call them to correct the data, they could recalculate the risks again using the corrected information--something they assured me would take a few hours at most to do and it could even be done either by the end of the day today or first thing Monday.

And we're talking a bit difference in weight (okay, I'll throw this out there since we're honest with one another in this blog world--a 43 pound difference in weight!--and before you think I'm a giant fat ass, know that I've put on 16 pounds so far in 17 weeks of this pg--yikes! And even though the OB says I look great, I don't know if I agree. In the meantime, I prefer to refer to myself as pregnant with a side of chunky.)

So this afternoon, I called my OB's nurse and pointed out the error in weight to her. And yes, she agreed, such a large discrepancy would equal a wonky result and she was so sorry that this had happened--she apologized for the fear it must have caused me. She also said they had received three test results back yesterday and that she had gotten to check the data on two of them before the doctor took them to sign off on. Yeah, lucky me, mine apparently was the third one, the one she didn't get to check, which is why the error slipped by unnoticed (or so she says). Then she said the best part--she'd call the lab immediately and give them the correct weight information. And I'm hoping it sends those trisomy 18 odds right into the stratosphere (because well, 1 in 5? Gah, 20% is not a number I'm comfortable with). Needless to say, I'll be calling the nurse back later this afternoon to confirm that she followed through on her promise and see if the revised report has come back in.

I'm on for the genetic counselor appt Monday morning at 8:30 a.m. If the revised test result doesn't come by then, I'll have her call both the OB and the lab company to check where it is (unfortunately, the lab is in the Western time zone though). In the meantime, A and I have decided that we will have the level 2 ultrasound Monday at 1 p.m. and will ask them to look for "soft markers" for trisomy 18 (small head, clenched hands, rocker feet, choroid plexus cyst in brain, etc.) and if any of those show up, we will have the amnio done right then and there. That's the best I can do with the information I've found so far.

So thank you all again for your strength, your good wishes, your caring and your hope. You don't know how much you fuel my own hope as well as my strength. How I hope to share better, if not good, news with you soon. Have a lovely weekend ladies--you deserve it!

(7 p.m. UPDATE: The OB's nurse, bless her heart and tenacity, kept in touch with me all day. She just called a few minutes after 7 to let me know she had heard back from the lab--after numerous calls on her part--and the results had been recalibrated. My new risk for trisomy 18 is 1 in 25. Still not stellar by any means, but far better than the original 1 in 5. I now have a 4% chance of it being positive as opposed to 20%. I'll take those odds. A and I still agree to do the level 2 u/s on Monday to look for trisomy 18 soft markers. If none show up, I'll sleep better; if some do, we will not pass go and will proceed directly to amnio. Thanks again for your continued well wishes...will post more late Monday if possible.)


At 3:54 PM, Blogger Janet said...

Oh Dee, this sounds so much better! I never realized that weight played a factor in those stupid results. Wow, they really fucked up: first on the wrong weight recorded, then by not going over the results to check for errors before they let you know.

I will be truly pissed at them for causing this horrible scare for you, but what a relief it will be that it is probably just a scare.

Feeling uber hopeful and still holding vigil!

At 4:18 PM, Blogger Toni said...

Ugh...so sorry...my driver's license says 125...hmmm...I can't REMEMBER when I weighted that :)

Glad to hear that things are looking better...logged on today, freaked and then calmed down a bit. Thank god I didn't post to the prior message first!

At 5:19 PM, Blogger Jenn said...

Isn't it amazing that no matter how advanced our world becomes, no matter how amazing technology (medical or otherwise) becomes, it can all go down the crapper due to human error. Dee--this sounds very promising. Please post after your appointment Monday--I am dying to hear how you are doing. I will be thinking of you the entire weekend.

At 5:27 PM, Blogger lobster girl said...

Oh you are so smart to figure that out! Good for you! I certainly hope this means better news for you. Have as restful a weekend as possible, and much luck on Monday.

At 5:33 PM, Anonymous Anonymous said...

Oh God... I will have a better weekend now. I was really worried, not really about the baby, because of the high false positive rates, but because of you being so stressed and upset. I seriously almost cried a few times. Then again, everything makes me cry now.
Those errors are so totally unacceptable. BUT, it is every single person's responsibility to be their own best advocate, and to question and research every medical decision involving them, and you obviously took that responsibility above and beyond the call. It's scary how much internet research I do- mostly on reputable medical sites but also on word-of-mouth sites from people who have been through the experience- and it's absolutely terrifying how many times I've caught ALL of my doctors in untruths. Keeping up to date on the details of every test and treatment for every disease is mandatory for doctors, yet many, many things seem to pass right over them or slip their minds. It's so important to not trust everything you hear.
That's part of what will make you such a good mommy!
Yay! Good weekend.

At 6:42 PM, Blogger Julianna said...

Your SIL rocks!!!!! That is fantastic that she was so observant.

Phew........breathing easier now.

Have a restful weekend.

At 9:53 PM, Blogger Day said...

What a nightmare. I read your last post first and had a heart attack, not so much because of the baby (false positives being so common) but more because of knowing how you'd be feeling. I can't imagine your panic. As if you haven't already been through enough!

Your SIL is an angel...and those new numbers are far easier to live with through the weekend. Bless you for going through all this...my heart is with you and I just know we'll all be sighing out of relief on Monday.

Hang in there! ((hugs))

At 9:59 PM, Anonymous Anonymous said...

Yeah for your SIL and a good nurse who kept on it for you. I'm happy those numbers are so much better.

Hoping for the best for you.


At 3:11 AM, Blogger Jen P said...

Dee this is a fantastic breakthrough! Fantastic! I am just so thrilled I feel like dancing!!

Now, if that lab could just hurry it up and get you those revised numbers...I think the entire community could sleep.

Best wishes for Monday.

At 12:43 PM, Blogger E. said...

Dee, thank goodness. So far, so good -- best, best of luck Monday.

At 1:05 AM, Blogger Pazel said...

I didn't know weight could make a difference either. And I also didn't know that a doctor's office could have the weight so wrong - especially when they weigh me everytime I walk in!

I would like to email you but I don't have your email. My old email started getting some wanky messages so it's no longer active.

I agree with your plan. Go over things with the genetic counselor. Look for soft markers in the ultrasound. Have the amnio if you find any or just can't shake the feeling. My amnio was at the end of the ultrasound and was done by an urban doctor who's been doing them for 15 years. Definately inquire as to his/her experience.

Here's basically how it went. After the ultrasound, they asked whether we wanted to do it. The head part of the table was put down lower so that my feet were higher. I think this is so that they can make a pocket of fluid that the baby will not be in. The nurse used the ultrasound while the doctor readied the needle. He marked a spot with a pen. When he put the needle in, it was a quick jab (which surprised the heck out of me) and then some adjustments as it moved it in the rest of the way. I think the jab is to get past the muscle while he went into the uterus more slowly. He drew out I think two vials which he assured us would be quickly replenished by drinking extra water that day. It was over in probably less than a minute, although it was a scary minute. He showed us the liquid which he remarked looked like pee, mainly because I guess that's what it is.

I had instructions to rest and I definately did for 2 days. He said that if I was going to miscarry, it would probably start within 2 days versus say a week afterwards. The miscarriage rates for amnio are I think inflated by some doctors that are not as experienced (everyone has to start somewhere, or may not have as much volume in a rural area), and because these are high risk mothers anyways.

Anyways, I asked for the FISH results which gives some preliminary results in 24 hours. The rest come in 2 weeks, which for us was saying that all was normal and that he's definately a boy.

I had to fight my insurance for the amnio, and eventually they did cover it. Sometimes they won't cover the FISH early test part, but I felt the money was worth it for the peace of mind. Our insurance did end up covering that too.

Post on my site if you have more questions in the comments section again or let me know your email address. I'll be happy to answer whatever I can.

It has got to be a long weekend for you. I hope you're out by the coast drinking a virgin daquiri and holding your husbands hand. Maybe some chocolates are nearby which always seem to help me. I've got everything crossed for you.

At 10:25 AM, Blogger Kristin said...

Oh, those are much, much better results! I how the level II u/s shows only good things and you can start to breathe easier.

At 10:44 AM, Blogger NSR said...

Great news, Dee. I am so happy for you. Your SIL is awesome.

At 2:47 PM, Blogger Pazel said...

I keep coming over to see how you're doing. Thinking of you this morning as you go through the appointment. Please post when you're back!

At 6:09 PM, Blogger Janet said...

Just like Pazel, I am thinking about you and feeling obsessive need to refresh your blog.

Good luck my friend, I will be waiting for your update.


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