The Planning Stages

So yeah.

Still working on it.

Since last Thursday, I've been thinking about the babies and the testing, oh, I dunno, every 0.054 seconds.  I suddenly have baby on the brain, which should amuse me as I'm an IVF'er, you'd think I'd have more baby on the brain than I have done.  Suddenly, when said babies are worrying, they're all I think about.  When the babies are fine, I'm more likely to be thinking about CSI or when I can suggest we have macaroni and cheese again or which superpowers I would want from the characters on Heroes (I'm thinking it would be the cheerleader's powers, because then the third rail on the Southwest Trains tracks wouldn't freak me out so much.  I reserve the right to have other superpowers though, if I want to change my mind.)

Now, I worry about babies.

Kind of a surreal change.

And something the lovely Ms. Pants said last week rings true with me-I had been fully bonded with the babies, or as bonded as you can get when you're freaked out that you're actually having two babies, and now after potentially bad news and seeing myself in a potentially risky situation, I'm suddenly all "Babies?  What babies?  You mean the babies I think about every 0.054 seconds?  Those babies?  I can't hear you la la la."  I am indeed detaching, and I think this is a bad thing, so now I am trying to encourage my lame ass to imagine those birthing scenarios I had been imagining before said bad news (and yes, I confess I did try to imagine what birth day was like.  I admit it.  SO?  Haven't you tried to imagine it, too?)

I've been on the phone 100 times with the midwives in our clinic.  Say what you want about the NHS (and many do), but I honestly think this hospital is fantastic.  Yes, it's in the stereotypical NHS-like building-a horrific looking 1970's job that makes one think of "Insitutional Yellow" and it's a confusing rabbit warren of badly labelled departments and yes, it does smell funny in there and they have the past 10 years of Hampshire Country Living as the only periodical to read and the guy at the pharmacy squicks me out.  But the staff in my antenatal unit-like the staff in the A&E when I was miscarrying last year-are amazing.  They're so incredibly kind and really, really go the distance for you.  So the midwife I've been speaking to handles all of the invasive testing and genetics counselling.  She's booked us in at a specialist clinic in London, which is known for being the country's best clinic for the testing of all babies, but especially of twins (I was surprised to find our hospital's antenatal unit is also highly ranked, and I take comfort from that.)  I love the midwife.  I'd give her a kidney.  Or a muffin, whichever is more palatable.  Her choice.

We go to the London clinic Wednesdy for a consultation.  We talked to our own consultant, my former IVF doctor who's now my high-risk OB, and he's said that he advises us to go with whatever advice this clinic has.  They do over 700 amnios a year (the industry minimum for recommendation is 50 a year), have some of the country's best consultants, and are also a leader for CVS (whose stats I didn't ask for as it wasn't a consideration at the time.)

But CVS is back on the boards for us.

It's just as Marie-Baguette said in my comments-in some places, amnios and CVS both have the same miscarriage rate.  This clinic is one of those-for twins, the miscarriage rate in this London clinic is the same with both amnios and CVS, both hover around 1%.  And this clinic can just test the one baby that we are worried about, although it's moot really-the leading cause for miscarriage in CVS and amnios is infection, and if you get an infection your body can go into labor, and unfortunately nature hasn't evolved the uterus enough yet to figure out that one cargo should go, but not both.

We have many questions.

1) What is the doctor's real feeling about a 1:124 chance, especially as we are considered a borderline risk-the babies' neck folds needed to be at max 2.5mm, and Twin 2's neck fold was 2.6mm (ALL THIS FOR 0.1MM!)?  (We know the doctors here will never recommend nor not recommend an invasive procedure, but I'm looking for best practice feelings.)

2) Can they put me on a course of prophylactic antibiotics, to prevent infection, because infection is bad, like a 5'2 curvy blond homewrecker with no gag reflex?

3) How will they know which baby is which?  Apparently before 24 weeks, the babies move around and can even switch places (which makes no sense to me as the twins are dichorionic, which means they have their own sacs and placentas, but I guess the doctors know what they're talking about.)  The neck folds disappear in the next week-will they know which is which, or are we looking at two tests?

4) I'm a tough chick in many, many ways.  I've been through a lot.  I can take a lot of pain in all areas but one-I have the wussiest uterus known to man.  I go running for the ibuprofen during a period at the drop of a hat (which is a no-no while pregnant, so don't worry, I'm not taking the stuff).  As the twins grow, I have substantial cramps.  What kind of impact will an invasive procedure have on my pansy ass uterus?

5) The clinic's stats are at 1% miscarriage rate, but what is that particular doctor's rate (the twin specialist, I mean)? 

6) I understand the quad panel and all blood tests are not useful when carrying twins, but are they SURE they won't help?

7) Can they scan me again and re-check?  I'm not saying that because I doubt the expertise of the other ultrasound tech, but seriously-0.1MM!

8) Can they promise that they won't hurt my babies or cause me to lose them?

OK, I know number 8 isn't possible.  Still, doesn't hurt to ask. 

It turns out they may be able to do a CVS procedure on Wednesday if that's what we elect to go for.  CVS must be done by week 14, and I'm at 12w4d today, so time is running out.  If we choose to wait, we can have an amnio week 16.  Or we can choose to do nothing.  Although the "nothing" is what I'm leaning to, Aidan is very, very strongly wanting more information.  And there are two of us in this, so I think I need to respect his preference.  I'm terrified of having bad news, and I'm terrified of losing either or both of the Lemonheads.  But though I think I would prefer not to test, we are a team in this, and both of us have "rest of our life" on the line here.

We won't have any answers until Wednesday, at which point we'll decide either yes or no for the test, and at which point the test may even be done, and then at which point I'll spend the next 5 days worrying both about the result and about the possibility of infection. 

In the meantime, I've cancelled my London meetings for tomorrow.  I'd rather stay home and re-group.  I think I'm going to need it.  I'm going to think positive and upbeat if it breaks my head open, because in some small way I think it'll make a difference.

What can I say?  I'm naive. 

(Oh also?  My subhorionic bleed is gone.  Score one for the home team, and another reason I need to believe my Lemonheads have superpowers.  They're the strongest Lemondheads in the world.  They believe in me, I need to assure them I believe in them.)

Comments

[DG]

Oh what a hard path you're on right this moment. I wish i had some comfort. Your poor mind can't rest turning it all over and over in your head, hmm.

Can you arrange some counselling, to help you and DP decide what to do?

The doctors can give statistics, but only you can decide what's right for you all.

I'll be thinking of you. I wonder if the hospital you're being referred to is my one (South East London?)

If so, their birthright centre is really lovely.

[Ms. Pants]

Ahhh, see. I was worried about that. You and I tend to deal with things the same way. Unfortunately, this is the one case where we probably shouldn't detatch as usual.

And while I can say "1% is soooo small" all I want, I know that if I were in your position, 1% would sound fatalistic to me too.

I'm sending you good vibes. Because all girls need good vibes. Heh. xxx

[Kath]

Dear Vanessa, so glad to read that your subchorionic bleed is gone. That's very reassuring. And as for your questions and plans, they sound eminently reasonable. I'm so glad you're going to be in extremely capable hands, and I hope the specialists answer all your questions to your satisfaction.

If you do have the CVS on Wednesday, I wish you all the best of luck for it. So glad that Aidan will be there with you. And I'm sending your uterus calming thoughts...

[Teresa]

Glad that the bleed is gone, and make sure you get an answer to all of your questions. I know you will, but sometimes you get in the office and start talking and yada yada yada...next thing you know your checking out and realize you only got to ask two of the million questions you had. They are some damn good questions too. In a situation where you feel like you are completely powerless, it is good to have control over the things you can, like questions-and postive thoughts. I am sending heaps more your way. ;-)

[Adrienne]

As far as assvice goes - I got nothin'. Do what you need to do for you and Aidan. My thoughts and prayers are with you and wishing you the best possible of all outcomes.

[thalia]

You know I think it's worth another scan before going ahead w CVS, but my guess that the super docs will suggest this, so you won't have to. Good luck, it seems things are in good hands - what with you, aidan and the super docs.

[caltechgirl]

For what it's worth, I hope you print out that list of questions directly and take it with you, because I think those are all very smart questions to ask, and I wouldn't want you to forget to ask any of them.

Good luck Wednesday with whatever you and A and the docs decide to do, and as always, love and hugs for the four of you!

[canape]

Those questions are awesome. And I don't think it's at all bad to want them to do another scan first. You can doubt the other tech or not - it doesn't matter - they are your babies.

Good luck!!!

[megan]

i've no advice to offer, but i have to agree that it doesn't seem like a bad idea to have them to another scan before any of the invasive testing...
glad to hear your bleed is gone and that you're doing things like cancelling meetings in favour of taking care of yourself first! best of luck with all of the decisions that lie ahead.

[Lut C.]

You've looked at all the angles, weighed all the pros and cons and called in the top of the range experts. Really, what more can a person do?

I really hope you get the best possible outcome. Good luck!

[Sara]

I'm glad you are able to talk about these hard things. Good thoughts to you as you and Aidan make some decisions. I have lots of faith that things will have the best possible outcome!

[hopefulmother]

Wishing you all the best as you make your decision for what to do on Wednesday.

I'm glad your bleeding is gone - and I'm hoping it stays away so you have a little less to fret about.

Your questions sound quite prudent - even #8. I hope that Wednesday and the resulting days go as well as possible with as little stress as possible.

[Super Sarah]

stupid time difference means I always end up repeating all the clever, thoughtful things already mentioned by previous commenters! I agree, your questions are all reasonable and well considered. I hope the Dr can give you some best practice advice and that you and Aiden feel able to make your decisions based on all the info provided. Am so pleased your bleed is gone, thats one less thing to worry about! Detaching needn't be a bad thing, at least until you have had time with a clear mind to make the best choices for you, Aiden and the Lemonheads!

[marie-baguette]

I know it is not going to help you but I need to say it: EVERYTHING IS GOING TO BE FINE. You forgot one question and it is "in your experience, how many patients had sick babies with a nuchal 1mm thicker than normal?". I bet you they will say none. So yes, still get the test to get reassurance, but try to focus on "nuchals don't mean shit". I am thinking of you.

[Bea]

Good luck coming to a decision.

Bea

[Mina Wolf]

Being the optimist that I am, I'm going to believe things will work out just fine whatever you decide to do. The fact that your lemonheads have superpowers only helps this belief!

[Teri]

Ok, so will you elaborate on National Health Care sometime? Is it a good thing, or do you prefer the private insurance like we have in the states? A lot of our political candidates are talking about going to a national health system--you've lived under both, which do you prefer? I've heard the quality of care and wait times are a big detraction to National Health Care. Of course, cost is a huge detraction to private insurance.

[Shelly]

I'm a long-time lurker (I did IVF in Jan07, now pregnant with twins also). I just wanted to let you know you weren't alone..I don't know your age, but these "high risk" results are more common than I thought. Also wanted to let you know your questions are great. I am in the US, and they did the bloodwork (PAPP-A and HCG) on me along with the NT. I'm in a different boat than you...my NT looked great, but my bloodwork and age put me in a "1 in 9" risk category for Downs. I'm planning to do an amnio because I'm an impatient infoholic and I want to be prepared now, instead of learning about Down's while wrangling two newborns. That's my personality, though. I know everyone is different and I hope you and Aidan can come to a mutually agreeable plan. Wishing all the best for you...

[becky(priss/lola)]

still in my thoughts, dear. (and lovely post in the other spot today)

[Alexa]

Sending you my thoughts. Good luck.