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Sunday, January 25, 2009

what the doctors said (pt 2)

So, as I mentioned, like, a year ago. We were able to meet with our RE, but the surgeon was running late. So we decided to contact him later. My hubby then began communications with him via email.

This is an excerpt of my hubby's email to the surgeon:

...And while the situation did seem delicate to us, the truth is that we were
given information that was taken completely out of context. We knew it was your
recommendation to only carry one child to term. I also knew that it would
be your opinion that, if we had the option, reducing Brenda to bearing only
one child to term would be the greatest reduction of risk. However, our RE's
nurse presented your recommendation to Brenda as if it was the end all, be all,
final word on the matter and that something terrible was definitely going to
happen if she didn't reduce. Your letter, while factual, was presented to us as
something that was without option, hence...we freaked out.

While we don't consider this a "simple" matter of miscommunication, we do
not hold you responsible for that miscommunication. If anything, you are the
only one (besides our RE) in all of this that, when asked, gave us a learned
opinion on how to proceed.

And the reply from the surgeon:

You are very nice to convey your thoughts on the matter in this way. And I
must say that your interpretation is absolutely correct. When I was asked to
give my opinion on the matter (i.e. when I wrote the note last week) I made the
wrong assumption that all options were open and I felt compelled to recommend
the safest one for Brenda. You also must know that SINCE writing the note I
have polled several colleagues and they all feel that my concerns are extreme
because there is no data showing a prohibitively high risk of rupture in Brenda's

In any case: I will be in Boston in ten days and will be happy to meet
with you.

We felt better. So our next appt was with the maternal fetal specialist this past Wednesday (the 21st). We had the nuchal translucency at the base of the babies' necks examined at our (nearly 12 week) ultrasound. One was well within the limits at 1.0mm. The other was just on the upper end of normal at 2.5 mm. Given that our donor was only 29 at the time of donation, the doctor is as confident as he can be that this is not an indication of a genetic abnormality.

But then......

My hubby and I had a long talk with the specialist. We went over all of my risk factors:

  1. Two invasive uterine surgeries
  2. A frozen pelvis (basically this means that I have so many endometiral adhesions that most of my internal organs are glued together). Thankfully, however, down near the base of my uterus where the doctor would perform a C section, there are few, and only "milky" adhesions--thus making surgery there much easier. The bad thing about all of these adhesions, is that IF something goes awry during the pregnancy (a uterine rupture) and it occurs in a place where all the adhesions would be difficult for the doctors to get in there and make lose the babies and/or my uterus.
  3. I still have 2 relatively large fibroids near my cervix. These were fibroids that the surgeon didn't want to touch, in order (I think), to maintain the structural integrity of my cervix.
The specialist said that because of all these risk factors that there was a greater chance than normal of a uterine rupture. However, he also mentioned that of all medical practices, OB has the fewest randomized trials in terms of studying outcomes of women with different risk factors (he noted that most women don't wan to be in the group not given the "tested" treatment"). Therefore, he had no statistics, no studies, just a gut feeling. His gut feeling? He "tilts" twords a reduction.

Not exactly what I wanted to hear, but this is becoming a common theme. "If all things were equal, we, the doctors, would feel more comfortable if you were only carrying one child."

However, in my hubby's and my world, all things are not created equal. There is no guarantee that we will be able to carry one child without complications, and there is no guarantee that we cannot carry two with few complications. I mean, when I think about it, my uterus has produced one 12cm fibroid that weighed over a pound and a second one that was 6+ cm, I think. I currently have two, 4.5 cm fibroids near my cervix (although they may have grown in the past 4 was difficult to tell from the U/S report). I am beginning to think I have the most amazing uterus EVER. All I ask is that it stay put and just do it's job, instead it has to be an overachiever and add extra, rather large adornments on the outside. That sounds like incredible plasticity to me! :)

After meeting with the specialist, I initally agreed to have a CVS done on the fetus with the upper limit nuchal translucency. After reading more about it, I have changed my mind. Given that we know the donor's genetic makeup (we paid to find it out!), we are not at risk for a number of inherited chromosomal disorders. Thus, the only think that the test would be able to determine is if the child has Down's syndrome, Trisomy 18, or Trisomy 13. Both Trisomy 18 and Trisomy 13 are "mostly" incompatable with life--depending on the severity.

Instead, I think we are going to opt for and amniocentesis at 15 weeks. That's a little late in the game, but we can also tell other things from the amnio that will give us more information. At this point, we are only willing to reduce if one of the children has an abnormality that is incompatable with life or will cause them to suffer needlessly.

So, although we are still in a little bit of limbo. We have made our decision and are happy with it. Don't get me wrong, I am scared to death that something is going to happen at say, 6 or 7 months and we are going to lose the babies. Sometimes this fear grips me so hard, that I just sit in the bedroom crying.

But, we're moving forward. We have an appointment (dear Lord, all the appointments) with a high risk OB who specializes in women who are in need of complicated C-sections.

I actually went out and bought some maternity pants today. Squeezing into my regular jeans, although still possible, was increasingly less and less comfortable. In fact, when I put on the maternity pants they felt so good I almost starting crying. Then again, I am crying at just about everything these days. Either that or gagging. I'll be glad when that settles down, because, sheesh, my stomach muscles need a rest.

So here we are, wherever this is. The land of cautious optimism. The land of moving forward.


Princess Jo said...

Caution: good. Optimism: the best thing you can do for both yourself and your babies right now.

You are doing fabulously. Your babies are doing fabulously! Keep up the good work: and never give up hope ;-)

musicmakermomma said...

Yay for you, be happy. At this point you are in good shape so Carpe Diem! I am sorry there is fear hanging over your happiness. Really great that the babies are doing ok, and I'm glad you got new pants! We're here if you need to vent.

Mermaid said...

I'm glad you've been able to reach a good decision with lots of information from (many!) doctors. Hang in there!

Peeveme said...

Thank you for the update. I have been checking and checking. All in all it all seems like pretty positive news. I can understand your Dr.s being cautious. I admire how clear-headed you and your Dh are being. I also respect how your Dr.s are treating you guys. They are giving you the facts (as they know them), letting you know the unknowns and letting you decide and they don't seem to be pressuring/judging. And the one Dr. took responsibility for the mis-communication. Of course, I totally think his calm response was due to your DH's "tone". It's easy to get mad, accusatory ect. Your Dh was very professional and as a result your Dr. treated you with respect instead of begin defensive. Wise move.

Best of luck with the amnio. I agree that since the donor is young the likelihood of a chrom abnormality is extremely slim.

It sounds as if you are settling into this pregnancy. Hoping for he best and preparing for the (very unlikely) worst.

Stay well.

I Believe in Miracles said...

Whew. I'm glad to hear good news from you. Hope everything goes well with the amnio.

Anonymous said...

What a journey, and only this far in! Oy. You are in my thougths daily.

Mermaid said...

Thanks for the comments. To answer your question, I never really had morning sickness. I was a bit nauseous in the evening a few times in the 1st trimester. In the past few weeks, the nausea has picked up. It only occurs when I don't eat enough or often enough. Getting food in my system will cure it for me and stop any gagging. It's amazing how much hungrier I am now. Soemtimes I am fine and all of a sudden, the severe hunger/nausea hits. I thought it was supposed to be limited to 1st trimester, but apparently not with me! Hope this helps!

WiseGuy said...

Hoping with you...and praying for you!