Wednesday, May 6, 2009

Gender Confusion, Among Other Things

Lots to update! It seems this blog has temporarily shifted from Lessons from Joey to Complicated Pregnancy Updates.

First off, I had my 19-week anatomy ultrasound on Monday. I told the tech we already knew the sex, so at the end she said it was a boy. WHAT?! We've been planning on a daughter for the past 4 weeks! She told me this before Jason came into the room, so of course he thought we were joking. The tech showed us what is supposedly a scrotum and penis, but to be honest, I just didn't see it. With Joey is was extremely clear, I didn't question it at all because it was so obvious. This time, not so much. And the first tech was so sure it was a girl! So the jury is out for now,thank goodness we haven't gone overboard with the shopping or decorating! Not being able to stand the suspense I've booked a 3D ultrasound next week, so hopefully we'll have it confirmed one way or another :) Boy or girl, we don't care, except for two things...boys are statistically more likely to develop "issues"" like Joey, even my OB says that boys really are the weaker sex in that regard. I did feel a sense of relief when I was told it was a girl, so a bit of panic has now set in. The other thing is a name...we have NONE for a boy! Not one that either of us even kind of likes. This is going to be tough.

Today Jason and I went to Mount Sinai Hospital to meet with a high-risk OB at the Special Pregnancy Program. We had to give all of our history again, which were of course accompanied by the sympathetic looks and obligatory words of condolences. This is often an issue when Joey isn't with us as I think people get a picture in their mind of what a non-verbal, deveopmentally delayed 3-year-old who doesn't yet walk must be like. They don't actually see the happy, smiling, social, sweet, easy-to-please and affectionate little boy that Joey is. I often find myself thinking (if not actually saying) ''it's not as bad as you think!!!''

Anyway, the doctor was fantastic and basically reiterated what my regular OB has already said...yes, I have had multiple complications but none of them, in isolation or in combination, is likely the cause of Joey's disabilities. He, like everyone else, is stumped but feels from our history that everyone has done everything right, ordered the right tests, investigations etc. to determine a correct diagnosis, but it really looks like we're just a part of that 3% of the population who has a disabled child with no explanation. Regardless, he does think that my previous complications warrant being followed by him, and he even feels I should give birth there rather than at our local hospital. I didn't like that idea at first but then I started thinking about how in addition to Mount Sinai there are 3 other world-class hospitals in 2 city blocks (including Sick Kids) so why would I turn down that kind of care???

We reviewed my test results for the cholestasis. A normal reading for bile salts is 4. High is 8. My reading at 10 weeks was 15. They've seen as high as 40 and above, and in his experience there have been little complications as a result. He's happy I've started the medication already and will continue to monitor me closely, along with my regular OB. Today he ordered another blood test to see where my levels are, hoefully they've come down as I've been on the medication now for 3 weeks. I'll call at the end of the week for the results. The doctor is also referring me to another high-risk OB that specializes in liver disorders during pregnancy, for another consult.

And now for the scary news...This doctor, Dr. R, also received the results from Monday's ultrasound while we were there. It shows a choroid plexus cyst on the left side of the brain. Often a soft-marker for Trisomy 18 (babies with Trisomy 18 rarely live past one year, if they make it to birth at all), it can also indicate absolutely nothing and resolve on it's own, a much more likely scenario. According to the rest of the report, they weren't able to get the best anatomy scan because baby wasn't cooperating with his/her positioning, but from what they could see everything else looked normal. That fact, combined with the negative results from my first trimester prenatal screen, certainly lowers the risk that this is Trisomy 18 but doesn't eliminate it. So I go back to this hospital for a high-level U/S performed by a doctor (usually they are performed by a tech) in 2 weeks. I've been told that most often, when this type of cyst is found in in the absence of any other anatomical abnormalities it results in a positive outcome, meaning the cyst resolves before birth and there are no other effects. So I'm hoping if it hasn't actually resolved that it has at least shrunk from the 8.5mm it was measuring on Monday. The Dr. who is performing the ultrasound in 2 weeks is an expert in brain and spinal anatomy, so that's comforting.

So a very eventful few days, filled with more and more stress. I'm trying to keep calm and not worry but that's almost impossible. I just have to keep reminding myself that I have the best possible regular OB, the new high-risk OB, another high-risk OB specializing in liver disorders, an OB that specializes in fetal brain and spinal anatomy scans, my family doctor and my nurse pracitioner. I'm not really sure how many specialists I haven't seen! Dr. R. called me "an interesting connundrum" and seems genuinely concerned, I feel like this baby and I are both in very good hands.

P, J & J


Rodger Bailey said...

Thanks for your post. It sure seems that everything is complicated, now. I hope you are getting the kinds of support you need under your circumstances.

I've added your blog to the Link List on Non Organic Failure to Thrive, our private social network for parents of children with FTT.

Rodger Bailey, MS

Anonymous said...

Wow...Lots of stuff to keep you stressed I'm sure...hang in there and take care of yourself and that new babe of yours (boy or girl)--I can't believe that you can't even get a confirmation on the sex!! Thinking about you...