Wednesday, October 30, 2013

14 weeks today

I went for the first antenatal visit today; No ultrasound, but I did get to hear the baby's heartbeat very briefly through a rather ancient looking was definitely not as satisfying as getting to see the baby moving around, and the rather suspicious/easily freaked-out parts of me wanted a little bit more proof than a few wooshy sounds that I listened to for like 10 seconds,  but looks like the little one is doing okay. It is 14 weeks exactly and my baby is still alive!!!! YAY!

Sometime ago, somebody impressed upon me that the ultrasound cannot be fun for the baby, because of the ultrasound waves, which apparently sound like "a train entering a subway station." So I guess not being observed via ultrasound constituted a good day for the baby, so I should not complain.

After I saw the doctor's assistant, I waited a really long time (a few hours) so I could see the OB. The wait was very totally worth it, and it was a very useful conversation; I'm not going to talk about what I learned, today, except to say that, based on initial impressions, I like this OB and think I'm in decent hands. It was also tremendously useful because only the assistants see the surrogate, and the doctor gets a report, but in this case, because I waited and talked to her, she got to know me, and because she did, it added the personal touch, which can make a tremendous difference. Sort of a game changer with respect to pregnancy management, in this case.

In other news, I'm happy to see that I crossed the 300,000 mark for page views today. So many people, from all over the world read this blog, and I'm really happy about the amount of information I am able to disseminate through it. Thank you for reading, and I'm glad you are all here.

We need a resource to vent and release pressure, so we can sound all normal and chilled out in our day-to-day lives. On that note, there is SUCH a difference between TTC-me and me-me. When I'm not going crazy talking about science and worrying about baby making, I'm kooky and irreverent with a complete gutter-brain that I am rather proud of. I wish that part of me could come through here, but sadly, you people will only get the earnest, human encyclopedia version of me that yammers on about Vitamin D and genetic testing and insulin resistance and all that other fun stuff.

Friday, October 25, 2013

A stroke of luck

I sometimes browse the internet late at night, and usually it is a colossal waste of time when I really should be sleeping...but occasionally, my random-going-nowhere fishing expeditions pay off rather well.

For example, there was that craaaaazy time that I randomly went to the yahoo donor sibling website, found a magazine article that talked about single moms who had used donor sperm, and randomly found somebody who had used my donor! I did also meet her in real life (also completely by chance). If you have not read that post of mine, you really should, because it makes you wonder if universal design is actually a makes a pretty strong case for it, for sure.

Two nights ago, I hit paydirt in a very different way. Right now, being the paranoid soul I am with my history of aneuploidy, I kind of wanted to get as many things crossed off the list as possible. The NT scan and the dual marker test have shown that the little one is unlikely to have a bunch of things (Trisomies 21,18,13, and Turners). Note that these tests have a 10-15% chance of missing out on these. 

Other autosomal trisomies end in miscarriage in the first trimester or will manifest with ultrasound abnormalities, so you don't have to worry about those so much.

The other things left are sex chromosome abnormalities (Klienfelters (XXY) and Triple X). These are much milder, so much so that they may not be caught till puberty or adulthood, and they cannot be caught on the ultrasound (although cystic hygromas are seen with Kleinfelters occasionally) or through the regular blood tests. 

Hence I've been looking out for companies that will test fetal DNA for these. I struck out with the ones I had found out about (BGI and Natera), and I was at square one. I then stumbled across this american company called Verinata that ran all the tests I wanted (13,18, 21, Turners, Kleinfelters, and Triple X). It was the middle of the night, India time. I was like, well, lets just call them and have them tell me, like every other company that I've spoken to, that they cannot test samples shipped from India.  I call, ask my question, they put me on hold, and transfer me to somebody who says yes, we ARE partnered with somebody in India, here is their number, call them and they will arrange  everything for you.  It was surreal. Nobody knows this company is in India: the person who works at the best fetal diagnostics center in India was aware of the other players, but not of these guys. The websites (of Verinata and the partner) do not provide this information. Heck, Google could not even make this connection! I just found out because I decided to make an international call in the middle of the night.

I next called the partner (Core Diagnostics), and if the next ultrasound on next Wednesday (it did not happen this week)  shows good things, then next Saturday, I will get blood drawn to get shipped off for this test that I so badly wanted to do, and which, if negative, will go a long way towards giving me some more peace of mind.

The only fly in the ointment is J's vitamin D results. She supplemented with 2000/4000 IU a day for a while before first trimester nausea hit with a vengeance, and when I checked like around 6 weeks ago, her levels were 20 ng/mL (sorta deficient). I made her take one sachet of the Vitamin D (it delivers a ginormous dose of 60,000 IU), and she swears she took it. I tested her again last week, and her levels have fallen to 14, despite some heavy supplementation.

Pregnancy is a bloody Vitamin D clearly need SO much in it. If somebody who supplements gets this deficient this fast, I would shudder to think how low the levels are in women who do not supplement at all, and the lifelong consequences it may have (for example, many studies show that if you are vitamin D deficient during pregnancy, your child has a higher risk for diabetes, among many other things). Diabetes and Insulin resistance is endemic in this country, and almost everybody is D deficient, far more so than in the west. I told J to take another sachet, stat. I'm sorry I waited this long to test her. Sigh.

But all in all, now, things are good. I feel terrified just to say the words though, like I may be tempting fate.

Thursday, October 24, 2013

First Trimester screening results

For the uninitiated, this is how they do it: They assign odds of having a baby with Trisomy 21 or 18 based on your age. This is your statistical risk. This is then adjusted based on the NT value, and beta HCG and PAPP-A levels.

My calculated or statistical risk for Downs was 1:536. 
After adjusting, my risk was a very comfortable 1:8,000 + 
For Trisomy 18, my adjusted risk was 1:100,000 (!)


Even a worry-wart such as myself would relax a bit at this point. But I can never go all the way it seems. J told me this morning that her nausea was dying down....and instead of celebrating, I started getting slightly worried. That is INSANE. Of course her nausea is supposed to go away at this point, but try telling my hand-wringey stupid self that.   

I've run into a bit of a roadblock trying to find the Indian partner for BGI (the Chinese company) to run the fetal DNA testing. While I'm more relaxed about the 3 big ones now (13, 18, 21), and also to an extent, Turners (it presents with an increased NT thickness and lower PAPP-a levels), I would also like to get the other sex chromosome aneuploidies (Kleinfelters and triple X) ruled out, and they can't really be detected by ultrasound. BGI, according to one link, may be able to do this. 

Science aside, I'm  thinking about this baby constantly. The advice my parents gave me (don't think about this one way or the other) has fallen by the wayside. I'm so scared about how many things still have to go right for this baby to make an appearance safe and sound. When other people with losses had gotten to this point with everything looking good, I had relaxed and thought their chances were great. On paper, I know things look good. If only I could believe it without reservation now.

Saturday, October 19, 2013

In the second trimester!

Words I can't imagine saying, actually. I did go for today's ultrasound, and I spent like 5 minutes shaking after I saw that everything still looked fine. Then came the bit where I spontaneously burst into tears.I eventually calmed down, but still sounded like I was on speed every time I opened my mouth to ask the doctor a question, which was, as you would imagine, a lot of times.

As of now, everything is fine. The baby measured fine, and the heart rate with 158, which was a good number. The nuchal translucency was an extremely reassuring 1.2 mm, with no heart-linked issues spotted at this point. I really like this fetal medicine specialist (she is definitely going to be getting an awesome review from me; I'm a big believer in acknowledging medical excellence). She was very kind, calm (great bedside manner) and very well read...It is super nice when I start sprouting stats that people actually connect the dots in a logical manner because they have seen those studies too and have evaluated them objectively.

We drew blood for the dual markers, and I should have those results in 4 days.

I rhetorically asked: there is no non-invasive fetal DNA testing in India yet, right? You could have knocked me down with a feather when she said that there is.

There are 2 options: BGI, a Chinese company that uses the same technology as Sequenom (massively parallel sequencing). They are already operational, but their website was not too informative, and the one study they had published  was on very small sample subsets. Update: more digging has revealed that thier test (NIFTY/iGeneScreen) has been fairly well validated. I'm confused as to whether it also tests for Turners/klienfelters syndromes. If it does, I need look no further.

Natera (they test Turners and the 3 trisomies) uses an SNP-based analysis, and their Panorama test has been extensively scrutinized, but is not YET available in may be here soon.

Both would just collect blood here and ship back to the home labs, which is fine by me. I prefer Natera, will wait and watch for a bit.

But as of now, all is okay(!!). Lets hope that the blood tests bring good news in 4 days.

I have a baby with arms and legs and hands and feet and a beautifully delineated spine, and a heart with chambers. I cant believe that is actually happening.  

Tuesday, October 15, 2013

where things are at

Tomorrow marks the 12-week point, which is when the surrogate goes to the OB as per this package I've signed up for.I checked out the OB online; it looks like regular patients score the doctor herself, while surrogates are seen by assistants, unless there is something irregular.

Le sigh. I'm so not loving the prenatal deal that came with the surrogacy package, but I'm learning to work around it without a blood vessel in my brain popping. When this is over, I'll be providing a full picture of surrogacy in Mumbai: how the recruitment occurs, how much is paid, how much the surrogate gets, where the money goes, what is done, all that jazz.

There was supposed to have been an ultrasound tomorrow (does not sound like it is the NT scan) but just the first visit with the OB, or rather, as I found out today, one of her many assistants. I was kinda geared up for it, and I just found out today that it can't happen tomorrow. Bummer.

I did find a good prenatal testing center, which comes with its own fetal medicine specialists. So this Saturday, J goes in for the NT scan there, and I'll go with her, with my mom in tow.  My lovely, lovely friend M, who came down from Philly to New York to hold my hand during that ill-fated final ultrasound in my last pregnancy warned me to take my mom with me as she is my good luck charm.

Most people, if they had gotten to this point, would be talking about this baby like it were a done deal.
In my first pregnancy, I was like that.

Now, I sat and debated with my mom what would be the next step in this pregnancy fails. But my tough attitude is wearing at the edges.I always act like everything is just a stumble, and nothing can make me truly fall, like everything can be overcome, and life can return to an even keel, no matter what happens. I've learnt to be that way in the past 3 years, and it has been invaluable.

But if this fails, I will fall, atleast for a little bit. I'm getting attached to my little one, and to hope.

Saturday, October 5, 2013

Looking good!

I'm really, really glad my mother went for this ultrasound, because she did get to see her grandchild. And he/she was doing well well. I'm really scared to say this...but as of now, there is no cause for worry.

Here are the stats: Has grown very rapidly, and measuring ahead (10w6d at 10w3d) with a pretty normal heart rate of 167 (in normal pregnancies,the heart rate increases from 5 weeks to 9 weeks, normally peaking at 180, and after, you usually see a decline in the heart rate.This does not occur in Trisomy 21 pregnancies, which is why a high heart rate after 10 weeks is associated with this condition.Well, here the normal decline occurred, so YAY.

I almost don't want to put this image up, because we are a species haunted by superstition...the last time I completely relaxed at an ultrasound (8w1d; almost picture perfect), things had ended 4 days later, out of the bloody blue. I'm also scared to provide a nickname to this popped into my head the minute I saw this picture. I'm afraid to put up his picture (yes, I assigned gender in my head). All of this is based on past experiences...I did all of these things and those pregnancies ended: yes, I am quite ridiculously superstitious.

I'm not scared of hoping though, even if it gets to be only for a little bit. I may actually try to screw up the courage to go for the next ultrasound, which would involve the NT scan. Today, I'm happy. Lets hope I get to stay this way.

The balance between optimism and pessimism

Thank you all for your comments and your support and just coming here and reading, it means a lot to me.

Gwinnie, thank you for sharing what you did---I'm so glad you got your happy ending, and I'm also sorry that you had to go through that fear. Its difficult to say what the right way to handle things is...I've seen stories of women clinging to hope when you kind of looked at all the writing on the wall and you knew things were done. Personally, I've gone the opposite direction, I've seen the faint scribbles and partial markings on the wall, and jumped to conclusions. Unfortunately, until now, with pregnancies 1 and 3, those conclusions turned out to be the correct ones.

Yet, I know, both approaches (clinging to hope vs. jumping to conclusions) have flaws, and unfortunately, we will never be able to find the perfect middle ground.

According to my parents, the best middle ground is to not think about it at all, and surprisingly, I do manage to accomplish that (around 80% of the way), most days other the ultrasound day, and the day before/after.  

But the days of the ultrasounds? That is when I am pretty much reduced to a gibbering mess,
Tiara asked me whether I felt optimistic, when I met her, and I told her that most days I'm neither optimistic nor pessimistic. Not on these days the darker emotions rule.

Its around 10w3d, and J goes in for her next U/S today, around now. I agonized as to whether I should go along or not. In the end I decided not to. I have pregnancy PTSD, more specifically, ultrasound PTSD. I don't want to go there and see a heart that beats no more, never again. My mom (my amazing mom) has gone in my stead...let us hope she gets to see her grandchild alive and doing okay.