On induced lactation

Claire, Michelle, Rebecca, Pam, Josey, Meg, Sloper (OMG, how did I miss out on your second pregnancy?!?!), thank you so much for your inputs.

I started reading up on induced lactation. Reglan is a no-no because it can cross the blood-brain barrier, and has one potential really scary side effect, tardive dyskinesia. My brother actually had that as a child.

Domperidone appears to be safer. Still, it can have cardiac effects---it can prolong something called the QT interval, and hence cause arrhythmia, which could potentially cause your heart to stop(!!). Here is a blogpost on the subject on the Skeptical OB blog, though I would say, this post does not seem to be wholly objective. The truth most likely is that this drug is safe in the majority of women, and would be dangerous for a smaller subset. Obviously it is more dangerous if you are mixing it with other medications that also prolong the QT interval, or you have underlying conditions that you are unaware of. The evidence for both intravenous and oral Domperidone causing arrhythmia comes from studies they did in people over 70 years of age.

But what genuinely scares me about this drug is the fact that the baby may get a tiny bit of it through breast milk, and if the baby has any underlying cardiac issues (one unverified source mentioned that 1 in 100 babies born have some sort of cardiac issue), this could be a bad combination. It is probably safe for 99 out of the 100 babies, but what if you are the 100th one?

So...if you are taking it, exercise caution with respect to dosage, be aware of your other medications, and I would suggest talking to your doctor too. I was also a little freaked out by Claire mentioning that her liver enzymes were elevated. So all in all, I'm going to give induced lactation a pass.

Human milk banking exists in Mumbai. However, the milk is pasteurized, which destroys most of the good stuff. I AM going to try to use the milk bank to find a wet nurse though, and if all else fails, supplement the goat milk formula with banked milk.

But all this is a ways away. I want to start doing stuff, but there is no way I will before I get to the "safe zone" of beyond 28 weeks, which I feel I am crawling towards one slow inch at a time. I'm sad to say that I'm not somebody who stops to smell the roses and celebrates what I have today, instead of thinking about tomorrow. I can't celebrate that the J has completed 22 weeks of pregnancy today...all I can think of is how much more time has to pass before we are in the relatively safer zone of 28 weeks and beyond.

But this is folly, because once you decide to have a child, there is no safe zone anymore. After birth, you worry about SIDS and diphtheria and the flu. You worry about Autism. Then one day you worry about your child being bullied at school. You worry about predators----it never ends.  Somebody described parenthood as having your heart walking outside of you, unprotected and vulnerable, for the rest of your life. And here we all are, eagerly signing up for all this.

Merry Christmas everybody. I'm so very happy for everybody who has gotten what they wanted for so long this year. For the ones who are still waiting or have had their hearts badly damaged, all I can say is that I am thinking about you. There are no words to make it better.

Checking in: Week 21

I did some more investigations on surrogacy options in India today, and I'm starting to get a much clearer picture of things. I wish I had acquired all this knowledge months ago, but that is not how it works. Sometimes, even the less than ideal choices we make can lead us someplace good, and sometimes, doing everything correctly and logically will still not garner success.

Still, others will benefit from what I have learnt, and that makes me pretty happy.

One thing I did learn today--finding a human milk source in India will be extremely difficult. Everybody knowledgeable in this area is telling me that getting the surrogate to do this is a bad idea. I atleast want the colostrum, and I hope to god I can get that.  

Now, I have to seriously consider induced lactation. People who started this....what was your timeline? How long were you on the pregnancy hormones and domperidone before you stopped the hormones and the milk production began? I totally want the crash course and not the long drawn out process.

Finally: a question about the final stretch in the 3rd trimester: what gets done in each appointment? From my conversation with the surrogate handler, every checkup, all we can get done is the doppler to hear the heartbeat. That is it. There seems like there should be more, right?

Goat Milk Formula??

As I talked about in my last post, most of the formula choices available today have the capacity to induce food allergies, are nutritionally very far away from human milk, and even the organic choices are riddled with additives that were far from ideal, like the palm oil that forms soaps in the baby's gut and neurotoxic solvent-extracted/synthesized stuff like DHA, lycopene, and lutein.

So here I was, literally wringing my hands. I then remembered a book I had read a long time ago where a monk used goat milk to feed an abandoned baby. Historically, whenever the mother's milk was not available, goats milk was maybe the first choice. Based on that very vague memory, I started to search for goat milk-based formulas.

I was very pleasantly surprised. Goat milk use in baby formulas appears to be a  growing trend. There are two formula brands (Holle's in Germany and  KaniKare in Australia) that manufacture goat milk-based formulas, but both, to different degrees, suffer from the issues mentioned above. Holle's is definitely the better choice of the two though. If I was ever going for a store-bought formula, this would be the safest option.

First, let us talk about goat milk itself:

Protein content: Its protein (and sodium content) is much higher than that of human milk, so if you gave it to your baby straight, you could create kidney problems. You have to dilute it out. But---once you dilute it, it comes pretty close. Goat milk protein apparently forms "softer curds" and is easier to digest than cow's milk. In support  of this, babies who are fed goat's milk have more frequent bowel movements than do babies fed cow's milk. Not obsessed with pooping patterns yet, but I hope that the day will arrive when this becomes one of paramount importance to me.

Fat content: Its essential fatty acid profile seems to be better than that of cow milk, but not as close to that of human milk. This is easily fixed as well.

Allergies: It has extremely low/undetectable levels of alpha-1 casein (the principal culprit behind cow milk allergies).  It does contain another protein (as does cow milk) that can trigger allergy: beta-lactoglobulin. But I'm guessing that is a much less common/severe allergy. But what this means is that a subset of babies allergic to cow's milk could also be allergic to goat's milk.

Nutrients: It has high levels of potassium and selenium. It has seriously low levels of folic acid and Vitamin B-12, so if you feed your baby this formula, you have to add these back.

In a nutshell, if you went with goat's milk formula, you would have to add back a few things and choose your proportions of water and milk powder carefully. This bit is EASY. I'd much rather whip up formula at home than go with the store-bought stuff, given what I have learnt.

This is a great recipe for a homemade goat milk formula.

A good source of powdered goat's milk may be the Meyenberg brand. If you mixed this up with the coconut oil (I read up on this, it seems like a really great idea even for regular cooking), the olive oil, lactose/turbindo sugar, probiotics, and a good vitamin/mineral source (blackstrap molasses or a multivitamin), and it sounds like you would have many bases covered. In theory.

Note that you would have to add all these things back only if you were formula feeding before one year of age. After the one year mark, you could dilute the powder out less, and have to add back less as well.

Overall, what impressed me was how happy *most* parents who tried this formula sounded: read the amazon reviews and the Mt. Capra reviews (though that sounded more mixed). Overall, in most cases, the allergies were fixed, it did not smell like a chemical soup, and most people seemed to report formula guzzling and weight gain and happier babies.

So yeah...this route makes me a lot happier than the organic cow milk formula route, and it seems like something I could live with. If anybody reading tries this, please DO give feedback of how it went. Still want to try to get human milk for as long as possible.

BUT: One advantage that this presents over the human milk route--In India, I cannot eat organic, and neither can whoever acts as the wet nurse. The fruits and veggies and the milk we drink are laden with god knows what. If I went this route, it seems fairly certain that the goats would be consuming less pesticides than I currently do, if you believe Mayenberg. Got to always see the silver linings, right?

Planning all this makes me realize how badly I want to be a mommy and do mommy stuff.  Please god, let it happen.

First parenthood-related research expedition: the search for the best formula

As many of you know by now, I'm an information ferret. My digging for information is not going to end when I have a baby (note I said when, not if!); rather, it is going to intensify.

In my case, I know that unless I get really lucky in my quest for brea.st milk, I will have to start formula feeding from a really early point. My first foray into parenting-related research: finding a decent formula option. Twenty minutes into my research, I was horrified. Everything I was finding had some issue or the other.

• Cow-milk based formulas have the potential to trigger allergy due to the presence of alpha S1-casein, and its nutritional profile makes it much harder for the baby to digest.
• Soy-based formulas are something I would never consider anyway: the nutritional profile of unfermented soy is not ideal, and more importantly, most of the soy available today is genetically modified and has been sprayed that godawful pesticide Roundup
• Wheat-containing formulas have the capacity to trigger gluten allergies. I don't know WHY gluten allergy is so common today, as compared to 50 years ago. Clearly, there is something different with the wheat grown in the world today, or our reaction to it. The why of it will be a post in itself one day.
• Then I considered an elemental formula like Neocate...only to find that instead of lactose, they add corn solids to sweeten the bloody thing.  

Not only are the nutritional profiles of all 4 of these formula choices problematic, even if you go organic, they have some insane additives.

The more you read about the food industry and how fake and profit and lobbying-driven it is, especially in the USA, the more depressed you get. 

DHA supplementation of baby formulas sounds like a good idea right?  Your baby would get this vital fatty acid that it needs for optimal brain development. Except---your baby does not need it. Except the DHA in most baby foods is extracted from algae using hexane, a neurotoxic solvent. What they should be adding is  adding DHA from a natural source, but that is too darned cost ineffective for them.

Lycopene in tomatoes is great. So if you saw it in your baby's food, you'd be happy. BUT---but the version in organic infant formula is produced synthetically by the chemical manufacturer BASF.  A three-stage process is used to produce synthetic lycopene, and involves the solvent dichloromethane and the solvent toluene.  Toluene is a neurological toxin derived from benzene.

The source for all this information is this FABULOUS article written by the Director of the Cornucopia Institute, which serves as an organic food industry watchdog. 

Basically, even the organic versions of regular formulas for the most part have nutritional profiles that differ from that of human milk, and they could be contaminated with trace quantities of stuff like hexane and toluene, and many contain ridiculous and unnecessary additives like carneegan. This is where you want to grab the food industry people (scientists/executives, etc) and whack them for doing the stuff that they do. Is it all for profit? Do they simply not stop and think? If you read the article above, this woman also talks about the evolution of baby formulas, of how their ingredients could change over time, and this is a key point. The product you see today may not be the one that is there like one year later.

So what is a better, practical alternative? Well I found one, but that deserves a post of its own. Coming soon. 

A glimpse of the realities of surrogacy in India

The 19w1d scan went off wonderfully. My baby is a cheeky monkey...he/she kept alternately yawning and sticking its tongue out at me. No issues were spotted, the bloodflow to the placenta (as measured by the doppler) was great, and the cervix was closed at 3.4 cm. All good news.

Now, J and I have had a rather closer relationship than what is recommended between a surrogate and the mother. Everybody (lawyers, doctors) encourage you to keep a contact to a minimum. The reason behind this is that India's surrogates are women from lower socio-economic strata, and the mothers appear vastly wealthy to them. Hence, the theory is that if they can extract money out of you, they will. This is an extremely ugly equation, and I've tried my best to sidestep it entirely. I don't care if the surrogate takes money from me. I had always planned to give her far more than the amount she had been promised, and indeed, I have been giving money to her every  time I see her. My gynecologist called me a bleeding heart...to her, these are greedy grasping women who see this as a business. 

I don't see it in this way...the way I see it it is these are women who are trying to make a better life for their families, and they have never had the luxury of being honorable and principled. It is hard to be that way when you have so little. So if my surrogate tells me small lies to increase my sympathy for her and get some money out of me, I honestly don't give a damn.

But on the day of the ultrasound, J may have upped her game. She told me that she was being evicted from her home, and was forced to go live with her sister in a place on the outskirts of Mumbai. Bleeding heart me was immediately horrified and I started thinking...how can I fix this? How can I get her housing?

She claimed she needed a hefty deposit for a new place. At this point, even my sort of unworldly mom was like well, she is playing you. The only person who can corroborate whether this is indeed real  is the handler, and she is a woman from the same community...she will lie for her if necessary, and yes, she did claim that J had to move in with her sister the very next day. 

I want to find out if this is true or not, but I have no way of doing so: the handler is not taking my calls, and I have no way of corroborating anything.

I also realized what an uphill struggle everything is when I want something out of the ordinary. J's delivery the last time was at the same hospital, with the same doctor. When I first asked her, she told me she had given birth at full term. Recently I asked her what week it was, and she said 32 weeks.  The way she tells it, she was induced: I was horrified: why would you induce at 32 weeks? She claims the baby was a very high weight (like nearly 8 pounds), which does not add up for a 32-week delivery. Hearing all this, I just wanted to get the medical summary. Easy right? Nope. I ran into one unexpected wall, when the doctor who had managed the last pregnancy told me she could not get this information, because it was medically unethical for me to see it. I then asked, well, can you just get the information and sum up the scenario? She said "nope, ask the surrogate." The surrogate claims she has no paperwork. Trying to get her to access her own medical records from the hospital will be, well, Sisyphean.

Right now, there is no point in pushing. I just have to pray that everything goes well, because the simple things that you can influence in other places cannot be managed here.  If  J turns out to have gestational diabetes (which may explain the induction and the large baby), she is not going to do anything to control it. I have to beg her to take her vitamins, and for the last two ultrasounds, I literally had to bribe her to show up. And despite what it sounds like, she is sort of a decent person...just unmotivated and wants to hang out at home while she gestates the baby, and not be bothered by pesky blood tests because she truly does not get what any of this is all about.

I should add...a lot of what I am going through here may be avoided if you go via an agency like Surrogacy India. They provide housing (for the surrogate and her children apparently), transport, and all in all may do much more. I'll be profiling them, and one other agency.

Writing all this out was cathartic. Everybody around me is telling me to just stop thinking about all this, and that is what I'm going to try to do for a while and see how the cards play out.

Week 19....

First, I had NO idea that Disqus was such a pain, and I'm sorry I subjected you guys to it for so long. It is gone now, never to be reinstated. On comparing blogger commenting and WordPress commenting, there does not seem to be too much of a difference. WP IS nicer in other ways, but when I think of how much else I have to do when I move, I sort of whimper and think it is not worth it. So I'll *probably* stay here. So commenting is easier, and as a favor to you all (I hate it when I have to do it on other sites), I've turned off the word verification thing. Hope I am not immediately bombarded by spambots or whatever else that mysterious feature protects against.

Pregnancy news: J will be 19 weeks along tomorrow. She apparently went for an hospital visit last Thursday and everything was fine. She is not having an easy time of it though: while her hemoglobin levels are just below the the lower edge of normal, which is apparently good for a pregnant person, she tells me that this pregnancy has been much rougher on her than her last pregnancies, with constant dizziness as well as nausea.  One reason could be the crazy high beta HCG levels...the levels in almost all my pregnancies has been really high: one clue about how high came in the dual marker scan at 12 weeks; they express the levels as "multiples of the population mean" or MoM. So if you have a beta-HCG MoM value of 1, your levels are at the population mean. In this pregnancy, the beta-HCG MoM was 2.15, which may be the reason she is feeling so crummy. I hope it is nothing more sinister than very high pregnancy hormone levels.

The one thing that I've been freaking out slightly about is the placental grade. Classically, you are supposed to start with a grade of 0 in the first trimester, move to 1 in the second trimester, stay as 2 in the second trimester and most of the third trimester, and hit 3 only just before you deliver. The placenta was grade 1 in the first trimester, and grade 2 already by 17 weeks. I expressed my concerns to the fetal medicine specialist, and she told me not to worry, that the grading system is obsolete; now what counts is the placental blood flow as measured by the doppler. And that, apparently, was normal. We go in for another scan this week, as recommended by the fetal medicine specialist.

I now have to start thinking about feeding this baby, and how to come up with breastmilk from a safe, tested source. I'm also starting to weigh the pros and cons of induced lactation. Every time I start to think about planning for when the baby comes, I'm paralyzed with fear: what if I start doing stuff and something goes wrong? But as the weeks pass, I do have to put that behind me.

In other news, I found this excellent Fertility Authority article on multiple embryo transfer that I thought was worth sharing. What they said about the shortsightedness of American insurance companies in refusing to cover IVF and thus pushing people to transfer multiple embryos and then having to pay for the staggering medical costs arising from complications in twin/triplet pregnancies was spot on...talk about penny wise and pound foolish! I wish they at least covered transfers as a compromise.

Considering a move (updated)

I'm currently considering the WordPress plunge...I've exported most of the contents of this blog to a new blog there (the easy bit), and I'm still feeling it out and seeing how I like it.

If I do like the fit of it, I'll complete the move. This process has been initiated  for two reasons: a) that newspaper article and b) It is *so* much easier to comment on WordPress, especially from a mobile device. Question: Just how difficult do people find Disqus? Have you ever felt like commenting but have given up because of how painful the process is? I've had a few people mention this to me in passing, and I want to get an idea of whether this is a real issue

If I do move, people could get the new address from Mel's website, or you could email me for it. I should reiterate, I'm just trying this out. There is a lot to do while trying to move a behemoth of a blog from one site to another, and I may just throw my hands up and stay here if  I feel the easier commenting is not worth the hassle.

Update: I decided to first try the path of lesser resistance: Disqus has been deleted. The only reason I will miss it is because it allows you to directly respond to a particular comment, which the commenting options on Blogger do not seem to allow. Does its removal make commenting easier? Would people prefer WordPress to Blogger commenting? If you can, please let me know, because it will help me decide whether to stay here or move.

Time it is a-crawlin

Somebody asked me when I'll be able to share everything I've learned about surrogacy, and I answered, only after this process is done for me. And I'm praying it does not get done for atleast 3 and a half  more months.That is so far away, and time, it seems to be crawling forward.

I have such a long way to go before making it into the safe zone. Even at the the best Indian NICUs, 24 weeks is probably considerably less promising than it is in the western world, where it is not very hopeful to start with. At 28 weeks, you possibly start to have some chance of making it. At some point, I think I'm going to put together a list of studies of what exactly are the realities faced by a baby born at 28 weeks. It is definitely something people should think about before deciding how many embryos they want to transfer.

Yesterday, the risks of pregnancy sort of struck close to home. One family employee's wife is, from the sounds of it, facing intrauterine growth restriction and pregnancy complications with a twin pregnancy. Here is a girl who was not infertile and really young, and should have had no issues with pregnancy. Her doctors told her that had she been carrying a singleton, her chances would be better  She is 28 weeks along, but the thing is she probably wont get to be at the hospitals with a good NICU..apparently her doctors told them that things did not look good. Hoping things end well. Gave her husband a Vitamin D sachet, for what little it its worth, because with a twin pregnancy with no supplementation, she was bound to have been badly deficient.

At my end, the only think I need to worry about continues to be Vitamin D. J cannot take the 2000 IU Vitamin D pills (she claims they make her throw up, but says she can down calcium and iron, which I find rather contradictory). I don't want to keep continuously giving her sachets, and the key is taking it regularly. So now I'm trying to have Vitamin D oil drops sent from America. As things continue to progress (you note that I have gone from saying "if" to "as," which represents a huge leap of faith for me), I will need about a gzillion things off Amazon, which I will somehow have to have sent to India. God I miss Amazon prime.

Once we make it past the 20 week mark (2 weeks away), I'll have to start thinking about fun stuff like telling people at work and how to arrange to feed my baby. At least the latter should make for an interesting post!

16w6d: Detailed anatomy scan mostly done!

I got us in today instead of having to wait, and OMG, the relief is indescribable.

My biggest concern was addressed: her cervix is closed at 3.2 cms, as determined by a transvaginal scan.

We did the detailed anatomy scan, and everything seems fine. I kept trying to cheat to see the baby's gender, the doctor laughed and told me that I had no chance of figuring it out. I am going to try again at the 19-20 week scan when we measure femur length. Am not too optimistic of my chances.

It is both a blessing and  a misery that I am not carrying this pregnancy. I'm saying it is a blessing because I probably would have implanted the 4 embryos that 2 surrogates did not implant, and unless we greatly lucked out, we would not have transferred the embryo with the mojo first. Its a blessing because my stress levels would have been through the roof through the entire process. It *may* be a blessing in that I am an untried entity when it comes to carrying a pregnancy longterm, while J is a proven deal.

It is a misery because my baby is nearly 17 weeks along and I have not felt him/her yet. Its a misery because trying to get J to take her vitamins is well...challenging. Nobody else is making sure she eats well...I've been giving her bags and bags of dry fruits (nuts, dates, stuff like that) to make sure she gets some bio available micro-nutrients into her. I have to beg her to eat meat because her B-12 levels are low. Getting her to this ultrasound took 3 scheduling attempts, and a little strategic bribing.

Based on my experience of surrogacy in India, few people are this hands on;they assume everything would be managed the same way they would manage their own pregnancies, and show up 9 months later to get the baby. This is what the medical establishment here advises as well.

I'm incapable of doing that...one of the reasons I moved back to India was to make sure that if I went this route, I could try to monitor the situation. I don't know if that will make any difference, or help at all, but I could not have done it any other way.

I want to meet this baby so badly, but definitely don't want that to happen for atleast the next 18 weeks. I keep counting down the time left once a day.

Taking the sensible approach to treat infertility

This post was prompted by two things:  another blogger's accounting of her painful response to lupron during a FET, and yet another multiples pregnancy that may just end in the unthinkable

All in all,  I am struck by how often  doctors just follow a set protocol without being thoughtful about the situation, the patient's problem, the patient's comfort, and the long-term safety of both the mother and the child. If the doctors can't think about all these things, then the patient should, because ultimately, they are the ones facing it all. 

There are many roads to infertility. All we can do is identify the problem and treat it intelligently. When I say treat it intelligently, I mean choose a path that minimizes the number of injections you have to take, the hormonal overload you face, the number of FETs you have to do, and importantly, choose a path that allows single embryo transfers so you do not have to face the higher risks associated with a twin/triplet/quad pregnancy.

Here are some practical examples:

• If you have a high-ish antral follicle count and a normal-ish cycle, choose the antagonist protocol over the long agonist protocol: The antagonist protocol is infinitely more "natural" than the agonist. Overall, most studies fail to show any benefit of one over the other.  The antagonist protocol is infinitely kinder to patients: you have to take a far fewer number of injections (Doctors, yes, this DOES matter). You can skip lupron. You have a reduced risk of OHSS. Knowing all this though, many doctors prefer the long protocol to the short protocol simply because it has been around longer.
• If you can identify a relative date of ovulation, even with +/-3 days of variation, choose to do a natural FET over a medicated FET. That way, you don't have to start your pregnancy already having been on lupron followed by estrogen followed by progesterone injections, you simply start with Beta-HCG (RMA-NJ has a trial on this) followed by progesterone, and transfer 3 or 5 days after ovulation. Many doctors are now going with a natural FET now. Incidentally, this study found better results with a natural cycle as opposed to a medicated cycle. This does not surprise me, because mother nature is the best architect, and giving somebody three hormones to mimic the complex natural process should logically be the less efficient approach. I don't know why REs prefer a medicated FET.  One fertility center basically said that some doctors like the medicated cycle better because it is less of a hassle with respect to scheduling. Needless to say, I don't respect doctors who would pick medicated FETs for solely this reason. 
• If you end up with a large number of embryos, then do your best to pick the best one in the bunch from the getgo, so you do not have to do 5-10 transfers to find your two good ones.  There are two things you can do for this: let your embryos grow till day 5 (most of which arrest are shown to be chromosomally abnormal) and test the rest. This part is up to your doctor. The embryoscope has some utility in this weeding out process to allow you to transfer your best embryo first. But it is not a conclusive/fool proof test by any means.  To really know which of your embryos is okay, you need to find a doctor who has the technology to offer a trophectoderm biopsy with CGH microarray testing. Note that a Day 3 biopsy and FISH testing are useless. Day 3 biopsies are bad for two reasons: Most embryos are actually chromosomally abnormal at day 3, and if you test at this point, you may throw out a good embryo (the doctor at RMA-NJ told me that a lot of the embryos that they had discarded as "abnormal" through day 3 testing/FISH turned out to be normal when tested at day 5 with CGH microarray: they had been "rescued"). The second reason is that the biopsy itself can damage the embryo, given that you are pulling out 1 cell out of 8. 
• Avoid transferring multiple embryos: To do this, you have to let the embryo grow in the lab till day 5. This is where the patients may balk: if a low number of eggs are obtained, then most patients are reluctant to even grow their embryos to blasts. They don't want to see their embryos arrest in the lab, and somehow feel that if it goes into them, it may have a better chance. Here is the problem with that idea: right now there is little to no evidence to show that the womb poses any advantage over the petri dish. If you transfer all 3 of your day 3 embryos or two blasts at one go, you may win the battle but lose the war. I've lost count of the number of people on the blogsphere I've seen this happen to.  I've seen some people pull through through the skin of their teeth, after being on bedrest for months, and enduring unbelievable stress. Compared to that, a failed IVF cycle is a walk in the park.  If you can...grow your embryos to blasts, biopsy them on day 5, find out which one is chromosmally normal, and transfer that (pregnancy rate: 66.4%). Failing that, transfer one blast at a time without biopsying (pregnancy rate: 47.9%). 

The first two things I've talked about here, picking a more natural IVF, choosing strategies that minimize the number of injections you have to take (it is really easy), and picking a  natural FET is doable for many, and most people would have no issues with these things if they fit the necessary patient profile.

The third thing is a comfortable place to be in: If you have 12 day-3 embryos, you can easily make the decision to grow them further, and most people do. The testing is up to your doctor anyway. On the day of transfer, you have to make the harder decision of transferring one or two. Remember, a day 5 blast has about a 50% chance of implanting.

The fourth choice is the hardest. What if you get only 3 fertilized eggs? Making the decision to wait and grow those in the lab for 5 days, knowing that all of them may arrest at day 3 or 4,  and facing the reality of going home empty handed from your IVF is the hardest decision to make.  But therein is the gamble. You could transfer all three embryos on day 3, be ecstatic when you have a positive pregnancy test, and 20 odd weeks later, lose two or three babies. It has happened so many times, and I'm writing this post because I am very, very tired of seeing it happen. Everybody thinks that this could not possibly happen to them, or they choose not to think of it at all when going for embryo transfer, but really, they should. Not all doctors have a single embryo transfer policy, and they should. Because gambling with lives like this is not acceptable.

Despite my preaching, and my knowing all this, I gambled too. I wanted to transfer only one blastocyst at a time, but my doctor froze my embryos in pairs even after I specified that I wanted an elective single embryo transfer. I could have done a single embryo transfer and frozen the second embryo. I did not, because I was too afraid that freezing twice many be damaging. I green-lighted the transfer of two embryos to one surrogate, and prayed only one would implant, and I got lucky. My OB-GYN, who regularly sees surrogates, told me that she considered all surrogates high-risk. My mouth fell open then, and I asked, "Even the ones carrying singletons?" She said yes. They are apparently high risk for many reasons, not all of which that I bought completely.  As we move into the second half of pregnancy, I am terrified of pre-term birth. And that is with a singleton. If there were twins now, my stress levels would be much higher, and my fears would be perfectly valid. 

Take home message? Think long term, not short term. So hard to do, I know, but so prudent.

Reassurances and (good) news

I've been rather surprised by the responses to the last post. First, I just want to say that even if I do move, I'll make sure all the legit people who want to find me would be able to. My new blog would be listed through Mel's website, and even if I wiped this website clean of everything, I'd still leave a post with my email address so people could get in touch with me to get the new address.

Also, I'd like to reiterate a big part of why I blog: to make information available to people. To this end, I made this blog Google-searchable a long time ago, and many people have found this site that way.

 I'm also not just invested in making sure the "regulars" find me (that was a thoughtless choice of words). Even if you came across my blog just now and would like to keep reading, you will be able to.

What WOULD suffer through the move would be the information itself. I'd like to still have a Google blog (not ruling out Wordpress though). If I stay with Google, I am not sure if the all my posts could be moved (anybody who knows about this, please tell me if it is possible, and how). Also, it would take a while for search engine optimization to kick in at the new site.

Taking stock, based on the lack of random visitors, I think I am mostly safe. But all it would take would be like one untoward visitor/comment. I still feel violated that I was dragged out there like that. The journalist kept telling me that well, she was given my information, and I kept pointing out that my RE had absolutely no bloody business to do so...but less said about that, the better.

I did get an incredibly nice email from somebody in need who found me through that article, and I want to say that I am really glad he did. But overall, people, I'd rather you found me through a Google search, and not the front page of a newspaper.

Anyway, moving on to pregnancy-related stuff....I got the results back for the Verify non-invasive fetal DNA test....and it was all negative! That conclusively rules out Trisomy 21, and almost certainly rules out Trisomy 13 and 18 and Turners syndrome.

It really, really SUCKS that I cannot find out gender: this test could provide me that information...they have it in a little file somewhere, but because I live in India, I have no access to it. Every medical professional is forbidden from revealing gender in this country. And for somebody like me, not knowing something so momentous is like smearing me with honey and letting ants crawl all over me. Seriously.

Finally, the only fly in the ointment continues to be J's Vitamin D deficiency. She swears she took two 60,000 IU sachets (she said she thew up a lot). I checked her levels again, and they were exactly the same as the last time....14 ng/mL. Deficient. Didn't know what the heck she was doing when she said she was supplementing.

So last week, I met her and watched her have one entire sachet. There are many reasons I'm so vehement about decent levels in pregnancy. One is if you are deficient, your child's risk for stuff like diabetes and other things definitely goes up. Second, Vitamin D deficiency in the second part of pregnancy conclusively and definitively increases the risk for all sorts of stuff  (gestational diabetes, bacterial vaginosis, other infections) that can contribute to second/third trimester complications, including preterm labor. As an important distinction, Vitamin D deficiency early in pregnancy can contribute to preeclampsia. There is so little you can do to even try to protect yourself from stuff like that. All you can do is avoid  pregnancies with multiples, have vitamin D, and check for infection regularly through urine tests. None of these are foolproof shields, but they're all we CAN do, and they may go some way in protecting you.

If things continue to go well... one ultrasound at 16 weeks for my own peace of mind), followed by the detailed anatomy scan at 19-20 weeks, and I cross the 30 week mark 10 weeks later, I may start to really believe that all will end well. Till then, in my too cynical, burned-too-many-times form, I remain deeply suspicious of the Universe's intentions.

I'm back!

My doctor gave the bare bones of my story and the address of my blog to a reporter, without asking me about it first (!). That reporter visited this blog and wrote to me asking me a bunch of questions, which I did not get around to answering for a few days. I finally wrote to her Saturday night asking her if she still wanted my response.

I woke up the next day to find the bare bones of my story, as well as my bloody blog address (!!!!!), published in a story featured on the first page of the biggest newspaper in India. I log in here and find random people visiting from like everywhere in India. I panic and shut down the blog, and go try to get the reporter to get my address off atleast the mobile version of the story. I succeeded after a few hours, and am going briefly online again to test the waters.

I can't believe this happened----I've always tried to stay as anonymous as possible, and I've lost track of how many reporters I've rebuffed. Let us hope damage control has been sufficient. I want this blog to be found by people who come looking for information on it, or who are part of the the ALI community, and not random gawkers who happened to read about me in the papers.

Worst case scenario: I think I may end up moving.  If I do....the regulars...you will know where to find me.

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 Doppler...it 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.

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 thing...it 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 vacuum...you 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.

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 (!)

YAY!! 

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.

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 India..it 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.  

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.

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 baby...one 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 though...here 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.

The utter suckiness of ultrasound days

Thank you all for chiming in. The day of the ultrasound is always incredibly stressful for me, and no matter what, I'm always shook up that day. I spent Saturday evening crying, and my father told me that I needed to not get so emotional during this process. I told him that I'm only emotional in fits and bursts, and that I would be fine on Monday. Turns out, that was true. I'm fine today, and I will continue to be so till  the next scan in 2 weeks, at which point I'll turn into a wreck again, unless things look picture perfect, and they never probably will.

There is no telling what will happen now. The lag in growth IS a bad sign. Does it mean 100%  that it will translate in miscarriage? No,  but it sure does raise the odds.

Then again, as somebody commented, miscarriages can come out of the blue. Pregnancy # 2 grew at just over 1 mm per day, and had a pretty normal seeming hearbeat (150 at 8w1d), and everything stopped 5 days later.

Btw, here is an interesting fact: while there can be a larger variability in measuring the sac, inter operator variability in measuring CRL is much lower: one interesting study noted that one person measured 6 mm, a second person would measure between 5.4 and 6.7 mm, a +/- error of less than 1 mm. So no matter who is measuring, I'm behind.  
 

Reproduced from http://onlinelibrary.wiley.com/doi/10.1002/uog.10075/full#tbl3

Right now, I'd give myself a 50-50 chance of making it. I found this very interesting study from England. They got a batch of patients who looked like they may miscarry in the early ultrasounds, and took 2
ultrasound readings in the first trimester, and looked at what cutoff of CRL growth predicted miscarriage most accurately. Note that normal growth in most viable pregnancies is about 1 mm per day.

All the pregnancies shown in blue made it, while the ones shown in red did not. Based on this, the authors concluded that if CRL increased at less than 0.2 mm  per day, you had no chance. If the increase was 0.4 mm per day, you had a pretty high frequency of loss, but some did make it. Note that the authors only observed them till 11-12 weeks; some of these may have been the viable trisomy category (which is the absolute worst case scenario). At around 0.7 mm growth per day, things seem split down the middle, and that is where I stand. My chances are definitely lowered, but things may turn out to be okay.

And very importantly, today, I am okay. And I'll be okay no matter how things pan out here.

Not looking good

There was a heartbeat, nice and strong, at 178.  There has been growth too, up from 2 mm the last time to 15 mm today. The problem is, at the last ultrasound at 5w6d, it was measuring 5w6d.  Today, at 8w3d, the embryo is measuring 3-4 days behind, at 15 mm (16 mm is supposed to be the normal 8 week CRL).
Normal growth everyday is supposed be 1 mm. This baby is growing at 0.7 mm every day, which is exactly the value I calculated in my first pregnancy. I then had freaked out, everybody pooh-poohed me, and then my mom left, and I discovered my first miscarriage 5 weeks later, which just made it all so much worse.

When the doctor at RMA NJ was asking about my pregnancies, he specifically asked me whether there had been a slowing of growth between 2 ultrasounds (measuring on target at one point, and then behind the next).

According to the conversation I had with him, and reading the accounts of many many women freaking out, it is fine if you are consistently behind (For example, if you measure 6 weeks when you are supposed to be 7, but at the next ultrasound, the lag remains the same and does not increase). But if your growth lag increases with every passing week, then that pregnancy is *probably* on its way out.  This is borne out by both what the RMA-NJ doctor said they observe frequently, this study, anecdotal accounts on the internet,  and what I observed in my first pregnancy.

However, the other thing is that J has been barely eating, because her nausea is so bad. I'm hoping the slower growth is due to poorer nutrition;while that is far from ideal, many women who starve through the first trimester go ahead with no issues. She is also having dizzy spells, which make me wonder how her iron levels are. My RE advised against iron supplementation right now because it makes the nausea worse, but I wonder how anemic she is at this point, especially if she is feeling dizzy. I don't know if poorer nutrition retards growth, or rather, how poor the nutrition has to be to achieve this. She is atleast taking folic acid (and some vitamin D), but nothing else. I had a really long conversation with her about nutrition today, and her options.  We'll see how much good it does.

I've almost resigned myself to the fact that this one may end. If it does not, it will be a very pleasant surprise. My parents talked me out of testing again in one week, because if the lag has only increased but the heartbeat is still there, that just creates more stress. But, on the flip side, if the heartbeat stops soon, I don't want to wait weeks to discover that, for multiple reasons. As a compromise, we agreed to retest in 2 weeks.

What a good place to be in, again. I don't want to be the one freaking out. But I've seen warning signs in each pregnancy (except my second, which looked close to perfect till it was over) and when I talked about them, everybody told me to stop drawing conclusions on insufficient information and stop worrying for "no good reason." Unfortunately, I was right then. I'd really, really like to be proven to be completely wrong in this instance.

All the goodwill in the world

A fellow blogger Paige lost her first baby to pPROM in 2010. I just found out she lost her twin boys, possibly to incompetent cervix. I found out about Paige's pregnancy a few weeks ago, and I was hoping so badly for a happy ending for her, and everybody wanted things to go well for her, so very much. All the goodwill in the world---we feel like it should be a powerful thing, and yet it is but a leaf in the wind that proves utterly ineffective all the time. Who has the power? Who decides these things? Is it the most likely possibility decided by "n" number of biological variables working with or against each other, unaffected  by outside influence? Or is it the universe's will?

My mother keeps telling me that no matter what I do, I have to have the sanction of destiny for it to work out. Maybe, maybe not.  Its a question that my brain keeps circling around, and will continue to circle forever.

I'm heartsick because of Paige. This is her blog: I request you all not to go there to silently watch, but only go if you want to truly commiserate.  

I'm sorry I've been silent about my situation: the ultrasound was delayed this week because my RE's receptionist did not book an appointment well enough before hand and could not get a slot. It will happen hopefully tomorrow. J would be about 8w4d along. Don't know what I will find...mostly comfortably numb, except for moments of that familiar heart-in-your-throat panic when I actually think about it. If the baby is still fine, this would be the furthest any pregnancy of mine has come. I know there is a lot of goodwill coming my way too. I wish something like that could have been the deciding factor, instead of an unseen, incomprehensible power running the show.

Rambling along

First, I owe the Indian lab testing establishment a bit of an apology, it appears that THEY do follow the TSH mandates; the normal reference range according to a leading testing lab (Metropolis) during the first trimester is 0.5-2.5 microIU/mL.

J (very thankfully) is anti-thyroid peroxidase antibody negative, and her TSH has decreased from 2.77 to 2.3. How I believe this happens: your need for thyroid hormones increases during pregnancy. Soon after you become pregnant, you body increases its production of TSH. This causes your thyroid to make more T4 and consequently, T3, and these in turn, through negative feedback regulation, could suppress your TSH.

This is what happens when your thyroid function is normal. If you do have anti-TPO antibodies, this process could be out of whack, and your TSH could be elevated during pregnancy, as in my experience: I have anti-thyroid antibodies and my TSH levels increased during pregnancy because my body may have not been able to meet my thyroid needs: In my opinion, the prudent thing to do is check TSH twice, once before, and after, you get pregnant. If your TSH is high and you turn out to have anti-TPO antibodies (seen in one of of every ten women), then, you should treat with thyroid hormone.

Unfortunately, J is vitamin D insufficient (20 ng/mL), and this is after I gave Vitamin D pills (2000 IU/day). I believe she took them for a while, because her levels are not terribly low, especially for a newly pregnant Indian woman: Indians on the whole tend to be more deficient, for whatever reason, that white people, while people of African origin appear to be even more deficient than Indians, and I don't know the situation for Asians.

Insulin resistance is rife among Indians today, and one reason for the this increased incidence may be the seemingly endemic-nature of Vitamin D deficiency. Studies now suggest that if you are vitamin D-deficient during pregnancy, even if everything goes well, your child, depending on his or her genetic vulnerabilities, will be at increased risk for wheezing and asthma, schizophrenia, multiple sclerosis, type 1 diabetes mellitus, and insulin resistance. And maybe even the most scary thing of all, Autism.

The good news is that J is still having nausea. Unfortunately, this makes her unable to gulp down pills. I'll now have to make her have the Vitamin D sachets, which have ridiculously high dosages of 60,000 IU per sachet.

The next ultrasound is in 10 days, according to the handler. That should be just short of 8 weeks.

Thank you Augusta and Sloper (and indirectly, the wonderful Adele), for what you said. I am thankful that there are many people out here who truly get what I am going through. On the other had I'm also sad that they get it, because the only way you can is to have gone through one or multiple losses.

I still have no faith that this will work, I'm just watching and waiting. That faith can only come with time. Like I commented on Jo's blog (who has successfully crossed the 12 week point, YAY!) is that while we can feel optimistic about somebody else's chances, it is hard to summon up a similar optimism about our own situations, especially if you have had "normal" ultrasounds at the 6-week point end in in miscarriages at the 8-week point, thrice. What Augusta said a while ago, that it is human nature to keep expecting history to repeat itself, is something I remind myself of regularly:  I know it does not mean it HAS to, again. It is just hard believing that in my heart.

First ultrasound

This has to be the most chilled out ultrasound I've ever had, and I'm saying that because I was not there for it: I was flying somewhere high above the Atlantic when it happened and was probably watching a Ryan Gosling movie during the event. Best.Ultrasound.Ever.

The baby is measuring on track(ish) (5w6d), with  a really high heart rate (139) (!!). The normal range for this time period is supposed to be 80-110, so that is mildly eye-brow raising.  The shitty bit with knowing too much is that I know that while slow heart rates are definitely associated with aneuploidies,  higher heart rates (as measured a bit later) are associated with Trisomy 21. I am not really stressing out about it, because hey, what would be the point? Plus its not crazy high right now: it would be if it were 190+ a week later. If it just coasts or increases only mildly, then there should be be no cause for worry. If anybody has any crazy high early heart rates producing healthy babies, please, chime in. Yes, we worry every which way, and we can't help it.

Chiming back in with an update on my understanding of heart rate in Trisomy 21 pregnancies: it looks like it may be low in the 6th week,which is  seen for most aneuploid pregnancies. However, an elvation at a much  later point (past 10 weeks-ish, not sure) has been observed for Trisomy 21 pregnancies. 

Based on an explanation I read, this may be the deal: In a healthy pregnancy, the heartrate starts out slow, and keeps increasing till it peaks at 9 weeks at around 180, and then rapidly declines a little. The theory is that this decrease may not occur normally in Trisomy 21 pregnancies, which is why late elevations are associated with this condition. However, I want to reiterate that there are many many women with high fetal heart rates at late points whose babies are absolutely fine: don't want to worry anybody!

Either way, at this point, I have no logical basis for worry on this score.

In between all of this, I am, just for shits, giggles, and my own peace of mind, ordering a blood test (I have the fun task of having to arrange it myself) to rule out that the surrogate is anti-thyroid peroxidase antibody positive. If she is not (and I pray she is not, and she most likely is not) then I have nothing to do here, which is absolutely awesome.

The poor woman is also feeling really wretched; nausea and giddiness, and its so bad that I want her to keep feeling wrecked for a while....but what can you do? We've all heard the story about disappearing symptoms, though I'm sure that it has proven to be nothing in many a case.

I am starting to look at early screening (CVS), while debating the need for this level of screening.

It is so unbelievably scary when you are waiting for a baby to develop, especially when "normal development" has been applicable to everybody other than you. I mean...who has normally developing babies, other than almost everybody who gets to this point? Yet, I cannot even comprehend being that lucky. I don't even want to know when the next ultrasound will be, but I will not be able to stop myself from asking. 

A post on endocrinology, and need all your inputs about something else

First, lets get the pregnancy-related news for the day: The betas doubled appropriately, going from 661 on day 17 to 2329 on day 20.

About thyroid in pregnancy and the state of affairs in India: 
According to the studies coming out in the recent years a Thyroid Stimulating Hormone (TSH) value of over 2.5 is considered unideal for pregnancy, and is managed by giving patients a small dose of thyroid hormone(T4), and then checking the TSH, T4, and T3. The endocrinologist I saw in New York (Robert Lind, who presented with the trifecta of perfect qualities in a physician (approachabilty, keeping up with literature, and sensibility), followed the practice of keeping my TSH well below 2.5 during pregnancy. The endocrinologist I saw in San Diego also followed this practice.

Shannon, I'd love to get your take on the overall policy in the US overall about this. 

Unfortunately, doctors everywhere are resistant to change; I think they get convinced of a new practice  if they a) read a study and everybody is talking about it or b) go to a conference and a large number of their peers endorse the idea. It is only a small percentage of doctors who actively innovate as opposed to doing it by the book.

Hence, while the TSH normal range adjustment has taken in the US (enough people talking about it), it is going to take much longer to come to India. Overall, I think doctors and practices here are around 5 years behind the West, where all new ideas first most often come, which is a seriously depressing thought.

I came up against this today:It took 6 emails for my RE to give me the TSH value, which he pronounced as "normal."

When he finally sent it to me, it turns out to be above 2.5; 2.77 pre-pregnancy. Which means it will likely go above 3 during pregnancy. Ideally, it should be managed by prescribing thyroid hormone (T4) and then checking the values regularly.My RE flat out refused to do this, and  unfortunately, I think I would have a difficult time convincing endocrinologists here to do it, and I may have to manage J's thyroid levels myself (it is easy and straightforward) but still, I should not be having to do it, because I'm not a doctor. It really sucks that I have no choice.

Overall, not a good testament for medicine in India.

Infertility consulting?

Every now and then, I get an email from somebody asking for advice/help about what to do.  I realize I have a lot to offer, from explaining the treatment path options, informing them of their choices, picking doctors, looking up options (for example, finding the one place in India that provided PGD options; that was not easy), and helping them process what their doctor is telling them, and helping them figure out if their doctor is good or is taking them for a ride.

Basically, act as a consultant and get paid something for it. I would probably start out by maybe charging a 100$ per case (a flat fee).  Before I flesh this idea out any further, I would love feedback about how viable this is. Please be as honest as you want to be; what I''m really trying to figure out how many people would be up for paying a little bit more ( a drop in the bucket compared to what they pay for infertility treatments) for this.

Any business/legal advice about the feasibility of this would be welcome as well.

All about betas

The day 17 (or 16.5) beta came in on Saturday, it was 661, up from 191 three days prior, which works out to a doubling time of 40 hours.

There used to be a great website called Betabase Info; it has been down for a while now, but some enterprising person took a snapshot of it, and some other enterprising person shared it: This is the link to its snapshot on 2 separate days. Based on betas reported by a large number of women, my numbers this pregnancy are in the normal range, and are about three times the average (median beta levels on day 17 are in the 200s).

However, the thing that mildly increases my anxiety is that the levels are half of what they were at the same time point in my first 2 pregnancies (around 1200), but somewhat reassuringly, are double of what they were in my 3rd pregnancy (around 300).

God knows what will happen in the next 2 weeks. I'm firmly agnostic, but last week I found myself agreeing to go to a temple (I usually avoid it if it is impractical, or I have something else to do). This time, I consented to a 2 hour drive and prayed very fervently for this little pinprick of cells to make the transition into a healthy living being. Sometimes, that is all you can really do.

I also had the opportunity to meet Tiara in real life, and it was wonderful. She proved to be as sweet and lovely as you would expect if you are familiar with her cyber persona. Thank you Tiara for making that meeting happen. The one good thing we can say about all the crap we have to go through is that it also fosters such wonderful connections.

Slightly sheepish

Turns out, accurately assessing DPO is a bit tricky when you freeze an embryo, thaw it, and then transfer it.

I sat down and calculated, by plugging in when the embryo was frozen and when the transfer occurred, and realized that it was not the 15th day of embryonic life, it was between the 13th and the 14th day that the beta was tested on.

Going by that, the beta would be in the range the values obtained in my first 2 pregnancies.

Repeat beta is 72 hours after the first one.

This is such a rollercoaster: I'm so freaking thankful I only have to ride it indirectly.

Thank you all for your reassurances, and your good wishes. It means a lot to me.

Off the starting line...again

The results of the 2nd transfer are in; the surrogate (J) is pregnant, with the beta being 191.5 mIU/mL on the 15th day of embryonic life.

I did a happy dance (which mostly involved hyperventilation) till I realized that is a low value; my first 2 pregnancies were around 450 mIU/mL at this point, while my 3rd pregnancy (the trisomy) was in this range, being around 140 mIU/mL.

Some trisomies tend to have lower beta values, while others (like trisomy 21) can present with higher values.

I'm trying to think of everything possible to explain this; I'm tiny (I weigh just over a 100 pounds), while J could easily be twice my size, which means she has a much higher blood volume as well, which means a same amount of hormone produced is getting diluted in a much larger volume of blood----yeah---that is what I'm going to go with.  I'm so not clutching at straws, right?

The good news is this is not likely to be a twin pregnancy, which is great if it actually continues.

Off we go again; pregnancy #4 is underway. 

My super secret life (and results of the RMA-NJ consult)

It is funny how much I have going on, and so few people know about it. I'm currently in Canada, visiting family, and they have no idea what I'm going through. I sent my medical history (a mind-boggling total of 70 pages) to RMA-NJ, and nobody knows I've shed so much blood. Almost nobody I see on a daily basis knows about my D&Cs, my attempts to have babies, the fact that I have a blog visited by people from all over the world, that has made me over a 100 bucks in advertising (thank you, Google ads). When people talk about their problems, I kind of am amazed as to what I handle on a day-to-day basis without ever talking about it anymore. Anybody who leads this secret double life and goes about with a smile on their face regularly deserves applause, and I know a lot of you do so.

Anyway, getting to the meat of things:

Next transfer to the surrogate is set for Monday the 12th.

I had my phone consult with a doctor at RMA-NJ today, and it was a fun talk (I'm the only crazy person who thinks a breakdown of my problem is fun). We talked solely about the science of things, and it  is obvious that he would be the best informed and forward-thinking of any of the REs I have been to ( I seem to be collecting them, this would be my fifth RE!). RMA-NJ has a ton of studies going on, and some of them tackle questions that I've spent a while pondering, which is pretty cool.

Here are the salient points of our discussion
Turns out there are 2 roads to infertility as far as the egg goes:
Biochemical aging: Herein, the egg has metabolic issues; it divides poorly and and often does poorly in IVF. People with this issue hit menopause earlier. Importantly, this problem is correlated with the antral follicle count, and women with this issue present with diminished ovarian reserve.
Ovarian aging: Herein, the eggs may have no metabolic issues, even at an advanced maternal age. They may grow well in IVF, and women with this issue can have an abundant ovarian reserve with perfect FSH, and are often found to hit menopause much later. Yet, something is wonky with the meiotic process, and they produce eggs with aneuploidy. Importantly, this does not correlate with the antral follicle count.

The doctor concluded, based on our conversation, that my case may be one of ovarian aging, because, at a young age (early 30s) 2 out of my 3 naturally produced eggs have been aneuploid, and the first one (normal XY by karyotyping)  may have had genetic deficiencies as well, given the way the pregnancy progressed (slowing of growth between the 6th and the 7th week). So unless I'm insanely unlucky, I have an aneuploidy issue. The silver lining is that my eggs are, from a biochemical/metabolic standpoint, stellar. This my explain my family's crazy high fertility. I just have a problem that they did not have.

In other words, if you have decent AFC, decent FSH/E2, ovulate regularly, do well in IVF, get pregnant easily, but suffer from RPL, your issue may be ovarian aging. Here is the bad news: there is no biochemical test that can be done on you to diagnose it: there are no markers, nada. Since we do not know what causes this, we cannot fix this either.  The only way to sort of confirm that this is your issue is through CCS, and it will tell me if I need to go to donor eggs or adoption to have a baby.  So come early 2014, if all my transfers fail, I will pack my bags and return to the US.   

If I have to do IVF, they would put me on the antagonist protocol. The doctor expressed surprise that the microdose lupron protocol was chosen for round 1, given my AFC/AMH. Sigh...live and learn. It sucks to have done 2 IVFs though, and have to go through so much to get an answer. Had I a crystal ball, I would have gone to these people last year, and saved myself a ton of time (and money). Of course, if the surrogate gets pregnant, I'll sing a different tune! 

Yeah, I'm stressed

I went out to a comedy club last night, and it was awesome. Had a couple of glasses of wine, and I woke up this morning at 6:20 am with a sense of blind panic: what the FU*CK am I going to do, and how am I going to manage to have a baby? I've had all of these fears since the negative test, but never at such an amplified level; alcohol, which is apparently supposed to make you relax, is not so very kind the next day. Another one of biology's decidedly unfunny pranks.

I've had 3 great quality (based on morphology alone) blasts transferred, with no pregnancy, which does not bode well at all. You never know what will happen the next round though.

Coming to India to do this was the decidedly lower tech but cheaper approach. I did not think it would be this low-tech though, I thought when I came here that I would be able to biopsy the embryos, but that option was one my RE was not comfortable with, despite the tools being available. Mind you, I was well aware that this approach would not guarantee success, what it would do would be to provide a basic answer: do I have an issue with aneuploidy, and hence, have to go to donor embryos or adoption to have a baby?

There is another thing I've learned recently, and it is an interesting fact: We assume that if there is aneuploidy, it comes from the egg or sperm (and more often, may be the egg). Turns out that they have done studies which show that in a large number of cases, aneuploidy is introduced during the first few cell divisions of the fertilized embryo. This is why there is mosaicism and a high degree of aneuploidy in the day 3 embryo. As cell divisions progress though, the process appears to become more efficient, which is why some some mosaic embryos may be rescued and may even produce healthy babies.

But the point of all this is: cell culture conditions in your IVF lab may matter. Interestingly, RMA-NJ appears to have a lower rate of anuploidy in their blastocyts (32% as opposed to 50%) from some other groups. Is it something different they do? They are definitely trailblazers and pioneers, because they came up with the CCS technology (no mean feat), so yeah, that is possible.

To see if my own eggs have any kind of shot,  I've decided to go to RMA-NJ if the next few transfers fail. I've been a busy bee this week: I arranged a phone consult with RMA-NJ, I've started looking into jobs in that area, etc. Sadly, arranging employment with a company over 50 employees in the NJ area (which would qualify me for practically free IVFs) is not looking promising, not unless I go back to a university postdoc position. And if I took that, I would have to stick with it for a while. But I don't WANT to be a postdoc again. Sigh.

Btw, the costs for IVF at RMA-NJ with nothing covered comes to around 12,000 dollars plus 5000 for CCS screening. That is the higher end estimate, I could bring it down in many ways if I become eligible for any of their trials (they have a lot of those). Their donor cycles are 43,000 smackeroos. Crazy shit I tell you.

The money, and arranging it all, is giving me stress. So it would be super nice if the universe surprised me with some good luck, with making any of these next transfers work. 

Only one line

You know that moment of utter calm when you receive horrible news? Sadly, it is getting all too familiar now. The surrogate took a home pregnancy test, and it was negative. We'll still do the blood beta a few days later, but this means game over: it is the 13th day of embryonic life today, and unless the test she took was super insensitive, nothing is happening.

With a double blastocyst transfer, the success rate is about 60%. Maybe she has a discriminatory uterus, and those blastocysts were not viable and hence they did not take. This is when I desperately wish to god that I could have been in a setup where they could do the testing to determine which of my 8, if any, are okay, so we would dispense with the expenses of multiple embryo transfers and the emotional toll of all this.

I've known the transient joy of BFPs. There is a part of me that wants to run out there and get an IUI done so I have a chance of seeing those 2 lines again. But that is foolhardy; I know that despite my fear of  pregnancy, I am willing to get pregnant again, but it will only be with an embryo that I know is euploid, so I don't have to risk putting my body through the wringer again.

One of the women who used my donor sent me a picture of her son yesterday. He is so adorable, and looking at him, I so badly wanted one of my own. God knows how long I have to wait.

You know, with all of this, the one thing you need is luck. I'm had the most horrible luck so far, and I don't know how or what I can do to get it to change.

I have one question: I'm really thinking about moving back to the States ASAP now (I'm kind of afraid that none of my 8 will work, so once the transfers are done there is nothing holding me back here). Has anybody ever been able to get IVF covered in NJ, while being self-insured?

A life stuck at "pause"

It has been almost a year since I got back to India, and I think it is getting to me. This post unleashes a very long suppressed rant on life in India.  It is frickin hard living here, if you knew and enjoyed a rather radically different sort of life. Being with my family is great, my life is super comfortable, I don't have to brave the icky public transport or the dirty streets, and I'm pampered and cosseted. But I'd so much rather be doing my own laundry, cooking my own food at the end of a long day, and slugging it out all around. My social life is pathetic; I've made friends this past year, but people are so spread out, and getting from point A to point B takes hours and is such an exercise in frustration that plans often fall through.Most of the time you are so exhausted that you give up and stay home. I can't wear the clothes I want to wear: its been MONTHS since my legs were exposed to daylight, I'm so sick of skinny jeans I could scream.

I have not dated, heck I have not even flirted with anybody in over a year now (the Indian guy I was speaking to for months helped take the edge off ).  There are no interesting men around anyway, and even if there were, dating here is like speaking in a foreign language.There is this younger  (like 10 years younger) guy at work and he is constantly asking me out to things, and I always try to make it a group activity because I don't want to go out with him alone and have him get the wrong idea. Indian guys do tend to take rejection more personally. Its So Bloody Complicated  here, ugh.

And then there is rest of the reality of India. This is a country that has a few amazing and unique things going for it (mainly due to the fascinating people who lived around around 2000+ years ago).  But the India of today? It is overpopulated, over-obsessed with religion, dirty as hell, repressed, inefficient, illogical, and insane in so many ways. The traffic is a nightmare, and its made worse by many acts of utter ludicrousness; in the most crowded streets that are always clogged, cars, cycles and bikes are illegally double parked, and nobody does anything about it. I once spent 5 hours in traffic in the course of a day, getting from one point to the other within the same city. During religious festivals, people play music on loudspeakers and its so loud that your windows reverberate. This goes on for hours and lasts till past midnight. You can't call the police on them because the police may be out there dancing with them, and heck you can do anything, but you can't interfere with anything religious.  I never get to walk anywhere because everything is so icky, especially in the rains. I really miss New York in that regard.

Basically, I live my life at a state of low level frustration because of all of this stuff and because I'm  missing my life back there. I thought I'd be raising a kid through it, which would highlight the good stuff (being back with family, letting my parents letting to know their grandchild, but that is so far away and I don't know when that will ever get here. So I'm stuck in a painful pause, and I feel like my life could start moving again if one of two things happened: a) I got on the road to baby-making or b) I got out of here.

My job is one of the good things: this is a great company that is based worldwide, and it gives me an opening into a career which would make life as a single mom very easy. So I have to stick it out here for a while because of the job, and because I'm waiting for stuff to happen.

Speaking of stuff happening: I've mailed HPTs to my surrogate; I'm waiting for her to get it so she can do a home pregnancy test, which I will have to talk her through.  Like I've said, the verdict has already posted (it would be the 12th day of embryonic life today, and in each pregnancy, I've known by the morning of day 10), but I just have to wait to get hold of that envelope.  

I worked up my courage and asked my surrogate if she "felt" anything. She said she felt like it may have worked because her "stomach felt heavy." She has been pregnant a few times so its possible she may "know,"" or its just probably the progesterone effects. But bless her for saying it...It cheered me up a little at a time when I badly needed cheering up.

On a completely different note: I've saw this study from RMA-NJ; most studies report a general blastocyst aneuploidy rate of around 40-50% but they reported 32%. That is fascinating- was it a one-off thing or do they make better embryos that other clinics? That is definitely possible, I've realized; you can make many little choices which CAN improve embryo quality. I then remembered that NJ is the one of the few states that mandates IVF coverage, which made me make an important decision today: If none of my 8 embryos take, I'm going to have to go get a job in NJ and live there for a while so my IVF costs will be covered (Yes, I may be willing to put myself through this shit again). Not a fan of NJ, but the good news is, after Mumbai, the garden state looks awesome.

I've sounded like a sulky shallow(guilty!) child for most of this post, and I apologize if I have offended anybody reading. There are many good things about being in India too, even sans baby and the silly things like a lack of good-looking men and the freedom to wear shorts:  Its mostly my family, which is incredible beyond words, but there are some other things too: good food, some genuinely kind people, some really great cheap services that include affordable permanent hair removal. I'll never have to wax again. THAT is pretty goddamned awesome.