To Amnio or Not to Amnio

Although you may have thought I'd closed the chapter on the whole nuchal scan issue and have been kicking around the city gleefully purchasing new maternity clothes because I have accepted my potential fate, whatever that may be, that's not exactly true. The more I thought about the results of the nuchal scan/blood test (high hCG) the more I thought I should talk to a genetics counselor. Conversations with my sister (long time RN and currently studying to be an NP, but no background in obstetrics - besides having four kids) and searching on-line is probably not the best way to handle potentially devastating news. So, we met with one yesterday. For some reason, I thought that it might alleviate some of my concerns. It did not. I wanted to get as many facts as I could about the risk of amnio, so that I would feel like I made an informed decision not to have one. Also, I wanted to get a better analysis of my results. This is what I learned (according to the counselor):
1) There is no known genetic link to Downs - in other words, just because no one in my family has Downs and no one in the husband's family has Downs, does not mean we have a lower risk of having Downs. The risk is completely about the age of the mother. This surprised me. I have read some studies, briefly, about a potential risk between the MTHFR gene and Downs, but let's ignore that, thank you very much.
2) I will be 36 at the due date - the analysis increased my risk to that of a 37 year old. However, from what I've read, it's more like 38.
3) Although the PAPP-A and the nuchal were considered normal, the hCG was decidedly not. They want the numbers to be around 1. A number above 1 for the hCG and below 1 for PAPP-A gives a higher risk for Downs. My hCG was quite a bit above 1, but again, the PAPP-A was normal. The counselor did say that it was the hCG that placed me into that risk category.
4) When I asked what the analysis would be if you changed my age to 25 or 30 she basically said that wouldn't make any sense because the risk at 25 or 30 is so much lower, therefore, the results would be meaningless - because it's all about the age of the mother.
5) The blood tests in the first trimester are actually more accurate than those given in the second.
6) I still have less than 1% chance of carrying a baby with Downs. However, I could be that one person . . .
7) The national average for "complications" from amnio is 1/400. Complications include, but are not limited to, severe cramping, bleeding, leaking amniotic fluid and miscarriage. I've read that the risk of miscarriage from amnio is 1% - but it's hard to quantify. The hospital does not have their own averages for complications from amnio. I found this highly irritating.
8) Upon learning that the husband is a teacher, she basically went on to say what a cake job teaching is, you know, summers off, etc. This did not sit well with the husband.
9) She seemed to be pushing for the amnio because "the birth is supposed to be happy, and what if they take the baby away suddenly and all the doctors are trying to figure out what's wrong, wouldn't that be horrible?" I found this completely bizarre. Right, because even if I had the amnio and the baby was normal, that means that there is absolutely no possibility that there could be complications. Is it possible that she receives kick backs from each amnio performed? One wonders.
10) She doesn't necessarily think blood tests are great tools because you could just have a concentration of one thing in that particular blood draw. In other words, we could have had the test done fifty more times and my hCG would be normal. On the other hand, they could take the blood 100 times and one time it shows a problem, and there really is a problem.
11) I hate genetics counselors and I'm still not having the amnio.

The End.

********
I should have mentioned that we will be having the 20 week scan and we'll know more then, potentially, and the amnio is still available at that time. Again, though, the risk of a miscarriage from the amnio is still higher than my statistical risk for carrying a child with Downs.

Hello, Maternity Mega-Store!

Ah, it's an upside down, crazy world when you start thinking these jeans not only look comfortable, but down right kicky!

But am I grateful for this sudden foray into all things elastic and stretchy-paneled? You better believe it.

Moving On . . .

I'm definitely in a different place than I was a few days ago - I'm more relaxed, less hysterical. I wish I'd never had the test done - I'm not going to do the amnio - although the risk may seem minimal, if I did miscarry - even if it had nothing to do with the amnio, I would never forgive myself.

The test consisted of the nuchal scan, body scan and blood tests. As you know, it's not a diagnostic test, but merely a statistical analysis. The nuchal scan wasn't really the issue - the nuchal scan was normal to high normal. There is a nasal bone. The rest of the scan was completely normal - no abnormalities were detected. The blood work, however, is another story. I was just over normal on one and a little bit just over that for the other (hCG and PAPP-A). What further tipped the scale is my age. Additionally, according to my sister's own analysis, they used to do the nuchal translucency test in the second trimester but found that the nuchal scan was more accurate at 11 - 14 weeks (13 weeks, 6 days). The blood tests, however, are more accurate in the second trimester. She thinks I should have those redone and then also wait for the Level II ultrasound (offered to all my doctor's patients).

I've spent plenty of time on message boards in the last couple of days reading of women who had a higher risk than myself, did the amnio and all is well. Of course, there are those where the amnio confirmed the chromosomal abnormality - but that seems to not be the norm (at least in my reading). However, I'm trying to just accept my fate - and enjoy this pregnancy, enjoy seeing my child grow, whatever lays ahead. I don't have a problem, specifically, with having a child with special needs, it just will take some readjustment. But I am also not so naive as to think that it is an easy life, or the life I dreamed of for my child. Again, you reassess, you readjust, you deal. I also do not have an issue with someone who would choose to terminate their pregnancy - it's just not something at this point in my life I could do. Going through four miscarriages was difficult and I'm not willing to let this one go. I already love this child. Whomever he or she may be.

Thank you for all your comments. They are a comfort.

Nuchal @#()#*)(* Nuchal

And there I was getting all caught up in the likely non-existent lead poisoning debacle when I had so much more to be worried about: the nuchal transulcency test results. According to my doc, at my age (the practically teen aged 35), the risk of Downs is slightly elevated, but still low, considering it is at less than one percent (my google research shows 1/400 or .0025). The results of the nuchal test elevated that to slightly higher but still less than one percent (1/161 or .006). I don't want to have an amnio - I'm fearful of the miscarriage risk (although small). And I also know that at less than 1%, it's still likely (one hopes, one hopes) that things are fine. However, I'm worried that you will read this and think, "Oh, no, that is bad. I've never heard of such a high risk!" I'm worried that maybe I should have an amnio - even though I've been against it since day one. I've been reading a few other blogs who had nuchal scares - and their statics were somewhere in the 1/250 range. Shudder.

The doc seemed mellow about it, however. He indicated that some people probably would have an amnio with my results - but when pressed, said that he himself, if it were him, probably would not (the mental picture of him pregnant, was amusing). He also said I should keep in mind that he's just not the overly anxious type and he's had patients with a 1/5 chance of Downs who, in the end, did not have a Downs baby.

One minute I'm fine and sure all is well, and the next minute, well, I'm crying while trying to puncture myself with a needle filled with heparin.

Ah, onwards and upwards, dear ones. I suppose only time will tell.

Lead Paint

So, I have something new to obsess and panic about - lead paint. Yay me! I was in a "home" this weekend for about five minutes that has some serious lead paint problems. I was in another home a couple of weeks ago, also with a lead paint problem. We're very casually looking at places to buy and occasionally I come across a "fixer-upper" and then proceed to force my husband to go take a look. Of course, every time we go we shout, "Oh my gawd! This place is a nightmare" and run screaming down the street. We are in and out very fast, considering. At any rate, I've been reading a little about lead paint exposure and came across this, "No level of lead exposure can be considered safe." I'm completely freaking out that I've caused brain damage to my unborn child by looking at some horrifically decrepit "homes" that are in serious need of repair (but the asking price is so REASONABLE, cough, cough). What do you think? Don't mince words, seriously. I may even ask my doc to test me for lead paint exposure. Am I losing it or do I have reason to be concerned?

Waterlogged

We had the nuchal translucency scan yesterday. We saw him (I'm using "him", for now), the Bean, wiggling about, moving every which way, flipping over constantly and refusing to uncross his legs. We were on such a high afterwards that we went and bought a ridiculously overpriced tiny, tiny vintage superheroes t-shirt from a chi chi Upper East Side baby clothing boutique. It's very the husband. Then we proceeded to call a ton of friends to tell them about my status, including the friends who told us they were pregnant very early on and are a week behind us. They actually didn't seem overly enthused. Which kind of saddened me - but who knows? Perhaps they are mad we didn't tell them sooner and are feeling ridiculous for their constant apologies for being pregnant around us (we kept telling them, no need, no need). Anyway, although initially I was feeling fantastic about it all, it didn't take long for the usual worry and anxiety to return. I won't know for another week how the scan went. And I know that it's only a statistical analysis (blood test for markers, age of the mother, size of the nuchal fold) and isn't a diagnostic test - but it still scares me. The ultrasound tech did say that from her point of view, at least, it looked OK - and there is a nasal bone, which is also a good sign. I didn't know, at the time, what size of the nuchal fold is considered normal so wasn't able to make my own mad Google analysis (perhaps this is good?). However, I did take it upon myself to find a thousand photos of other nuchal translucency scans to compare ours - I kept thinking, I don't know, it looks too big, it looks too big. The husband did point out that as far as he knew I had not trained in ultrasound technology, but what does he know? Anyway, we'll know in a week.

Next dilemma - when do I tell the boss?

Also, is there some horribly evil person behind the whole, "drink five hundred gallons of water an hour before your ultrasound"? It was excruciating.

"Labor of Love"

As someone who has gone through infertility treatments and worked with no less than three reproductive endocrinologists, I am saddened but by no means shocked by this man's treatment by reproductive specialists, his family and friends. The author, a transgendered female to male sought treatment to become pregnant because his wife had a hysterectomy due to severe endometriosis. I in no way mean to imply that the situation isn't mind-bending, it is, and it raises a lot of questions, but no one deserves to be told that it's a good thing that their pregnancy didn't survive because it was likely "a monster." Long ago I read the book, She's Not There and one of my favorite all time books is Middlesex by Jeffrey Eugenides. Both explore sexual and gender identity and both protagonists lived a life of incredible anguish because they felt as though they were born to the wrong bodies. If he had done this so that a sibling could have had a child would the perception have been different? How many of us in the infertility community have been shunned in some way because we should "just adopt"? The author of the article, Thomas Beatie, writes, ". . . our situation ultimately will ask everyone to embrace the gamut of human possibility and to define for themselves what is normal." It's an intriguing story. Read about it here.

Birthing Plans?

So, the husband claims that I am becoming more and more irritable and is blaming it on my current status. When I asked him to explain why then I found him highly annoying upon occasion while not knocked up, he said,"PMS." He was joking, of course, and although it did make me laugh, it also gave me pause. Am I more irritable than normal? I don't know. I do know that when my sister sent a long e-mail about birthing plans, a subject she is very, very into, I became highly annoyed. I e-mailed back to try to explain that this is a day to day thing for me, my next appointment will take place three weeks after my last one (and who knows what's going on in there) and I just can't think that far ahead. Just one of the many difficult outcomes of going through infertility, recurrent miscarriages, etc. But she didn't really get it. She responded by e-mailing that she'd try to bring it up again in a month or so. I responded by telling her that if I cared to discuss it, I'd bring it up. Partially, I'm just too scared. Simple as that. You start making birthing plans, you start buying cribs, and then your world falls apart . . . I seriously may have to send people out for diapers and a crib WHILE IN THE HOSPITAL, like one of those ladies who doesn't know she's pregnant until she gives birth . . .

All I care about is the kid being ALIVE and HEALTHY. I don't care about home births, water births, unmedicated births, epidurals, pitocin and the like. There may have been a time, long ago, pre-multiple miscarriages, when I had the luxury to care about such things, but that time has past. I do care somewhat about c-sections and episiotomies (something I would like to avoid), but also told my doctor that if the baby is in distress, slice me open.

The thing is, it's needling at me. Perhaps I should care? Perhaps I should be thinking about such things (already?). Am I a bad parent (already?) If I don't start making birthing plans now? Do birthing plans even work? Isn't it better to relax and realize that you don't really have that much control?

Not to let all her wisdom go to waste (I really do love my sister, and she is a long time nurse studying to be a nurse practitioner and also has four kids, so she does knows a little something on the subject), she recommends the following books: Your Baby and Child, by Penelope Leach, The Birth Book by William Sears and Martha Sears and Natural Child Birth the Bradley Way. She strongly advocates using doulas, breast feeding until the end of time (joking, or am I?) and natural child birth. What do you think? I ask this delicately, because I know you may not be in that position right now . . .

And trust me, if this works out, I know how damn lucky I am. And will be shocked for a long while. I just feel like I'm in a holding pattern, suspended in mid-air, always, until that next appointment. It's also very weird to have my family know - and a little unnerving, frankly. Again, expectations, dashed dreams. It's hard.

Out of the Closet

I called my parents yesterday and while talking to my pops realized that they'll actually be in California next week (the magic day when I was going to spill the beans - it actually says, "Spill the beans" on my calendar at work). I tried to slyly ask if they'd have their cell phones with them but they didn't seem to know and were quite confused as to why I was asking. So, I hung up, met up with the husband who was playing frisbee and made our way to the Met to see, "Depth of Field." I told the husband that I thought either we should tell both the parental units next Wednesday, wait until the nuchal transulcency scan on the 2nd or tell them right then - because all these dates were starting to seem arbitrary. I also felt that if the nuchal scan isn't great, I'm really going to need their support. The husband, who has been chomping at the bit to tell his parentals since day one, jumped at the chance to do so yesterday. So we did. His parents who have been desperate for grandchildren for about ten years (at least) and only have one now who isn't even a year old yet, and my parents, who have four grandchildren and seemed only concerned about the fact that we were unhappy, reacted quite differently. The husband's parents were very, very reserved. My father was so thrilled he got a little emotional. It was great. I think the husband's parents are scared and cautious and don't know what to do with such information. I think my sister was somewhat annoyed that I hadn't told her earlier - but she doesn't understand how superstitions and paranoia come into play in times like these. In fact, telling them all this early is a little suspect, although also, a relief.

The post about my father was taken down because I wasn't sure if I really wanted it out there - denial is a great coping mechanism and I plan on using it for all its worth for the time being. However, I decided it's weird to post it and then take it down. So , there it is.

Pops

In August of 2005, my father was diagnosed with renal cell carcinoma (kidney cancer) and had his kidney removed. In October of 2005, he was diagnosed with a distinct and unrelated cancer, non-Hodgkin lymphoma. I became pregnant in November of 2005 and miscarried in January. It has been one of my greatest fears that however I end up becoming a parent, my child won’t know my father. He just told me today, in between joking around, that he received the results back from a CT scan and will be starting chemo after a short visit to New York, mid-May. I’m not normally a crier - well, that’s not entirely true, but at the very least, I usually restrain myself to times and places I feel are more appropriate, but most definitely, not at work. When I got off the phone - I just sat in my office and sobbed. I started to believe, that maybe, just maybe, he’d licked this thing. This has hit me like a ton of bricks.

My parents don’t know of my status. We decided to tell them at the end of next week when I reached that magic number of weeks (you know the one). I certainly haven’t lost my fears on that front either - I saw my new doc on the 12th (very elegant, very French, very anti-episiotomy) and won’t seen anyone again until the 2nd when I have the nuchal fold scan.

So, I sit, I wait, I cry, and I worry about my pops.

And Another Thing . . .

What's with these people who JUST peed on the old the pee stick MOMENTS AGO and are immediately out shopping for car seats and the best 529s? Friends of ours just told us about their pregnancy at SIX WEEKS. Two weeks before that, LITERALLY TWO WEEKS BEFORE THAT, they began buying baby furniture and rearranging their guest bedroom. Are these people insane? Are they aliens? I'm completely baffled. Meanwhile NO ONE except for you and the good people (you know, random strangers with funny clipboards) at my clinic know of my status.

Boggles the mind, really.

So, right, she doesn't post for weeks, and now she won't shut up . . .

Carry on.

The "P" word

And I don't mean "prostitute".

I’m still in this in-between stage where I don’t quite know what to think - can I get excited yet? Can I start to believe? Does the fact that I’ve met a milestone I’d never met before matter? Of course, I’m afraid, because anything can still happen . . . but it was so incredible to hear that heart beat and to see that little guy who looked so much bigger than I’d imagined. I’m going to be slightly nutty for, OK, well, honestly FOREVER. I don’t want to be one of those hovering psycho moms - but I’m starting to understand that compulsion more and more.

Yesterday was really the first day (at least in the light of day) I looked at a p______ related book. Last Saturday I found myself reviewing a section in What to Expect when I couldn’t, for the third night in a row get back to sleep (FYI - even though you are exhausted, if you repeatedly wake up in the middle of the night and can’t get back to sleep - stop taking mid-afternoon naps - even though they are delicious). I am actually beginning to let myself (for only brief interludes) contemplate how much time I’m going to take off (likely three months - although I’d like to take off six) and when, exactly, I’m going to tell my boss (something I can barely fathom). Yes, it might be premature - but in my p______ state, my mind wanders. (However I just read a note from my mother - her friend’s daughter just had a baby after four miscarriages - apparently the doctor said she was out of the danger zone only after she’d reached five months - so this gives me pause to slow down a little. But isn’t that wonderful? I’m so excited for her - and I do understand if you are not - I've known that feeling well).

I’ve also graduated to "fat pants." I’m not looking at all p______ (at least I don’t think so) but my waistbands are uncomfortable and tight. I’ve had to purchase a size I can’t even utter (I started out a little on the fatty side this time as well - I didn’t think IUIs actually worked - so I figured I had time to get the post-surgery-shingles-lethargy weight off, but hey, I’m fine with it - I’ll take it off later - and really, what I get in return is far more important than my own damn vanity, really).

Nausea has been a fun and exciting twist this time around. For awhile there - I wasn’t nauseous when hungry, only while eating or afterwards. So, brilliantly, one day, while feeling particularly green, I decided to forgo lunch. Mistake. I came home and dry heaved. In the sink.

I also can’t figure out the whole "cravings" thing. Nothing sounds appetizing, AT ALL, until one thing does COMPLETELY and then once I’ve tracked it down - it doesn’t live up to the hype. Yesterday the husband asked if I preferred a black bean quesadilla or Thai style spring rolls. I was no help at all because frankly, I was feeling queasy again. Anyway, once the husband made the decision to make quesadillas and I’d had one, I wanted, oh, say, about a dozen more. It’s frightening, really. Who is this person?

Anyway, I am still on heparin (and have the old banana looking stomach to prove it - actually, more like an old banana that’s been run over by a car). And Doctor Superman has released me into the capable hands of some OTHER doctor whom I’ll be meeting tomorrow - alone. The husband won’t be able to make it.

The big story around the water cooler here, though, involves a governor and his poor judgment. Oh, and a prostitute and money and the Mayflower Hotel. Discuss.

Measuring 9 weeks 1 day

Still in shock. Heart rate at 170 - which worries me. But doc seemed to think not a problem. More later.

Wowza

Ultrasound today: measuring at exactly 7 weeks (technically I'm 6 weeks 5 days). Heart rate at 144 beats per minute. I was, and this is a rarity, speechless. I also couldn't hold back the tears.

Doctor Superman seemed surprised, however, that I was at work last week (due to the bleeding). At the time he'd said, "take it easy" - I didn't know that he meant not to go to work. This time he again told me to take it easy, that this is a critical time, etc. I didn't think to ask him about the photo shoot I have scheduled tomorrow - I'll be on my feet for one to two hours. So, now I don't know if I should cancel or not.

I am equally thrilled and stunned. We're still far from being out of the woods yet but we've graduated. I have to make an appointment with a regular (albeit high risk) OB.

Not that long ago, when I told my sister that we were moving on to adoption (which we still want to do) and to stop harassing me about getting pregnant again, she e-mailed me back and said, "Miracles do happen. Who says they can't happen to you?" In a couple of weeks, I'm going to e-mail her, with these words, and these words only: "Miracles do happen . . . " She'll instantly know. I am sure of it. And I can't wait.

Exhale, exhale, exhale.

1st Scan

Scan showed a gestational sac and it is measuring appropriately. Doctor Superman thinks the spotting is from an irritation of the vaginal wall as there was no detection of a problem internally. I'm a little perplexed as to why there was only a gestational sac and no yolk or fetal pole but the doc did not seem concerned. Of course, I'm worried. I have another scan in a week. He made three seperate illustrations: 1) with only the gestational sac, 2) with the sac and yolk sac and 3) with the sac, yolk sac and fetal pole. He indicated that this is generally the progression. If we still don't see anything at the next scan, that is likely problematic. In my last pregnancy that made it this far, we saw a heartbeat. Again, worried.

The husband cried like a baby.

I've never been so thrilled to have to make a trip to the in-laws.

Thank you for all your kind comments.

I'll be holding my breath all week . . .

(I'm considered approximately 5 weeks 6 days).

Game Over

I have no cramps, my breasts still hurt and my temperature is still elevated, but it's turning red. Bright, bright red. I have a scan tommorow, but . . .

When I used to read other people's blogs who miscarried multiple times, I couldn't figure out how and why they kept going. What drove them? Why would they put themselves through it time and time again?

I'll tell you. Hope. You think, it couldn't POSSIBLY happen again. And love. You think, I want to see a little face that reminds me of my husband. And . . . denial. You think, it's not happening again, even when it is, right before your very eyes.

Five times. FIVE TIMES.

I made a deadline for myself to have the initial application with the adoption agency done by January 31st. Then I got pregnant. And then there was hope. Everything looked good - I actually produced eggs on Clomid! More than one! My lining was great. The IUI went smoothly. I took a home pregnancy test and got a faint line. And every day that I took another test, the line got darker. My hCG was high. My progesterone was higher than it's ever been. I stopped running. I cut out soy. I ate fish (I'm normally a vegetarian). I shot myself twice a day with heparin. I took baby aspirin, folate and prenatal vitamins. I drank hormone free milk. And orange juice. I went on walks. I tried to think positively. We visualized a positive outcome. I let myself think about the possibility of twins. TWINS! And yet, still . . . again. Same old story.

We are supposed to be going to the husband's hometown for his mother's birthday. I'm bailing out. It's difficult for me to be around a baby right now.

I wish I had more to say. But, I can't really get my head around this. When I came into work today, I went to the bathroom, came back, and noticed that I had spilled water all over my desk, my chair, the floor, my pant leg. I'd been walking around like that for a good twenty minutes and hadn't even noticed.

Spotting.

Again. I've been trying to be cautiously optimistic . . . but . . . now . . . this.

I'll meet you over at the Prozac dispenser if this goes where I don't even want to mention.

And the only thing to do now is wait.

Finally . . .

I just threw my intern out of my office so I could call and find out if there were any results. The nurse said, "Yes, I just got those and I'm going to have the nurse practitioner call you and explain the results and what you need to do next but you are pregnant, and your hCG is 358, which is pretty good." My hCG was taken from what I'd estimate as exactly 14 days post ovulation. My progesterone was at 57.38. I've actually never had a progesterone at that level - and that seems insanely high. I am on progesterone supplementation, however. As I am want to do - that makes me slightly nervous. So, I guess next stop is to get another hCG done.

***UPDATE***

Your encouraging comments mean the world!

I just got off the phone with the Physician's Assistant - who left me a message about getting my second beta within 48 hours from the last, on Thursday. I phoned her back to make sure she understood that the initial results were from Saturday - not today. She hesitated and then told me that perhaps a second beta wasn't really necessary - she felt that these numbers looked good, etc., etc. - something about it being more difficult to tell the doubling rate when it's more than 48 hours. I then explained a little bit about my history and she then said that I would be treated the same even if the beta wasn't doubling properly (progesterone, etc.) and so there was perhaps not much of a need. At first I was OK with this - now I'm starting to get more and more anxious about it. However, I imagine that if Doctor Superman has an issue with this, he'll call. In the meantime, I just wait. I know, crazy.

No News is Good News

By 11 AM yesterday with no news, I was about ready to jump out of my skin. So, I called my doctor's office and they didn't have any results. I then called the blood draw clinic and they didn't have any results either. Every time my cell phone rang at work (which seemed to be about a million times) my heart leapt out of my chest. It was excruciating. By the end of the day I was totally keyed up and freaked out. And I yelled at a friend of mine and called him an idiot (perhaps I should apologize? I'm thinking about it). In the past, I may have had good news only to be followed up by bad news - it's really not a wonder why I became totally and absolutely anxious. Anyway, who knows when I'll know? I'm trying to forget about it, for now.

So, ummm, go Giants!

Groundhog Day

So fitting that today is Groundhog Day, as I go do my duty and get yet another blood test. And I thought, as I was sitting there, that I could practically do this myself - you know, take my own blood, test it, and be done with it. So, I've decided that I'm going to devise a kit, a home pregnancy BLOOD test for all those infertiles out there. Lord knows I've done it enough times.

Anyway, I won't know the results until Monday. Spotting has seemed to cease. Awoke with terrible cramps however in the middle of the night. It's always something.

Trying to take it one day at a time . . .