The Whole Weekend Post

I got an email from an exceedingly kind woman/PhD in genetics/expert in chromosome biology this week that managed in a few succinct paragraphs to utterly turn me sideways on the necessity of having CVS done this time around. Considering the fact that moments prior to receiving this message I would have put my personal need for early prenatal testing second only to the zeroth law of thermodynamics in terms of that which is inviolate, it was really quite an impressive feat. I guess I am just a sucker for an impressive curricula vitae, a few pretty compliments and the use of the phrase "the translocation quadrivalent segregated 3:1 in meiosis" followed by a Lemony Snicket reference.

I would only embarrass myself if I attempted to recreate her elegant prose, but the gist was that PGD is much more reliable than I think it is. So, to paraphrase, if the embryos look like ducks and quack like ducks and PGD'd like ducks it is not entirely unreasonable to consider NOT defenestrating them just to prove they might be ducks.

More so than the remarks of a friend of mine (*) I found many of your concerns and suggestions quite helpful.

Let me back up a bit first and explain where I am coming from, in general. Although I know that choosing between a second trimester termination and a third trimester stillbirth is not the worst thing that has ever happened to anybody it is, quite definitely, the worst thing that has ever happened to me. Yes, the majority of our abnormal fetuses died before twelve weeks but one did not. One survived despite really significant problems and it was unclear how long he would continue to do so. Days, weeks, another month or two? There was zero expectation that he would survive to be born, but how long the pregnancy might continue was anybody's guess. So as much as I kept repeating no no no I don't want to do either no no no, please, no we had to make a decision. To this day that experience reigns for me as the most traumatic of my life. It was... it was HORRIBLE. I was in physical agony and sad beyond belief and I felt alone and helpless and ashamed. And I am absolutely certain that I never want to go through that again. Short of giving up on children altogether (which at the time would have meant that Patrick would never have been born), I vowed to do just about anything to avoid a repeat of that misery.

So early prenatal testing is important to me, perhaps in ways that those who have not been in my place cannot quite understand. Of course I do not want to endanger a healthy pregnancy any more than anyone would (even less, if that were possible, because they are so hard for me to come by) but the ramifications of not getting early information are still very real and raw to me.

Under normal circumstances (that is to say, a non-PGD'd pregnancy) I would never consider not doing CVS if it was at all possible. I opted for amnio rather than CVS one time and... well, we just talked about that. It is not a gamble that I am ever willing to take again. Not only is the worst-case scenario so freaking terrible, the risk of it happening again are quite real. We are not talking about the more familiar odds of an over-35 year old woman who is the typical candidate for prenatal screening and testing. We are not talking about what I would or would not do to avoid a 1-in-200 chance of raising a child with survivable defects. That is not our problem and frankly I am glad it is not because I think that must be very hard in its own right. When Steve and I approach CVS it is with the understanding that statistically we have a 50% chance of detecting a lethal genetic arrangement and anecdotally our experience has been that such a defect has existed in excess of 90% of the time.               

However

We did do PGD. Unlike an unassisted pregnancy we do have some reason to believe that the embryos are just fine. The question in my mind, though, was how much reason was it, really? Having been burned by PGD results in the past I was seriously hesitant to put too much faith in them. Which is where the nice email came in so handy. Although both REs and my PGD guy have assured me that PGD testing is actually pretty damned good I felt that they had reason to mislead me. Like the blasted commissioned saleswoman who assured me I was FABULOUS in that red dress (hint: redhead. possible but not bloody likely and in this particular dress most assuredly not), I felt that they might have ulterior, possibly mercenary, motives. But a random reader who just happens to be chockful of useful information on the care and feeding of chromosomes? Her I can believe.

So once I ratcheted back the risk scales a bit the dilemma changed. If the embryos are, in fact, less likely rather than more likely to carry unbalanced translocations, the need for CVS becomes a little harder for me to assess. Which is where the rest of your comments proved helpful.

Originally your suggestions for scans and NT screens were greeted over here with a sigh of regret. Because the proven relationship between increased nuchal translucencies in the existence of the more common trisomies does not exist with our translocation. There are so many billions of possible weird little genetic combinations out there asserting themselves in all kinds of random phenotypical ways that it would take thousands of lifetimes to track even a tiny portion. In other words, there is no research that says that the absence of an increased NT means anything at all with our translocation. However, as a few of you noted, we DID see an increased NT (and cysts in the brain) at least once around eleven weeks and possibly twice. Soooooo... what the hell. Why not err on the side of optimism this time? (huh. I realize it sounds ludicrous to describe recognizing the possibility of identifiable defects as optimism but work with me).

I cancelled CVS and scheduled an NT screen instead with the understanding that if there are any obvious anomalies we will do CVS immediately. And whether one fetus or both looks odd at that point will determine who performs the CVS, so much so that I am not even going to worry about it yet. The compassionate doctor will do the NT screen and we'll go from there. I could explain the logic of using the more ethical practice but I am afraid it will sound rather clinical and I do not want to offend anyone, so I will not.

All of which is to say: change of plan and thank you very very much for your comments. They really helped me to make what I think is the best decision for us and I quite literally would never have reached it without you.

++

Patrick spends about seven hours out of every day making up riddles and then sharing them with me. If you just winced, thank you. If you think this sounds cute send along your phone number and I will have him call you instead.

It all started with a box of popsicles that had riddles on the sticks. Patrick thought he could do better. Some of them are actually pretty good:

Where does a bear park his car? In the Grrrrrr-age.

How does a cat cut the grass? With a lawn meow-er.

What was the kitten's favorite TV show? Deadliest Cats (thank you Steve! now I know what you guys do down there when I am cleaning the kitchen after dinner)

A few are rather esoteric:

What did the cat say to the dog? Bark!

Some make no sense whatsoever:

Why did the tree grow? Because he thought he was in Afghanistan!

And finally there is the new genre introduced by his three-months-older and slightly more sophisticated West Coast cousin, the bathroom joke. I will spare you the details but the punchline is always a variation on: because he wanted to pee on him! Ho ho ho.

++

Ah, Patrick. Now that I have the three/four years almost behind me I feel qualified to say, man, that is a freaky little stage, isn't it? I was looking at some pictures from the past two years recently and each one was... oh, there's Patrick with his beloved American Heritage dictionary! aw, there he is with a pencil in one hand, a calculator in the other and an insane gleam in his eyes! I have often wondered why I shared so much of my angst with you about Patrick's oddness when it was more often than not met with loud sniffs and muttered rumblings about obnoxious bragging, but as I was looking at these pictures I can understand my weak need to confide. It WAS unnerving. He was weird.

I have spoken to a lot of preschoolers by now, though, and I have concluded that they are all weird. Patrick has a friend at school, a very nice bright kid named Odin. Over the past year Patrick was bringing home increasing amounts of information about dinosaurs, a subject in which he had previously shown zero interest.

"Where are you getting all this stuff about dinosaurs?" I finally asked, curious.

"Odin."

"Oh, so Odin knows a lot about dinosaurs does he?"

"Mommy," said Patrick with an emphatic hand gesture, "Odin knows TOO much about dinosaurs."

Every time I think about that I laugh. I remember writing a post two years ago about Patrick's alphabet obsession and people wrote in to talk about their similarly aged children's single-minded pursuits. The two that stick out for me are the little boy who was fascinated by the skeletal system and the little girl who would go around the house with crayons trying to match the specific colors; not blue, you understand, but peacock vs prussian.         

I kept wondering when Patrick was going to start reading less for the pleasure of stringing sounds into words and more for content. He has had picture books he likes to read (Bad Kitty springs to mind. we recommend it) but it took him a while to connect an interest in a subject (say black holes) with a desire to read about it. A few months ago he developed a passion for poetry, mainly the works of Shel Silverstein but anything remotely funny and directed at children will do. From there he has spread into other things, science and nature books for the most part. There is a series of books on animals (Why Do Snakes Hiss? Why Do Birds Sing?) that he is enjoying right now (provided I can keep finding more at the library and provided he stops wanting to then acquire said animal as a pet. a snake in my house? not. going. to. happen.) For thirty glorious minutes on the flight home from South Carolina Steve, Patrick and I all sat in a row silently reading our respective books. It was a consummation devoutly to be wished.

Other than that he is all about Legos and racing Matchbox cars and finding bugs outside. He lucked into a very obliging catepillar he named Celea that we set up in a jelly jar and who promptly spun a coccoon right before his eyes. I felt a sit-com mother, what with all the childlike awe and wonder.

He is starting the Montessori camp this week and I hope he likes it. I still don't know what to do about the Y camp, though. I talked to a friend of mine this week whose daughter has taken a few Y classes with Patrick at our branch (which also staffs the camp) and when I mentioned that I was thinking of sending him for a couple week-long sessions she asked, "ARE YOU CRAZY?" She then proceeded to remind me of all the half-assed supervision we have witnessed: her daughter repeatedly running across the balance beam and falling each time while the teacher sat in the corner until the girl eventually split her lip; the art class in which the instructor was on her cell phone and the kid poured an entire bottle of tempura paint over his head; the sports class where the more agressive kids would take turn after turn while the younger/more timid children waited for a ball that they never got; the scary swimming class in which twins lost their grip on the edge and dragged each other underwater for one terrifying minute while their mother raced for the pool area and all the other parents pounded and kicked on the glass wall trying to get the attention of the instructor or a lifeguard or SOMEBODY (I just got choked up writing that. it was terrible.)

It was sort of nice to have somebody from my very specific reference point confirm that my fears concerning this camp are not entirely irrational. And caveat caveat I am not saying that ALL Y programs or camps are dangerous open mine shafts etc, just that SOME of the people running A FEW of the programs at THIS SPECIFIC facility have indicated a laissez-faire attitude toward their charges that does not settle well with me as I contemplate extending the times involved from 40 minutes to 6 hours and I will no longer be sitting right there.

You know what? I think I will cancel it. Whether he has the time of his little life or not I am clearly going to be a basket-case. I'll throw in a few extra weeks of Montessori (if he likes it) and we can do the Y camp next year after he has kindergarten (this school starts all kindergartners at half-day and then transitions them individually to full-day as the year progresses, which I think is awesome) under his small belt. Good. I feel better.

++

I am writing this over the course of two days, can you tell?

Ultrasound tomorrow at 10:30. I am not sure what I am expecting. I admit that I was not surprised to see everything looking ok so far, since good initial levels have usually given us expected growth in the beginning. I will be 8w2d tomorrow, though, and I guess I am prepared for anything. I have been spotting (brown) off and on for the entire week and while I still don't feel like it means anything I guess it might.

I'll post after the ultrasound at REDBOOK.                        

Comments

[Janis]

I know this probably won't mean anything to you as our situations are vastly different..

I Had a major bleed with my twin pregnancy. As in I stood up to go to the bathroom and turned everything beneath me a flood of red. Bloody trail to the bathroom, toilet full of blood.

I bled on and off like this for nearly three weeks. No reason for it, nothing showed on the ultrasound scans. Peri could offer no cause nor solution.

Heavy bleeding then was followed by weeks of brown spotting.

Weekly scans did nothing to make me feel at ease. It was more like, well, they are alive today, nothing promised about tomorrow though..

As I sit here typing this out, my twins are in the kitchen throwing carrot sticks at each other and painting the table in an intricate design with ranch dressing. Screams of "It's not me" are echoing about the main floor.

I guess what I'm trying to say is that sometimes, even what seems to be the absolute worst turns out to be nothing more than another attempt to break one's sanity. You'd think god, the universe, mother nature would take a fucking break now and then.

Hopefully in the not to distant future you'll have the joyous chaos that only twins can bring.

I have to go now, Caleb is stuffing carrots in Livia's underwear and she doesn't sound too happy as she is screaming "Caleb, there's no damn dressing in there!"

Toodles!

[Jen]

You know, at my Y camp, one rainy day two teenaged counselors decided that it would be fun to mummify me in toilet paper. It is one reason why I will not send my son to our Y camp, unless shown compelling evidence that he would not be similarly used for cruel amusement. So I think in this case your gut is right!

As for the CVS, I think your decision is eminently reasonable. I hope your next few weeks & NT scan are gloriously, boringly normal. You're in my thoughts.

[robin j.]

I am interested in the logic of choosing the more ethical practice!

[Nicolle]

Pre-schoolers are weird. Julia, for the longest time could only abide midnight blue. and I mean relative to everything containing a choice. She once asked if we could use food coloring in her food so that it wouldn't do something as disgraceful as to show up on her plate and be red.
Weird.
Glad to hear you found comfortable answers to your queries.

Nicolle

[Jen]

Oh my on the Y. Those specifics you quote? Yikes! Next year at the earliest.
If he's not even going to K full-day, it's not like you need to get him ready for that. And honestly? The getting them ready thing has some points to it, but then again, they'll be ready when they're ready and doing it before they're ready doesn't speed that point up at all.

[Ann]

"Although I know that choosing between a second trimester termination and a third trimester stillbirth is not the worst thing that has ever happened to anybody it is, quite definitely, the worst thing that has ever happened to me."

I am so very sorry that you had to make this choice. All of this constitutes some of the worst things that any of us have to deal with in our lives. I had a full-term stillbirth, a second trimester termination, a second trimester miscarriage, and then learned that I'm not a viable candidate for PGD using my own eggs. It's not that we can put this all on a continuum of worst to best. It's all awful and very hard. We must support one another through this.

I wish you all the best with this pregnancy. You probably have many more people living at least a little vicariously through you than you know. And supporting you, too, of course!! Cheers to you, Julia. I think you're very brave.

Ann

[Audrey]

Good luck with the ultrasound tomorrow--and I'm sure Patrick will do fabulously at the Montessori camp. That Y story about the twins in the pool? If I'd seen or heard about that, I'd be leery of that specific facility too.

[JuliaKB]

Oh, good-- I was beginning to worry with no post in either place. Will be refreshing like a mad woman tomorrow.

I might have killed someone if I saw those things at the Y. Definite no on the camp.

Echoing the wishes for all kinds of uneventful goings on all the way until an easy delivery.

[May]

Hi, I don't comment often, but I found this description of your thought process on PGD and CVS very interesting. I, too, am the type of person that likes to get every scrap of informtion possible of each of my pregnancies (I am a scientist, and it shows). I'm glad you have found a plan that you're comfortable with, and for what it's worth, I think it's a sound one. Best of luck. And may I add, if you do wind up with a single child as a result of this pregnancy, I firmly believe it was that poky old morula. Fingers crossed for healthy twins though.

[teki]

I completely understand about the joke phase, my daughter had the same obsession. Her favorite "why did the chicken cross the road? to get to his chinese underwear!" Worst, completely non-sensical joke ever, but boy did she laugh every single of the 10,000 times she told it. Where did it come from? no idea, I'm guessing around that time we bought new underpants which were made in china. She loved to find where things were made and it tickled her to no end her underpants were made in china. She would be so entertained by her own humor and she had the best laugh. As she enters the tween years, I miss the silliness and broad laughter. Have fun!

[Amber]

Is it wrong that I kind of wished you would have broken this post up into 3 seperate new entries, on different days? I mean, now I read it all and I am not sure where to go tomorrow morning, since I am sure you wont have posted while I sleep. hmmm, drinking my morning cup of coffee to someone else's blog seem like I am not being faithful. but I fear you have left me no choice. :)

at least I will have REDBOOK in the afternoon.

[Anjali]

Best of luck, tomorrow. I think I've learned more about prenatal testing/reproductive technology in this post than in any book.

[Ersza]

Julia--I, too, have an advanced degree in a related field. What many people don't understand about PGD, and prenatal genetic testing in general is that it can only detect some of the most obvious chromosomal defects. It can detect your balanced translocation. That's easy. However, you have had way more miscarriages than you should have based on that. You should be having successful pregnancies half the time, by my calculations. (Am I right?) Anyway, one out of twelve is right out. There is most likely some *other* genetic problem going on between the two of you that is complicating the situation even more. All currently available prenatal genetic tests including CVS, amnio, and PGD, are based on taking a very large-scale look at the chromosomes to see if anything is obviously wrong. However, a genetic error that is very small can be *just as lethal*. This is what you can't detect with CVS. This is probably why your previous PGD failed. The embryos were probably free of the balanced translocation as advertised, but most likely suffered from some undetectable genetic problem. This issue also makes me wring my hands when a woman cries about getting back "genetically normal" results for a miscarried pregnancy. This does not mean that the lost pregnancy was a healthy baby. It only means that it didn't have a certain set of detectable aneuploidies. What a lot of grief and self-blame the words "genetically normal" have caused! What I'm trying to say here, and what I think the emailer was saying, is that CVS or amnio isn't going to give you different results than the PGD. And neither of those will guarantee that your pregnancy is free of genetic problems that may be lethal.

As regards the termination vs stillbirth issue, this is obviously a hard choice. I did check out your archives on this, and it seems to me the most traumatic part of the experience for you was trying to get some control over the situation after you received the terrible diagnosis. I have not been through what you have, so I wouldn't presume to advise you on how to deal with the emotional journey of such a loss. However, there are a number of blogs and stories online written by women who have made the choice to continue carrying a child with a lethal genetic defect. That might be a helpful place to look in allaying your panic over the "worst case scenario." Knowing that someone else has been through it and that they are okay, or even somehow found meaning in it, is something I hold onto in hard times. And I am no stranger to loss, or to extremely difficult situations that very few people have experienced.

I am so happy for you, and I hope you can find some peace and joy at this anxious time.

[WendyP]

I was thinking the Y camp would be a bit, well, unstructured, but not all Lord of the Flies and dodging flying harpoons. Good decision.

Here's one for Patrick: Why did the chicken cross the road? To see the man laying bricks.

Re: babies - NBHHY. I'm thankful, and happy for you, right now.

[Denise]

"For thirty glorious minutes on the flight home from South Carolina Steve, Patrick and I all sat in a row silently reading our respective books."

That is my fondest dream. I don't think I've read a book for the last 3+ years unless both of them have been asleep.

[Julia]

Ersza,

Thank you for the interesting comments.

To clarify: the first PGD pregnancy did carry an unbalanced arrangement of chromosomes 1 and 4 according to the genetic testing done on the POC. We did not have testing done on the second PGD miscarriage so we do not know what was going on there. Still, the fact that 1 out of 2 PGD pregnancies actually carried the only thing for which it specifically passed was enough to spook me. So, in that case the pre- and post-implantation genetic results were actually different. To your point, though, the emailer was explaining how rare that is.

As for the termination, the events last spring were difficult and stressful, but not what was I was talking about in this post. The recent brush with termination (we did not, when all was said and done, end the pregnancy because the fetus was already dead) was what I would consider to be a success in the relative scheme of things. We did CVS and the results were bad, but we found out early enough that a few avenues were open. What I am referring to occurred six years ago and trauma involved state legislation that gave us less than 24 hours to decide what to do and a complete lack of pain-killers. It was hard.

It is very very possible that I would choose to continue a genetically abnormal pregnancy rather than end it, should I ever be in a position to decide again. I am older now and things that I once thought unbearable I have subsequently learned can in fact be borne. It is one of the very nicest things about aging, I think. Perspective and scope and a better understanding of one's own strengths.

Anyway, just wanted to better explain those two points. Thank you for your thoughts.

[Diana]

I'm so glad you decided to pull the plug on the Y camp. I didn't like it from the first time you described it and now I like it even less. It seems like a lot of commenters wanted to make the issue about you and your fears, but I think your instincts are right-on. I was actually a little anxious thinking he was going!

[Liza]

Ugh, I felt physically ill when I read about those kids dragging each other under--their poor mother! I have a phobia about kids and water myself--the bathtub scene ruined A Beautiful Mind for me completely (and it had Russell Crowe! And broken brains! I should have loved it!). All of my kids bathed in the sink-top baby tub until they were...oh, I don't know, nine or ten months old. I never leave a child unattended in the tub. But one time my eighteen-month-old was in the tub doing that thing where they lift their legs up while sitting and shriek happily and fell backward, and I had been standing over the bathroom trash cleaning my hairbrush so that it took me, realistically, probably about three-quarters of a second at most to get over there and snatch the startled baby to my bosom. I was a wreck that entire day. But two children? At once? In water deeper than their belly-buttons? Shudder.

My kids get fixated on stuff, too. Like that time my oldest got Daddy's version of where babies come from after a bathroom-related question, and Daddy duly got out my copy of Gross Anatomy and explained the male and female genitourinary systems, except that poor Daddy is dyslexic (and was sweating bullets to boot) and was actually on the page with the urinary bladder on it, thinking that it was the uterus because of the word "Ureters" at the top of a container-looking organ...Daddy quickly realized his mistake and corrected it, but the end result was a child who was convinced that babies and pee come out of the same hole. And was obsessed. With. The babies coming out of the pee-hole. Exuberantly so.

Letters are nice.

[Meegan]

I enjoy reading your blog so much, but I rarely comment. I just want you to know how much I'm hoping/wishing/praying that this pregnancy is viable, that these twins are healthy. My infertility "struggle" was solved with a few rounds of Clomid, so I have little frame of reference. (I know, not so much of a struggle, hence the "".) But it was during those months of assisted ovulation that I found you. Your writing style is so lovely, honest, factual and emotional, I've been a diligent reader ever since. I'll be thinking of you tomorrow as I take my beautiful 9 month old daughter to the doctor for her wellness exam.

--mms

[Caris]

Yay for the weird joke phase! My daughter was crazy for hinky-pinks for a while, those synonym pairs that turn out to rhyme. (What's a topical pachyderm? A relevant elephant.)

She's 8 now, and still has plenty of quirks - I don't think those end after preschool. But the quirks are part of her charming personality, nothing to worry about. (I hope.) She likes to spend time alone, probably because she's an only child She makes elaborate plans for large banquets - she pores over cookbooks and makes formal menus, sometimes in French. Which isn't that weird since my sister is a French professor. Plus, a lot of the cookbooks are in French. Well, whatever.

She also loves old MGM musicals, and is always using odd, old-fashioned phrases like "Shall I fetch you a ...?" or "I daresay you're looking rather..." She is definitely never going to be one of the trendy Hannah Montana girls. Which may cause her a certain amount of angst at some point. But I figure, if she keeps up the banquet planning, she'll probably always have plenty of friends.

Anyway, continued best wishes to you!

[Christine]

Goodness, hoping so many happy thoughts for you over here and for a gloriously normal, run-of-the-mill pregnancy in which you need to describe to Patrick the glories of babies and how they're "made."

Also? Probably an excellent decision on the Y. Holy moly.

[Jodi]

I have my fingers crossed for your ultrasound.

I know it is no consolation, but I wish, wish, bloody WISH, that there was a test (any test) that would help me know that my pregnancy was ok before 20 weeks. I'd do it in a flash.

That's how long I have to wait until I know if the neural tube is, after all, *closed* all the way along. And the second tri termination last time sucked quite enough as it was.

Mind you, at the moment it's a moot point. I'm still just as infertile as I've ever been. Sigh.

Good luck again.

[Heather]

Hi. I'm about 10-weeks along and facing some siliar circumstances. I want to know as much as I can as early as I can, too. I had CVS in my first pregnancy and was so relieved when the results came back ok. I was finally able to relax and enjoy the idea of being pregnant. This time, my husband is 100% opposed to CVS. We've agreed to do the nuchal translucency test, followed by amnio. I hate waiting, I really, really do.

I hope all goes well with your ultrasound. I'll be thinking of you this morning.

[JenM]

Good choice on the camp.

Read your comment above, that one of the PGD'd embryos had the translocation - that would throw me for a loop too. Sorry you have to deal with that extra bonus mindfuck on top of what is already a difficult situation. You will make the right choice. I am hoping hoping that everything is OK and reloading at redbook furiously.

[Candy]

Julia, I always enjoy reading your posts and am usually ecstatic when you've updated. Even though I know absolutely nothing about infertility and the tests you speak about are just a series of alphabet-codes, I read every word. So I can only say, I have all fingers and toes crossed, even though I have no idea what tests you're having or what they mean. just...go, you!

BUT, I have raised a couple of pre-schoolers, so I can speak to that! I think you've made the right decision about the Y. That place sounds like a nightmare.

I think Patrick sounds like an amazing child. I will tell you that my now-14-year-old son showed an astounding aptitude for math at an early age. He did complex addition and subtraction in the first grade. I thought I had a prodigy on my hands. Turns out he was just early. At this point, his math is better than average, but he's no wizard. Some things just always come out in the wash, I guess.

[Caroline]

Hi! So many thoughts in that last post, it's hard to know where to start ... The stuff about 3 and 4 being weird years is too, too true, but my daughter seems totally unlikely to let me read for longer than, oh, four minutes at a time - so I envy you your 30 minutes of self-entertaining. My kid loves to read, too, but she insists on SHARING everything she's reading. And if I'm not paying attention, she wants ME to read it to her. I live for the day she wants me to go away already, can't I see I'm embarrassing her to death?

Also, I have to giggle about a typo. The paint is TEMPERA. TEMPURA is the Japanese fried food. I had a visual of someone dumping shrimps on their head, followed by udon noodles. Perfect!

Re: Y lifeguards. I lifeguarded for years, and in retrospect, I didn't take it as seriously as I should have until I hit age 20 - 21. After that, I was completely paranoid that someone would go under on MY watch and I would be wracked with guilt for the remainder of my days. Basically, I would never consider the presence of a lifeguard as a reason to abrogate my responsibility to watch my kid in the water - which many people do. I feel a blog post coming on about this very topic, now that you mention it.

Can't wait to see the REDBOOK entry!

[Julia]

Not that you need my approval, but that sounds like a perfectly logical plan. I'm pulling for ducks.

[cursingmama]

Never underestimate the power of mothers intuition - clearly your Ycamp is not the same as my Ycamp and I wouldn't chance it either.

Good luck with the ultrasound!

[Leggy]

What a stressful situation to deal with- CVS, NT, amnio, second trimester terminations, stillbirths, etc. No wonder this is something you analyze in depth. I'm glad you found a path that's comfortable for you, but more than anything, I just hope these guys are totally 100% genetically normal. Good luck on the ultrasound.
And yeah to weird preschoolers. My son is obsessed with wearing costumes to the park- EVERY. SINGLE. TIME. we go. And he tells jokes that make no sense.

[wealhtheow]

I'm keeping my fingers (and toes and various other appendages) crossed for you.

[Pam L]

Wow, such a long post it's hard ot remember what to comment on. Well, the Y swimming incident does it for me. I have never seen a children's swim lesson without the instuctors in the water with them and a life guard above watching so I have never seen or heard anything like that. Now having heard of the lack of attention/supervision at the Y I would draw the same conclusion as you on their camp. Perhaps another camp at another time in the future. As I said, there are many short term interesting things for kids to do throughout the summer that won't scare their parents half to death.
And regarding the ultrasound only, based on the expert opinion you got, it sounds reasonable to me. We were offered amnio while pregnant with our second son due to my advanced age ( I was only 38!) because the genetic counselor, after throwing our statistics into the barrel and giving it a spin, determined my actual "age" for this was 39. 39! One year older genetically. I declined also not wanting to chance anything that took so long to happen and was my last attempt at a second child.

[Sally]

I respect your bravery, Julia - it must be difficult to pass up a test - any test - where even just a smidge more peace of mind could be gained. Although, now, after reading Ersza's comments, I feel silly for feeling SO peaceful after I received my first normal CVS results. I feel fortunate that it actually did turn out ok.
I would be interested in reading some of the blogs that you mentioned, Ersza. It never occurred to me to let it play out when I would get abnormal results, and I'd be interested in reading a different perspective. It seemed each time, for me, that option would only result in agony (although it would alleviate the agony of trying to arrange a termination in the Midwest). I couldn't imagine the pain of actually feeling movement, knowing the inevitible outcome - that was my biggest fear, and the biggest reason I always chose CVS over amnio. I'd appreciate any links. Thanks!!

[sheilah]

ODIN!!?? Really? I know you live in Minnesota, but did someone really name their kid Odin??

[Karen]

Julia,

Thanks for the meaty post for us to read on a Monday morning. You have been thinking a lot! ;-)

I want to caution you about the "NT scan," because I'm not sure I understand exactly what that means. If it means that your OB will take blood and measure alpha-fetal protein as well as look at the nuchal translucencies of both babies, I want to say WAIT! The AFP will be totally skewed by a twin pregnancy and you will get a report back that is alarming and sends you straight to the neonates for an amnio. If you mean that you will keep your blood in your arm and merely look at the u/s images, that will make me feel a lot better, LOL.

Wishing you the best for this morning's u/s!

[Libby]

Sofia also loves jokes that make absolutely no sense. My husband told her the "knock, knock" one. Since then she says it all the time but changes the punchline to something crazy. She laughs histerically every.single.time.

This morning she got me though. She told me "why did the chicken cross the road?" and I go why? (expecting some crazy nonsense)and she says: to get the the other side!

I'll be thinking about you this morning and wishinging fervently that all is well with the little ducks.

And Caris, your daughter sounds amazing. I would totally love to go to one of her banquets!

[Garnigal]

I love books, particularly children's books, so despite the length of the post, all I remember is Patrick being particularly into children's poetry. I'm not sure how widely known he is in the States, but if you don't already have it, I recommend anything by Dennis Lee. Garbage Delight is he most famous, but I always loved Jellybelly.

[Aurelia]

Julia,

I'm sorry you have had to face those kind of odds, and as a woman who has had to do similar kinds of odds before, I get it. Completely. As of right now, my odds of a chromosomally normal pregnancy are only one in four, considering my history and current medical situation. Society judges women who end pregnancies with fatal birth defects, but completely fails to support us emotionally or financially if we continue the pregnancy, and have to give birth to a dead child or care for a terminally ill child for months after birth.

There are rare programs like the one profiled in the NY Times recently that provide palliative care for dying newborns. (I believe this is what Erzsa might've been referring to?) Unfortunately these are mostly in large urban centers, and unavailable to most of us.

That said, I'm glad you are choosing to do the NT scan and then CVS if necessary. My geneticist now recommends this simply because so many more issues can be detected on US with the high resolution machines. And so many women can make more informed decisions about the risk levels they face. As for the wait for amnio results, I assume that you will get it if needed at 15 weeks, and then get Fish test results again? So maybe you can breath a sigh of relief a lot sooner?

I'm going to go click over to Redbook later. Crossing my fingers till then.

[Genevieve]

Thinking of you today, and waiting for the ultrasound with the rest of your readers.

More funny poetry for Patrick: John Ciardi's children's poetry. (I specified, because he is also a "regular" poet.)

[littlea]

Just thinking of you and wishing you the best at today's ultrasound. I am so glad you have come to a decision on an approach you are comfortable with for this pregnancy...I remember naively saying years ago that I would never terminate a pregnancy, no matter what was wrong the fetus...when the 'worst' thing I could think of was Down's. Being married to a man with a bt, whose mom had many live children but also 5 1st trimester losses and 1 little boy who made it to birth and lived for only 2 days...well it's changed my views. I don't think I could carry the fetus that was 'incompatible with life' and I can't believe I think that way these days but sometimes the reality of life takes us off the moral high horses we were once so comfortable on. I would need to use every bit of information available to me and slowly build up the rationale for CVS or no CVS, amnio or no amnio. I think it's great to start with the least intrusive testing possible, see what that says, and then proceed to the next logical step that feels right to you. I pray those 2 little ones are just perfect.

Other than that, I think Patrick will have a great time at the Montessori camp and I'm glad you're canx the Y camp. Why stress yourself right now? You're not depriving him by not sending him to the Y camp - there are plenty of summers in his future - and he'll have a great time at the other camp. And you'll stay sane. Sounds perfect to me!

[littlea]

Just thinking of you and wishing you the best at today's ultrasound. I am so glad you have come to a decision on an approach you are comfortable with for this pregnancy...I remember naively saying years ago that I would never terminate a pregnancy, no matter what was wrong the fetus...when the 'worst' thing I could think of was Down's. Being married to a man with a bt, whose mom had many live children but also 5 1st trimester losses and 1 little boy who made it to birth and lived for only 2 days...well it's changed my views. I don't think I could carry the fetus that was 'incompatible with life' and I can't believe I think that way these days but sometimes the reality of life takes us off the moral high horses we were once so comfortable on. I would need to use every bit of information available to me and slowly build up the rationale for CVS or no CVS, amnio or no amnio. I think it's great to start with the least intrusive testing possible, see what that says, and then proceed to the next logical step that feels right to you. I pray those 2 little ones are just perfect.

Other than that, I think Patrick will have a great time at the Montessori camp and I'm glad you're canx the Y camp. Why stress yourself right now? You're not depriving him by not sending him to the Y camp - there are plenty of summers in his future - and he'll have a great time at the other camp. And you'll stay sane. Sounds perfect to me!

[kimberly/tippytoes]

Good call on the Y. The thing with the twins sounds just like a nightmare I had. Awful!

I'll be thinking about you tomorrow!

[Matthew M. F. Miller]

Here's hoping your 2 little ones ARE perfect. Can't wait to hear how it went.

[Deanna]

Well, with that kind of ringing endorsement of the Y camp even I wouldn't send him. I just wanted him to be free to have a little fun; I didn't want him to actually be imperiled! Eeek! Scary stuff there. When I worked at a church camp when I was in college we were always reminded that "this could be the summer someone dies!" Sounds like the counselors at the Y aren't getting the message!

[Reese]

Just saw REDBOOk - woot! I know the waiting sucks but I'm so glad that you had good news today.

[nate]

Love love love the redbook post. Yay!!! And Steve got to see, too!

So, when's his knee surgery scheduled?

[wealhtheow]

I've been refreshing your REDBOOK site so much I was starting to feel like a stalker. So happy to hear that NBHHY!! I really hope this works out in the best possible way, Julia. No one deserves it more than you do.

[Libby]

I just read the Redbook! I am so happy for you (and I'll confess to getting all teary eyed at the end)! All the best Julia!

[cursingmama]

REDBOOK isn't letting me sign in right now - I may be offensive ;)

I loved your latest posts - and the news sounds good. congratulations on getting to wait some more.

[Leggy]

Just read your REDBOOK post and I am so excited you've made it this far. NBHHY!!! I'm so hoping that your last PGD disaster was just a fluke and that this time, they got the PGD results right!

[Amy]

Just read REDBOOK.

YAYYYYYYYYYYYYYYYYYy!!!
EEEEEEEEEEEEEEEeeeeeeeeeee!!!

So happy for you!!