Testing testing, 1, 2, 3...

I had blood work drawn four times this week.

I think that might be a record (during pregnancy itself, not IVF with its daily draws).

Join me for a week of pregnancy blood letting, if you will.

On Monday, I had blood drawn for a new test I had heard about from someone in the comments section.  It's called the MaterniT21 Plus test and is offered by Sequenom.  The test is not yet available in New York State, but somehow my hospital has a waiver, or gets a waiver for each patient, or something. It tests for Trisomy 21, 18, and 13. Now we should be in the clear for all of those, because this embryo (fetus?) had all chromosomes tested by microarray before we transferred back. But...I know there is a small error rate on the microarray....and we're very unlucky people. Since the test is noninvasive, we figured no reason not to get it, just to be sure. Our plan is to avoid amniocentesis and CVS, which are invasive and have a small risk of miscarriage, unless something super scary turns up in the next several weeks that seems to suggest one of those is necessary.

Let me pause to note how strange it feels to type "in the next several weeks," as though I'll still be pregnant then. I'm kind of living in both realities right now, the "imminent miscarriage" place, and the "things might just be all right" place. A little bizarre, but true.

Funny too that I would ever consider foregoing CVS and amnio. This is a big surprise to me and not what we thought we would choose. I'm generally a need-to-know person. But honestly we feel this pregnancy is so precious and delicate that we don't want to do anything that could even potentially damage it.

The MaterniT21 Plus test takes a couple of weeks to get results on. Ten business days, I think. I would be absolutely fine with having a down syndrome child, if I knew I could carry him/her to term. We're looking for a child who can live, not a perfect child. My fear is more another loss. Trisomies 13 and 18 aren't usually compatible with life (or with life past the first year). We might not continue a pregnancy with one of those disorders. But I know the chances of any of those being a problem are very slim. This is supposed to be a euploid embryo, and our clinic has a very good track record with their testing, but we just want to be thorough.

Tuesday, at 10 weeks 3 days, I had my progesterone and estrogen tested, which I was a little nervous about given the bleeding episode over the weekend. But the levels came back okayish with estrogen at 852, up from 833 last time (that's with two Vivelle patches) and progesterone down to 28.13 from the last result of 57 (that's with one endometrin suppository and only 1 /2 cc progesterone in ethyl oleate, instead of the previous 1cc). My nurse in Denver said to keep all meds the same and retest Friday. 

Thursday I went to the high risk OB area of my hospital and had my blood drawn for the nuchal translucency screening test. I knew they would be testing my beta HCG and another protein called PAPP-A (pregnancy associated plasma protein A). HCG is higher than average in trisomic pregnancies and PAPP-A is lower. 

It was a little saddening to fill out the nuchal screen blood work paperwork. Have you had a pregnancy with trisomy 21 previously? YES. Have you had other aneuploidies? YES. Monosomy X, Triploidy, Trisomy 16. I had to write down the side of the page because there wasn't enough room for all of the problems we've had. They also asked the savvy question of whether this was an IVF pregnancy and if so, what was the age of the egg at the time of retrieval. Nice. So we get to shave almost two years off of our odds. The egg was from a "young" 38 year old me, not my current "young" 40-year-old self.

I was shocked when the the nurse said the nuchal blood work would only require a finger stick (really? Why all these previous vials of blood to test my HCG then??). They pricked my finger, which proceeded to gush like a fountain, making it quite easy for the nurse to fill her row of paper blot circles with my blood. What can I say, I'm on lovenox. I'm a champion bleeder. We got the job done, and then some.

Which brings us to today....Friday....and another progesterone and estrogen check. Results coming later today. I will add them here when they come in. Hoping the progesterone hasn't dropped any lower. The estrogen seems to be hanging in strong, even rising a little bit, which makes me smile.

Thank goodness I work at a hospital. If I had to commute to get this done this many times, I would have an awful lot of explaining to do at work. As it is, I can duck out quickly and am not even missed. Job perks I didn't think of when hired.

Next ultrasound live baby check is Monday. And then...if the baby is still alive, the nuchal ultrasound is scheduled for Thursday. Feels like an important milestone. Not sure why. 

I sent my mom, who lives across the country, a framed ultrasound picture this week that should arrive tomorrow and knock her over with surprise. She doesn't know we even did the FET. We will be telling Will's sister in person on Easter morning. That's it for family telling for a while - we'll tell our other siblings, and my dad, later. These are all of the "most intimate" people. Our moms, his sister. We've always told them every time we're cycling, so keeping things mum this long has been very different. 

Wow. Really hard to believe time is still passing and that as far as I know, we are still pregnant. How lucky am I? Pretty damn lucky. Unbelievable, really.

Mo

  

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The three of us live to see another day

My RE fit us in this morning for a quick ultrasound. Told us to just find him in the back by the ultrasound area at 8:30AM. To not worry about an appointment. (It sounded so clandestine, but we were grateful.)

As of this morning, the spotting is still present but down to just a light brown. I figure whatever was bleeding still has to clear its way out of me, so the brown doesn't scare me so much.

When the RE saw us (huddled quietly in the back), he said he wouldn't be able to tell us anything except whether there's a heartbeat, because he doesn't deal with things this far along.

That's fine, we said. Heartbeat is all we care about at this moment.

So he did the scan.

Baby is big now!

And it has a heartbeat still (phew! I was trying not to totally freak out but was pretty nervous about that.)

Here - you take a look and see what you think...

Measuring a couple of days ahead, according to our RE. Heart rate today was 164 bpm.

So deep exhale over here on both Will's and my parts.

The three of us live to see another day.

Phew.

Seriously.

Looking forward to the "easy" part of this. The part where I'm just moseying along, relaxing, assuming everything will go well.

Maybe that isn't realistic.

But it sure would be nice.

Mo


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Maybe things were going too well?

Will and I went up to Connecticut with Moxie yesterday and took Ms. Mox out for a walk along the beach and then took Will's mom out for dinner.

We haven't told really anyone (except for you guys and our doctors) about this pregnancy and have been weighing when to tell our moms. Will decided yesterday, 10 weeks on the nose, was the day for us to tell his mom. She was very excited for us, a little cautious because of our terrible history, but excited. The first thing she said was that she might cry (and she is not an emotionally expressive person).  She agreed to keep the news to herself, for now, with the promise that we will tell Will's sister, whom he is close to, soon. The only hard part for me was when she asked me, "Is it yours?" She knows we considered using a donor. And I knew what she meant, and she is 75 years old, but gosh, however we get a baby, that baby will be mine, will be ours, 100%.

All in all, it felt good to tell her. But scary. Because what if something bad happens now? What if telling actually makes something bad happen?

After dinner, we stop by her condo, I go to the bathroom, and I am spotting. Red. Not a huge amount, but not nothing.

My uterus is unhappy too. Not cramping exactly, but irritated. Burning almost.

Cue panic on my part. A desperate need to get home. Right. Then.

Which Will obliged me on.

I've been staying close to my bed since then. Had a friend who is in town come over for a casual breakfast and chat because that was previously planned and not strenuous, but otherwise, I am supine. In bed. On self-imposed bed rest.

The spotting is brown now, which is better than pink/red, but still!

I am trying not to panic. Trying not to think that telling someone we were pregnant was enough to end the pregnancy. Trying not to be hypervigilant about symptoms. Am I less nauseated? Less tired? Less acute sense of smell? Whenever I notice my mind going in that direction, I stop myself. I don't need to monitor this. There is nothing I can do.

I pray the baby is still alive. We are trying to arrange an ultrasound check for tomorrow if possible. My OB is out on vacation all week making this a bit more complicated, but we are trying other avenues.

I will keep you posted. But I just wish things were a little more boring over here.

Mo

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All is ok!

Thanks for all of your well wishes and thoughts. Sorry to worry anyone with the lateness of this post.

What a day!

My OB was backed up 1.5 hours. We also had a patient emergency earlier today that necessitated police involvement (a very rare event), and then I had back-to-back sessions until just now, so this is the first I could post.

The OB's staff  was a little funny today. They were convinced I am 12 weeks pregnant because someone had input the wrong date in the computer. They didn't want me to have an ultrasound and were going to do a doppler instead. "We'll just take a listen." (I don't think so!!) They finally gave in and said I could have an abdominal ultrasound when I said absolutely no to the doppler, but they still seemed to think they were clearer on how far along I am than I am. Ummm, no, unless I've fallen through a wormhole, I am in my 9th week. I need an ultrasound. A transvaginal ultrasound, please. Which my OB concurred with immediately once she was finally on the scene.

So with the ultrasound we saw that...

Baby is alive!! Measuring 9 weeks 5 days, so one day ahead. You could see him/her waving arms and legs and twisting his/her whole torso, too. Wow! This embryo is really, really active. It was something to see.

My OB says all continues to look very, very good, and that our risk of miscarriage is down to 2%ish at this point.

Still trying to process this. All is well! Better than well! I am still shockingly pregnant!

Good news!! Continued good news!!! Whoever would have thought?

Mo

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FET #2: 8w5d weekly blood work results

So I heard from the IVF nurse at my local clinic...

blood work is back.

Estrogen is 1,169

which is great, especially because I dropped to 3 patches.

Progesterone is 57

which is just hands down awesome (weird that my breasts aren't hurting more, but I'll take it).

and

Beta HCG = 182,833

which is higher than last week's 140,932, but not much higher.

I'm going to try to assume that it's ok, though, and will ask the Denver nurse when I talk to her. I also have to find a way to get the local clinic to stop with the beta checks!! I did a little Internet research and it looks like the number starts to plateau around week 9 or 10... and I found this article on line, which helped reassure me that basically any HCG number is potentially ok at this point. Weird numbers are going to do a number on my fragile little mind...so stop checking the beta HCG, clinic!!!

Would you be worried about this beta number? Be honest. I'll add to the bottom of this post what the Denver nurse says once I talk to her...

Mo

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Update: Denver nurse never called so I'll try to catch her tomorrow...

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Waiting for the phone to ring

Hanging in...feeling mostly recovered from the IVIG, I think, and it's now only two more days until Will returns from his trip. Really looking forward to his return. In the meantime, all seems to be status quo. I'm having some occasional uterine twinges and momentary cramps, which I am guessing/hoping are growing/stretching pains. Same level of pink tinge...not really spotting, but spotting not completely absent either. My fatigue remains, but seems a bit better today. Appetite and sense of smell are off, but not intolerable. In fact, my appetite seems a little better, which of course has me a bit concerned, but I'm trying not to overanalyze.

I went in this morning for my weekly blood work check. It's amazing how anxious waiting for the results still makes me, even after doing this week after week. Again, the tech wouldn't let me drop the beta check. I told her I only need the progesterone and estrogen and she went and talked to a nurse and said they wanted to check the beta HCG again too. OK...I guess...Just hoping nothing comes back wonky and freaks me out. I'm down to 1cc PIO + 2 suppositories (from 3) and down from 4 estrogen patches to 3. Hoping those numbers are still good enough and that the beta is higher than last week (beyond that, I don't think there's anything to look at with the HCG anymore. And I wish they would stop checking it at my local clinic - Denver certainly doesn't want that lab value anymore - but my local clinic folks don't seem amenable to that).

So now it's the wait. Tick... Tock... Tick... Tock... I think it's silly this is still so nerve wracking for me. I'm pretty certain that the IVF nursing staff at my clinic would never guess how worried I am. After all, usually when someone is this far along, they've moved on into a blissful pregnant state. Or maybe not? Maybe that's just my imaginings of what "other people's" (read: non-miscarriers') experience is like. Sounds like many of you have had lots of fear too, so I suspect my imaginings are incorrect...

I will feel MUCH better getting the results, I think. Even though a rising beta and good estrogen and progesterone do not a live baby make (necessarily). I would have felt even better not checking on things at all. Weird, but true. I think by the time next Wednesday's ultrasound comes around, I'll be terrified to check but desperate for confirmation of the pregnancy or a desire to find out it's over. Thankfully, Will will be back by then, so I won't be on my own, whatever the news is.

I was scheduling patients today for next Wednesday, and as has happened every week, I paused before scheduling anyone for after the ultrasound. I know I'll be too much of a mess to see patients if I've just found out I've lost the baby. So I had the thought that maybe I should just keep my schedule clear....just in case. Ugh. Crazy thinking. I need to just keep living my life, I finally told myself. If the pregnancy is over, I will call patients and tell them there's been an emergency and cancel them. I don't need to predict the terrible outcome and plan for it. Seriously! Especially not every week. Not a good way to live one's life, waiting for and anticipating disaster at every turn.

Sigh.

So hoping the phone will ring soon with these results. And willing time to pass quickly so I can get a little further into the pregnancy. Just trying to be sane in the meantime. And succeeding...mostly...I think.

I will post the lab numbers when I get them. Should be any time now. Thanks for waiting with me.

Mo

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Laying low and welcome

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Welcome to those here from ICLW. To give you our story in a nutshell: my husband Will and I are health care folks (he's a physician and I'm a clinical psychologist, and we both work in academic medicine) and we have been at this TTC thing since 2007, when we married and began IVF a month after our honeymoon. I've done 7 fresh IVFs and 2 FETs, experienced lots of failed cycles and six miscarriages along the way, and I am currently 8-and-a-half-weeks pregnant after our second FET with a chromosomally normal blastocyst. We are pursuing immune treatments this time, including IVIG, lovenox, and prednisone, to see if it makes a difference. As our history has unfolded, we have considered surrogacy and donor egg, adoption, and embryo donation. We've also done most forms of testing known to man, and then some, and have traveled half way across the country to cycle. If determination could bring success, we would have succeeded already. But well, obviously it's more complicated than that. So...we are pregnant, or we were pregnant Monday when I last saw the baby on ultrasound. We still are very, very tentative about this pregnancy given our track record, and are taking things one day at a time.  Thanks for stopping by.

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I'm laying low today, working from home, recovering from yesterday's IVIG infusion. The treatment went ok last night, for the most part. The nurse could not for the life of her access a vein to get the IV started, so that was a major bummer. Apparently between cancer treatments and five years of infertility treatments, my veins are quite scarred. Ultimately she got it. Both she and I were very relieved. It was interesting to watch my temperature climb as the time passed - only about 1.5 degrees, but definitely noticeable. I progressed from chills to feeling hot by the end of the treatment. I guess that's part of what the benadryl and tylenol are for.

I feel ok today overall, just weakened. No headache so far, which is a very good thing. I thought I was feeling relatively ok, but then realized that I'm more out of it than I thought. I went to my local supermarket, Fairway, earlier today to get stocked up on provisions, set down my shopping basket to go check on something in another area, and then couldn't find the basket again for a good five minutes. It's like I'm developing early-onset dementia. Geesh. Walking back to my apartment, I realized that that 20-minute shopping trip had taken most of my energy. Later I have to go in to see one patient and I will also be going to a memorial service later this afternoon for a colleague who died unexpectedly a couple of weeks ago. But as much as I can today, I'm taking it easy.

I hate to say it, but although I saw the embryo waving its limbs around on Monday, it is impossible to imagine that I am still pregnant. I lost one pregnancy at 8 weeks, 4 days (so the equivalent of today), and one at 9 weeks 2 days...and I guess it just seems too easy to imagine that there is some imaginary "stop" button that gets activated for my pregnancies right around now. Not logical, I know. I also know that both of those losses were chromosomally abnormal pregnancies. And this one should be chromosomally normal after all the testing we put this embryo through. No spotting today so far, which is a good thing. Next Wednesday, which is when we are next scheduled to take a look by ultrasound, seems impossibly far away.

If only I could travel through time to get to a safer feeling part of this pregnancy. Of course "safer feeling part" may be a moving target, I imagine. I keep trying to remember that whatever the outcome, we've done everything possible to try to make this a success. And that's really all I can do. That and let the time pass.

Mo

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Immune testing and IVIG #3

Thank you for all of your encouragement and support. I really, REALLY, appreciate it. It was so reassuring to see the little embryo waving about yesterday. Seemed definitely there - maybe it's sinking in that I'm pregnant, finally. That only took 8 and a half weeks! I succeeded again with self-administering the PIO injection last night and Ms. Moxie has had her twice daily constitutionals (dog walker is taking her for the third one)...so I'm making it through the week as a pregnant solo dog parent so far.

I have been lightly spotting again since last night, damn it all...which has me feeling keyed up and anxious about things. It's light. More a pink/brown tinge than anything...but still. I wish it would stop, already! I try to tell myself it's no big deal, but it scares me, and I realize that's maybe sillly, because it is really very little. But I don't want to have any spotting or blood at all! None, I tell you!

In other not-so-exciting news, at 5pm today, a nurse is coming to my apartment to administer IVIG treatment #3.

Blech. Just thinking about it makes me nauseated and tired. I'm chugging water right now, as a matter of fact, because that supposedly helps prevent the pounding headache/migraine I had the first time I did it (although I drank gallons of water then too, so who knows...).

Like last treatment, I'll be doing this infusion in my home, reclining in my comfy bed, which hopefully will make it less onerous. And although I'm really not sure if it is helping or not, I would do anything to keep this pregnancy afloat.

I went back to the reproductive immunologist at the end of February and had some of the immune markers redrawn to see if they were improving with the IVIG/ prednisone/ lovenox triumvirate.

And things look decidedly better...but according to the doctor, not quite normal yet. Hence this third treatment.

Apparently, my natural killer cells are much better, but my %CD3, which is one part of the natural killer cell assay, is still elevated at 86.7 (upper limit of normal is 85...I'd say close enough...but he disagreed).

My TNF-alpha levels, which are part of the TH1:TH2 ratio reproductive immunologists love to look at is also slightly elevated at 31.6 (upper limit of normal is 30.6...again, I'd say normal enough, but he begs to differ).

So a third IVIG treatment it is. I am hoping it is the last. I hate the side effects, and I really hate the $3,000 price tag, especially since the research evidence doesn't compel me.

Here's hoping this does the trick and I am all done with these treatments after this. I'm feeling pregnant enough to feel like I'm definitely putting the two of us through this, this time. Sorry embryo! I hope this stuff doesn't make you feel as yucky as it makes me feel! And I'm hoping it helps you stick around for the long haul. Please.

Just to help motivate me (and hopefully not give me nightmares!!), here's a picture of a natural killer cell supposedly destroying an embryo. This is what we are trying to prevent. Hopefully it's working!! (or it's not even a real issue...either one is acceptable to me...).

Yo, NK cells! Get away from my embryo!!!

Mo

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Still alive

I went in before office hours to my new OB this morning.

She is so, so nice and saw me right away.

The embryo is still there, tiny heart beating away. Baby measuring on track, 8 weeks, 2 days. You could see little arm and leg buds this time. That's new since last Thursday. With the waving arm and leg buds, it is now a very cute blob, instead of just a blob.

In other news, I managed to inject myself successfully with the progesterone in oil and walk Ms. Moxie last night and again early this morning. All by myself. Feeling very advanced over here. I think the injection actually hurt less than when Will does it for me. Hmmm...

So in summary:

Phew!

For now.

We'll go back next Wednesday and see what's what.

That'll be a big hurdle. We've never made it that far before.

Praying all's quiet in the uterus until then.

Mo

Illustration Credit: jocelyn cheung

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