95, 99, 100!

Less than two weeks ago, we were told that our baby had a 1 in 20 chance of having Down Syndrome.   It also meant that we had a 95% chance of having a chromosomally normal baby.  A week ago, we were told that our chances of having a chromosomally normal baby went up to 99%.  Today, our chances went to:

100%.

The amnio results were normal.

Statistics have not been my friend these past four years.  So it was hard to take comfort in 95% or even 99% because we know what it is like to be in that 1%.  I can relax with 100%.

Go Fish

My cell phone rang yesterday afternoon as I was on my work line with Mr. X. I had just been talking with him about hard it was to wait for the FISH results from our amnio. Like a predictable novel, it was of course the MFM’s office.

This time, it was the nurse who gave us the results of the FISH analysis: Normal, blessedly normal.  She of course immediately harshed on my mellow by warning me that these were preliminary.  I did remember, however, from our conversation with the MFM at Monday’s amnio that FISH is pretty darn accurate and the false rate is very low.  I later found literature that put the false negative rate at 1%. 

We still wait for the final amnio results, but we are grateful for this encouraging news.

ps – yes, we did find out the gender. And, sorry, I’m not ready to divulge. I’m enjoying having that little secret amongst us and the parentals for now.

One Stop Shopping

Today found me once again on my back, slathered in jelly. Oh, how I wish I could say I was in some exotic jello wrestling contest, instead of at the staid, sterile offices of the maternal fetal medicine specialist.  At least with the jello wrestling, I would be able to have a definitive result in almost no time (most likely I would not be the victor).  Alas, I was slathered in jelly on a very uncomfortable bed at the staid, sterile offices of the MFM for our enhanced ultrasound. This was not the same MFM who made the call – this is the MFM that I like.

While we still don’t have a Final Answer, we do have some more information: no soft markers for Downs.  So, our chances have not gotten worse, but they also haven’t gotten better.  In fact, the baby was measuring ahead of schedule: 18 weeks on the nose, and I am 17w5d.

The thing is, this information is still not enough.  We need to no kidding KNOW one way or the other and the only way to do that in utero is amnio.  Initially, I would give an involuntary head shake of absolutely not when posed with the option of an amnio.  I had read too many horror stories about miscarriages due to amnios of otherwise normal healthy babies.  But, upon learning of our 1:20 ratio and the fact that even the most conservative estimates of miscarriage rates for amnio was 1:100, I knew that I was in a losing head shake battle.

Even though we focused on our vacation, I did devote some private time to thinking about amnio and realized that I would need to know now rather than later one way or the other and that I would not be able to live with a maybe.  So, after the ultrasound, I asked when they could do the amnio and was told, “right now!”

No time like the present, so ten minutes later I had my eyes squeezed shut while my abdomen was rubbed with iodine and I got the bee sting in the belly.   I’ve been through a shitload of procedures these past four years, but this was a first for me and boy was it uncomfortable.  The doc tried to make me feel better by explaining that they didn’t have to put the needle in very far, but frankly, it still hurt like a dickens.  Later Mr. X told me that he was surprised that I didn’t start swearing like a sailor.  I know enough to know that you do not under any circumstances make sudden moves or noises when a man has a needle in your stomach.  It was over pretty quickly and I was sent on my way home with strict orders not to lift anything – does that include fingers? – and to take it easy.  I have had no problem following doctors orders.

As for the results, we are doing FISH which should hopefully give us some answers relatively quickly, as well as the usual amnio culture which takes longer.  Just like the past week, though, we are taking it one day at a time.

Between Heaven and Hell

When we went for our nuchal translucency test a few weeks ago, the maternal fetal medicine specialist gave us several options for the blood test portion of the screening. We chose the sequential integrated test which would require blood work a few weeks after the initial scan to be able to get a more accurate result.  I went for that bloodwork on a Monday when I was 15w4d and was advised that we would have results by the end of that week.  The next day, we left for our long-planned vacation in the northeast.

Mira (on the wall)I wasn’t particularly concerned about the screening results.  The nuchal measurement was above the median, but still well below the 95th percentile and the initial bloodwork came back ‘normal’, although they didn’t give me a discussion of what normal meant.  I wasn’t going to press for it either since it was normal.

So, we enjoyed a few days in the Big Apple, seeing the sights, doing Broadway, and just being on vacation.  That Friday, we headed to the next portion of our trip – a cruise through New England.  We were giddy as newlyweds to get on the boat and enjoy the cruise.  First, of course, was the life boat drill that involved lovely dayglo orange life preservers and a demonstration of how to jump into the water if required.  We got back to our cabin and my cell phone was ringing.  It was the MFM with the results of our screening.  That’s where the nightmare began.

Our screening for Down Syndrome, aka Trisomy 21 was 1:20, meaning that there was a 5% chance of Downs, with all other results normal.  Unfortunately, it took several tries for me to understand what he was saying as the cell reception on a ship with tons of steel is not exactly ideal.  What was worse was that I had to go on the balcony to get any reception at all and so I was attempting to disguise the topic of conversation while also taking in what he was telling me.  Mr. X began to swear which frightened me more than what the doctor was telling me since he rarely ever swears out of anger.  He rarely gets angry period.

I was surprisingly calm as the doctor was doing his spiel.   I understood that it was not a final answer and I felt pretty certain that it would turn out just fine.  It was until he started throwing out the terms ‘terminate’ and ‘special needs’ that I began to really get worried.  It’s one thing to be told that you have a 5% chance that your unborn child has a chromosomal abnormality that could mean profound disability and quite another to be told that you can terminate the pregnancy you have worked for four years to bring to fruition or have a child who is labeled from birth as ‘special needs’.  In hindsight, I would have preferred him to simply leave it to what our options were for further testing rather than bringing up what to do in the event that the 5% chance came true.  That particular bell, however, could not be unrung.

So, there we are at the beginning of the cruise that we had been looking forward to as the ultimate escape and we are brought back to reality with one five minute phone call.  The first thing to do was to decide what further testing we wanted.  We both agreed at the time that we were not willing to undergo an amnio because the ultimate worst case scenario has always been having a perfectly normal baby that is miscarried due to a botched amnio.  The other options were an enhanced scan or do nothing.  We chose the enhanced scan which I called for and scheduled for a few days after our return.

Unfortunately, that was all that we could do at that point.  It was either stew or put it aside and go on with our cruise.  I am a stewer by nature and I was in fine stewing form after this.  Dinner was a blur as was conversation with our table mates. I could barely eat and wanted nothing more than to go back to our cabin and stare at a wall or Google.  I did neither, and had a terrible night’s sleep.  Everytime I fell asleep, I would wake up in terror at the thought of terminating if it came to that.

It wasn’t until the next night that matters came to a head and I was finally able to process all of the feelings that I had regarding the information we had not twenty-four hours earlier.  Mr. X and I were on our bed as we sailed away from our first port and I just started bawling.  I let it all out – my fears, my anxieties – and we talked it through.  We came to the conclusion that we needed to know and that there would be an end to this particular nightmare, even if it was not meant to be at that particular moment.  We talked about all of our options and what we would do if we had to make a decision.  Most of all, we talked about the 95% chance that everything was fine and that we would not let this ruin our vacation.  From that moment on, it did not.

We had a lovely trip and I was able to really enjoy myself.  For that, I am so proud and thankful and that is enough for me for now.

image: Mira (on the wall)

The Newest No-No

There are so many things you are told not to do in pregnancy. What not to eat, what not to drink, how not to exercise.  Nowhere, however, have I seen what I think is one of the most important no-no’s listed:

Do not Google While Pregnant. Ever.

This sounds like a perfectly obvious statement.  In fact, I have absolutely no trouble counseling others against the use of Google to research medical conditions.  Rationally, I know that it is just a recipe for unneeded worry and concern.  There is a direct correlation between the severity of the potential illness and the terrible stories and scary information Dr. Google spits up.  You can easily diagnose yourself with any number of exotic disorders within 15 minutes.

But, to be frank, I suck at taking my own advice.   So, when we scheduled our nuchal translucency test, I of course turned to Dr. Google for information.  I had no idea what the hell the test was and I wanted to be as prepared as possible for the actual test so that I knew what was going on.   In hindsight, I should have stuck with the nice, fluffy discussions on the non-technical pregnancy websites and left it at that. But, I was driven to find out As Much Information As Possible, including what happens when there is a bad result.  Forewarned is forearmed, right?

Normally, GWP would be considered ill-advised, but not necessarily off limits.  For me there is one little detail which makes  it truly dangerous: I have Obsessive Compulsive Disorder (“OCD”) which means that when I have an obsessive thought , I have to compulsively Google to find information that allows me to be reassured and thus get rid of the thought.  Of course, Dr. Google doesn’t always cooperate and provide me with non-technical, credible yet reassuring information, which then heightens my anxiety and the loop starts all over again.  Ultimately, the only thing that can quell my anxiety is to see the little bugger in a scan or get other reassuring test results.

Since the nuchal test is seeking to find out the chances of the fetus having some pretty significant chromosomal problems, I was fit to be tied by the time I had exhausted Dr. Google.  I had a lot of obsessive thoughts about the potential outcomes of the test and my compulsive Googling was getting me no reassuring answers.   What was worse was that I had to wait until 4:30pm on Thursday to find anything out.  Needless to say, Thursday was a long day.

We had to go a maternal fetal medicine specialist for the actual test since they had the more sensitive equipment than my OB.  What our OB’s office lacked in baby stuff, this office more than made up for.  Gliders in the waiting room, pictures of babies everywhere, large pregnant women everywhere.  It would have been total sensory overload for me anyway, but as an infertile, I had to fight to urge to apologize to the receptionist for being an impostor (“I’m actually infertile, I just happen to be passing through”) and avert my gaze from the giant bellies around me.  So, I was too busy taking in this new experience to dwell on why I was there.  We were called back and in no time, I was on the table getting warm gel slathered over my lower abdomen.

And, yes, there was little bugger.  Looking a lot less like a shrimp and more like a …. baby?  Mr. X and I both must have uttered the word ‘surreal’ multiple times.  Being the last ultrasound appointment for the day meant that the technician was looking forward to having a compliant fetus who would get into the position she wanted with minimal fuss.  Ours was not that fetus.  It was taking its sweet time, doing a little thumb sucking, doing a little wiggling, teasing her by almost getting into position and then saying, no, sorry, not comfy.  All the while, the tech is smacking her gum which is one of my greater pet peeves in this world.  So it was, tap, tap on the computer screen, smack, smack with the gum.  She finally got the little bugger in the position that she wanted and zoomed in for the measurements.  Mr. X and I were watching the gigantic flat screen tv that was projecting the images and getting mildly freaked out by how large everything (including the nuchal fold) seemed. One thing that didn’t freak us out was that the baby was still measuring on target with a heartbeat of 162.

She didn’t give us any information about the scan, but also didn’t appear to be overly concerned, especially if her gum smacking was a sign.  She wiped me down and headed out, while we were left waiting in the room for the doctor.  The doc came in and we had a rather long discussion about my previous history of miscarriage.  When I informed him that both of our miscarriages were monosomies, he looked at me as if I had just spoken in Russian.  He had never heard of anyone who actually had back-to-back monosomies.  What can I say? I’m a medical anomaly.  Finally, we got around to the measurements.  Based upon the baby’s age as dated by the scan (13w1d – which was right on target as I was 13w1d on Thursday), the nuchal fold measurement of 2.2 was above the median but still well within the normal range.  We were blessedly nicely below the Red Line of Doom.  Of course, that is not the whole picture, which we will only get with the results of the blood test, but it was enough to allow me to breathe.

Needless to say, I did my GWP thing when I got home.  But, it was all  of 30 seconds and I was nicely reassured.  I will need GWP rehab, I think.

This Must Be the Place

Not only is this the title to one my of all-time favorite ever songs, this should be my new mantra in getting used to the idea that I am now a patient in an obstetrics office.  Not an infertility doctor.  Not even the gyno.  A doctor for pregnant ladies.  Whoa, momma.

We had our first OB appointment today, and it went very well.  Our OB is just adorable and super nice (in fact, I think she might very well be known here as Dr. Sweet).  Dr. Salsa hooked me up.  She took our (sordid) history and I got the impression very quickly that she understood that we were not her typical patients and that she was more than up to the task of dealing with our unique challenges.  The practice itself seems like a pretty low-key.  There was just one other person in the waiting room when we arrived and during our whole visit, we weren’t hurried at all.  What was really amazing was that there was not a single poster showing a baby in the whole place. for which I am truly grateful.  Even now, those are a bit much for me.  I was weighed and then I had to give a urine sample – which for a moment I thought was so that they could confirm what we’ve known for the last 10 weeks – but was really so that they could look for proteins, etc.  Then it was essentially a well-woman visit complete with the breast exam! and pap smear!  But, she was super gentle and it was fine.

Then she whipped out the portable doppler.  I had been eying it ever since we got in the room with a mixture of curiosity and anxiety.  Then, I was slathered with gel and all we could hear was …. my heartbeat.  But, I did not allow myself to panic.  I got dressed and headed over to the sono room where I had my first belly ultrasound, with even more gel.  And, of course, there was the little bugger looking a little groggy but perking up once he knew he was on TV.  We even got a little wave.  Heartbeat was 167 and measurement was on target at 12w1d.

We are set up to schedule the nuchal translucency test next week.  This must be the place.

I Would Not Have Chosen Kenny G For This Moment

Ode to Joy, would have been more like it.  But, I’m getting ahead of myself.

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This morning was pretty quiet on the southern front – just some brown, as I had been having from the day before.  I got to my desk and called BossMan (since I work from home) and informed him that I was planning to have a relatively normal day work wise and that was it. Silly girl.

Mr. X came home from work around 11:45 and we headed out for lunch.  We noshed, talked memories – specifically when I moved in with him after we were engaged – and headed home.  He dropped me off, I got the mail and went inside.

And then, I went to the bathroom. 

So, there was blood. Again. I was not as surprised since Dr. Salsa had informed us yesterday that this bleeding could last some time.  Then, I felt something literally fall out of me and I heard a giant plop.  I looked down and it was a huge bloody mass (think round, globular, like an egg yolk except about 5 times as big).  I was pretty convinced that I had just passed my baby. 

I will not begin to try to describe the emotions that I felt.  Suffice it to say, I was numb and shocked and everything else all at once.  You would think having gone through this twice would have prepared me, but no such luck. 

I did at least have the presence of mind to run to the kitchen, get a baggie and a spoon and fish  out the ‘specimen’.  When I got to it to the freezer, I had the Sophie’s choice of where to put it – on the ice cream? on the Omaha steaks? If I had been in any other situation, I probably would have found this hysterical.  But, not this time.

I called Dr. Salsa’s office and told them what I thought had happened.  I then called Mr. X and had him turn right around from driving to work and come home.  Dr. Salsa called back and told us to meet him at the office at 2.  We had an hour to wait to see him.  I cried with Mr. X – I mean I bawled.  I sent an email to my parents.  I needed all the support I could get.  And, I cycled through all of the plans that would likely need to be made.

Finally, we left to see Dr. Salsa with our precious cargo in a little white styrofoam container.  We didn’t speak on the 10 minute drive over. We had already said what needed to be said. Thankfully, there were no patients at the office and we were able to get into the room immediately.  I placed the styrofoam container on the desk and got undressed.  And, we waited.  For some unknown and frankly unfathomable reason, they had Kenny G piping through the speakers.

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Dr. Salsa peeked at the specimen and said it actually looked like a clot. Funny, the thing was ginormous – easily the size of my fist – and I could have sworn I saw a little baby in it, but I thought I’ll let the man have his delusion. I know

In went the dildo cam and I mentally prepared myself to see a vacant uterus.  What I wasn’t prepared for was what we actually saw:

The Little Bugger.  Still there, still going strong, heart still beating.  OMFG, I bawled right there – do you know how uncomfortable it is to cry big heaving sobs with a wand up your snatch? I don’t recommend it. But, I was just so relieved that I just started crying.  Heart rate was 177, and we saw the unbilical cord complete with the blood flow looking like a giant highway with cars going back and forth on it.

Turns out what I passed was just a clot – in fact it was the clot that had started the original bleeding before.  This would explain the absolute lack of cramping and pain in the passing. 

And, once I had settled down and realized that all was, in fact, still well, I could not help but think that any music other than Kenny G would have been far more appropriate for this moment. This moment of the utter joy of relief.

We Came, We Saw, We Heard

I have a really bad habit when something big is about to happen. I think, “oh, in x number of hours, we’ll know” or “in another hour, it will all be over.”  Of course, this is only used for events that are anxiety inducing – they are not pleasant thoughts and only serve to cause more anxiety about the impending event.

This was what I was thinking as we drove the five minutes to the clinic in 6:50am cool air.  I’ve driven this route so many times now, seen the same people walking the same dogs, it’s amost comforting. Almost. Because today, was no ordinary day.

Today was the 8 week scan. The scan where the stakes were raised to threat level heartbeat.  Luckily, Dr. Salsa didn’t waste much time getting down to business.

And, poof, there was the little p.  I could tell right away that there was significant growth since our last scan two weeks ago.  And, with the movement of the wand just a milimeter, I saw the tell-tale flashing.  The tiniest heart amongst us.

You will probably shocked to hear this, but I never actually saw the heart flash before on either my two previous pregnancies.  Dr. Uterus’ scanning equipment was fine, but there was one monitor and it was rather hard to crane my neck to see the important stuff. Dr. Salsa of course, provides you with your own monitor on the ceiling which I am appreciating more and more each time. 

He turned on the sound and there it was – wocka, wocka, wocka – like Fozzie bear.  The rate measured at 167 bpm which is nice and solid. He took some measurements and everything was on track.

I also tallked with him about the big D.  He gave me the name of a psychiatrist who can, if need be, proscribe me something.  I also see my regular therapist on Monday and will definitely raise the issue with her as well.  Between the two, we’ll see what we can do.  The uncertainty level has gone down a little with today’s appointment.  But, it will come back up again.  We are in charted, but still dangerous waters and know that the boat can capsize still.  We’re just taking it day by day.

Thank you all for your lovely comments and support. May this karma rebound to you in droves!

The Sixth Symptom

I’ve been pretty fortunate so far in this go round with symptoms. And, frankly, I’m like Goldilocks when it comes to them – I don’t have too few or too many, but just the right amount at the right (read not incredibly uncomfortable) level.  I have the usual suspects – nausea, sore boobs, occasional back pain, tiredness, crankiness – all of which make feel better and worse at the same time. 

I have also developed another one that until today I did not realize I even had.  It is the most anachronistic one too, one that I had originally chalked up to that general personality change that I go through in the beginning of a pregnancy (think Jeckyll and Hyde).  What is this mysterious new visitor?

I’m almost embarrassed to type this because I know when I was not knocked up if I had read this I would have likely said something very unladylike at the screen. But, here goes:

Depression.

Yes, I am depressed – the version where you have no interest in anything that used to bring you joy or pleasure, the version with the extremely low attention span – huh? – the version that you really wonder why you get out of bed in the morning, the version that makes you question, will this ever get better?

I was incredulous at first.  Depressed, really? Not a toxic side effect of the hormone soup going on?  But, deep down, I knew that no, that was not the cause, although it damn well may have helped. 

I have given a lot of thought as to why I might be depressed.  On paper, this would appear to make no sense – I have finally gotten that thing I have been trying to get for a really long time and while there are no guarantees, there have been no statements of alarm yet. 

The problem is the no guarantees part, the part where I don’t feel as if I can plan past tomorrow because I don’t know if the little p will still be around.  And, I love to plan.  Along with the no guarantees comes the uncertainty. Will it work? If it doesn’t, when will we know that it won’t?  I was perversely fortunate last time to know pretty early on that viability was not looking good.  This time, Dr. Salsa has been nothing short of maddeningly cheerful making it that much harder for me to remain skeptical and preserve my fragile little heart.  I can’t let myself look forward and I can’t look back so all I am left to do is look at now and see the ocean of uncertainty that I just don’t know how this is going to end.  And that doesn’t help. 

Should we have progress tomorrow, I will talk with Dr. Salsa about this issue and will ask him about other options that are safe for me to take because I have finally figured out that this is not normal and I don’t have to live this way.

O-Bla-Di, O-Bla-Da, O-My-God

alfarmanI had my blood draw this morning for my third and final beta and all I can say is thank God.  I actually find it more stressful to go to the clinic now than I did when we were just cycling.  Part of that is because those people insist on throwing out the p word at me and saying, “I’m so happy!”  And, they see my pained expression and say, “Oh, I know, I know, but I am going to be happy.”  I also cringe because it’s a fairly open office and I hated it when I was a patient and would overhear such protestations of joy.  I can’t bear the thought of someone else having to deal with that, too, in the one place where they are supposed to be able to get away from it.

And, with this last blood draw I thought with a certain amount of satisfaction that it was going to be a good while before they would have me back for an ultrasound.  I mean, at least not until the end of July, which would give me lots of time to mentally prepare, right?

Wrong.

Next week.  They want to see if there is a gestational sac.  This is a new one for me. With Dr. Uterus, they practically bar the door until at least 6 weeks because there isn’t much to see.  But, they also didn’t do third blood draws, so maybe comparisons aren’t as helpful here. 

I have a week.  A week to calm my self down and find that mellow spot of meditation where I can still function.  Because I have to be able to function.  Hibernation, while attractive, is not an option.  And, I need to develop a method for coping with my anxiety because this may not be the end of the road and I don’t think my body can handle the up and down stress for a long period of time.  I also don’t want to drive everyone around me batshit crazy (except Mr. X.  I’m certain that he accepted this in our marriage vows).   Any suggestions for how to achieve a zen like calm in this kind of situation would be greatly appreciated.

I could have really used them this afternoon when I had to wait until 4 to get today’s results.  They were worht it, though: 15dp5dt beta = 846.  Doubling time of 44.4 hours, which while not as overachievingly spectacular as my previous 36 hours is still damn respectable.  Progesterone = 306, and yet, I still have to shoot myself in the ass.  Sing with me, “While my butt gently weeps…”

image: alfarman