Divorce?

When I told my mom about our ultrasound, of course she was heartbroken for us.  Among many other things, she expressed the hope that this did not tear my husband and me apart. 

That seems like an odd thing to worry about, and yet there is a point when people go through so much, their marriage just cannot make it.  There are many stories of marriages failing in the face of significant illness or death.  My brother and his wife had a child, almost a decade ago, with significant disabilities.  (She’s okay now.  Let’s worry later about what the chances are that both of us would have children with severe and rare birth defects.)  The first year of her life, they were under so much stress just trying to keep her alive, their marriage almost did not survive.  (My parents dropped everything to help them and we believe that but-for that level of support, they would have divorced.)

Anyway, my mom, who has first-hand experience with this, repeatedly urged that we not let this tear us apart.

I brought up my mom’s comments with my husband the night of our ultrasound, and at first he sort of laughed it off, like that’s not going to happen to us.  But upon reflection, he amended his statement—probably not going to happen.

Why do people break up in the face of significant hardship and tragedy?  I’m sure there are lots of reasons: stress, handling it in different ways, not being able to take care of yourself and nurture your relationship, etc.  

I already feel it a little bit.  I’ve been through so much, I think I’m losing the ability to feel anything, let alone connect with and care for another person.  I’ve already written about how the physical intimacy in our relationship has plummeted.  But I think the emotional has too.  I feel like a robot, just going through the motions of living.  Wake up, eat breakfast, take medicine, go to work, eat lunch, work more, come home, engage with child, eat dinner, discuss household issues with husband, put kid to bed, read a few articles or watch a little tv, get shot, go to bed.  Repeat.  There is no joy, no passion, no meaning in this life.  It’s just punching the clock, waiting to grow old and die.  (Clearly I’m suffering from some kind of depression.  Add find a therapist to my list of things to do.)

How is that the environment for a happy life, let alone one that includes and nurtures another person?

I know the news is still early and we’re going back next week for more information, but my husband is taking this really hard.  He took the anencephaly diagnosis hard, of course, but I think he allowed himself to believe it was just an anomaly.  From the beginning of this pregnancy he’s been urging me to be optimistic, and I can see now that he was not just trying to cheer me up—he was making himself believe it too.  He was really shocked to get the news in the doctor’s office that there’s likely a serious problem with this pregnancy.  I’d been emotionally preparing myself for bad news, so of course now I can say “see, mom’s intuition!”  But he really, truly, had not given that possibility more than a cursory review and rejection.  He confessed that he thought it was stupid we even had a high-risk OB appointment, other than to confirm the baby did not have anencephaly.

I think he really needs my support, and I’m just not sure I have the capacity to provide it.  I can barely support myself.

So, are we going to get divorced?  I really hope not.  I love him.  He’s my best friend.  But I acknowledge that I/we are not in a great place right now.

If we lose this pregnancy, I think we can get back to a place where we can be happy again.  But if we give birth to a child with severe disabilities, I’m not sure we’re strong enough to make it.  Maybe if we had started from a really good place we could make it work, but we’re coming from such a low, bad place (the lowest, worst place I’ve ever been in), I just don’t know.  I don’t know.

Multiple fetal abnormalities

This feels like a nightmare.  From the moment the doctor answered my question, “do you have any concerns?” in the affirmative, I’ve felt like this is just a terrible dream and any minute I’m going to wake up.

Let me take a step back.  We had our 11w5d appointment with the high risk OB today.  I’ve continued to be very scared that something is going / will go wrong with this pregnancy.  (Every time we have an ultrasound—including today—I brace myself that there will be no heartbeat.)  Even though I’m starting to thicken up, I have not taken any “belly pics,” although I promised myself that if this appointment was normal I would take some at 12 weeks.  That won’t be happening.

We met with the genetic counselor before the ultrasound.  At one point I was like, “let’s just see a heartbeat before we worry about any of this.”  Fast forward to our ultrasound appointment with the ultrasound tech.  We saw a heartbeat!  And a round head!  And she was moving all over and measuring on target and had all her limbs!  Her nuchal cord measurement was normal!  And suddenly I started to believe—this is going to work!  We are actually going to have a daughter!  I was (finally) so excited and happy.

I should have known something was up when she told me to stay on the table with the jell on my belly “in case the doctor wants to take a look.”  And I should have been even more concerned when there was a REALLY long time between when the ultrasound tech left and the doctor came in.  But I was so happy—everything looked good!—that it never even occurred to me that the appointment was about to go downhill.

The doctor showed up and started asking us gentle questions about our loss history (get another sheet of paper).  Then he said he wanted to take a look at some things.  The way he said it shook me out of my happy haze.  I said, “do you have any concerns?” And he said yes right away.  

He started the ultrasound by looking at her abdomen and confirmed there was a problem.  He saw an omphalocele—a birth defect in which the contents of the abdomen push out of the abdominal cavity.  A “small” one occurs in 1/5000 pregnancies, where only the intestines are outside of the body.  A “large” one occurs in 1/10000 pregnancies.  They could include liver, intestines, and other organs.  (Interestingly, chromosomally normal fetuses are more likely to have “large” omphaloceles, and chromosomally abnormal fetuses are more likely to have “small” omphaloceles.)  We are so early he could not tell how bad it was, but it looked like her heart and bladder were not in the cavity, so that was good.  He said there was a (very very small) chance that it could resolve because we were still early in pregnancy, so he wanted to see us again next week to confirm. 

About 30% of babies with omphaloceles also have chromosomal issues, and those babies often have other serious issues, so their survival rate is about 1%, and if they do survive they have severe disabilities.  About 50% (or more?) of babies with omphaloceles have other birth defects, frequently heart defects (35%).  The overall survival rate of babies with omphaloceles is about 77%, and their chances are better the longer they gestate.  Babies born with larger omphaloceles have worse outcomes, and babies with other birth defects have worse outcomes.  (Babies born at 35+ weeks with an omphalocele but no other issues have a 97% survival rate.)  While an omphalocele may appear isolated during pregnancy, a substantial number of babies born with omphaloceles that appear isolated (26-40%) have other issues.  Up to 89% of babies with omphaloceles have other structural abnormalities, including cardiac defects (50%), gastrointestinal defects, clefts, neural tube defects, etc.

Then he spent a long time looking at other things, and pointed out that her spinal cord had not calcified yet.  (In other words, it looks like she is missing her spinal cord.)  He said he would expect to see a bony spinal cord at this point in development.  He was hesitant to give a firm diagnosis yet, because he said that they can’t diagnose this missing spinal cord it before 12 weeks, so he would want us to come back next week for a further check.  But he’s concerned that there is not the ossification of the fetal spine that one would expect at this point.  And he was not able to diagnose whether she had spina bifida (a neural tube defect) without being able to see a spine.

It turned out he was looking to see if the baby had OEIS (omphalocele-exstrophy-imperforate anus-spinal defects) complex—a very rare [like 1/400,000], but very, very bad cluster of defects.  He was hopeful she did not have it because although she appears to have omphalocele and spinal defects, her bladder appeared to be in the right place and not through the omphalocele.  So she does not appear to have bladder exstrophy.  (It’s too soon to tell if she has an imperforate anus.)

He also pointed out a bubble about the size of her little body sitting on her abdomen above the umbilical cord.  He said it was a cyst on the umbilical cord.  I was so out of sorts I did not even ask further questions about it.

Of course I was crying uncontrollably through the appointment, so it was hard for me to even formulate questions, and he was clearly very hesitant to give us a diagnosis at this point.  But he said that for the omphalocele, they can be mild to severe, and many can be corrected with surgery.  He was much, much more concerned with the lack of calcification.  He said that if she is missing a spinal cord, there could  be lots of reasons / syndromes that cause it, but no real hope that she would have any kind of a life.  The doctor said he could give us a list of potential causes for a spinal cord that had not ossified, but my husband asked him not to, as my husband thought I would just spend the next week reading about all of them and making myself miserable.

The doctor was very sensitive to how devastated we obviously were (and shared that he and his wife had recently had an abnormal nuchal cord result), but suggested that we just need to come back next week to get more information.  He also wanted us to meet with the genetic counselor again.

The meeting with the genetic counselor was a long one.  We discussed further chromosome testing because some babies with omphaloceles have them.  Obviously because we had PGS with our embryo, our chances are lower of having a chromosomal issue.  But that testing is not 100% perfect.  And it’s also possible that we have a non-chromosomal genetic issue, some of which can be tested for.  If we wanted to do further testing, we had the choice of doing a number of different blood tests, chorionic villus sampling (CVS) test, amniocentesis, or nothing.  

The different blood tests just test for chromosomal abnormalities (and targeted disorders? I’m a little unclear on this).  Because there’s a small chance of chromosomal abnormalities (PGS tested embryo), we decided to do more invasive testing that can give us information about chromosomes AND other things (discussed below).  So we skipped the blood tests.

A CVS can be done as early as 10 weeks.  The doctor will take a sample of the placenta either through your abdomen or vagina (depending on the position of the baby).  (They use a local anesthetic and a long needle.)  This test has about a 1/100 risk of miscarriage (we were told that an experienced doctor should have a lower complication rate, and that because our office is experienced it is probably more like 1/200 risk of miscarriage, and in fact none of the doctors at that practice have ever had complications), and if it is going to cause a complication it would be within days of the test.  It can diagnose chromosomal abnormalities with 99% accuracy.  It can also diagnose certain genetic conditions with similar accuracy, although it does not test for neural tube defects.  I’ve read it’s not recommended for women who have experienced vaginal bleeding during pregnancy.  (Hmmmm.)  Results can take 1-2 weeks.

We were offered, as an alternative, an amniocentesis, but that test cannot be done until 14 weeks.  (Although at our office it sounds like they do not like to do them before 15 weeks.)  It’s preferable to a CVS because the risk of complication is far lower—less than 1/200 (although we were told that at our office the risk might be closer to 1/1000).  Like a CVS, it tests for trisomy 21 (down syndrome), trisomy 13, trisomy 18, fragile X, and some other disorders.  It also tests for neural tube defects (by alpha-fetoprotein levels).  Results take 2 weeks.  

Originally my husband wanted to go with the amnio because of its lower risk of complications.  BUT because it looks like we have a potentially really severely fucked up baby, I thought more information earlier was worth the risk.  (If we did an amnio at 15 weeks, we would not have results until 17 weeks.  The idea of terminating another pregnancy that late… I just can’t.)  We decided to split the difference.  We’re going to do another ultrasound next Friday at 12w6d.  If things still look really bad, we’ll do the CVS.  If we suddenly have a spinal cord, we might hold off for the amnio.  (Although because we have a PGS tested embryo, and because only 12% of embryos with omphaloceles have something that can be diagnosed with either test—as discussed below—we might reconsider.)

So, here’s the question, what will the CVS/amnio really tell us?  Well, omphaloceles are “common” with trisomies 18, 13, and 21.  (3% of babies with omphaloceles have trisomy 13, 2% have trisomy 18, 1% trisomy 21.)  We might find out that we’re the 1/100 that had an inaccurate PGS result.  And knowing we have a fetus with trisomy 18, 13, or 21 would give us a lot of information about what we were looking at.  The test will also look for Beckwith-Wiedemann Syndrome, a 1/15,000 syndrome that has lots of other bad stuff.  (6% of babies with omphaloceles have Beckwith-Wiedemann Syndrome.)  That would also give us some more information about what we were looking at.  There’s also a really good chance that the tests will do nothing more than rule these things out.  (As shown above, more than 85% of babies with omphaloceles have none of those things.)

My head is spinning.  I need to sleep on this.  But I think there are pretty good odds this pregnancy is going to end.  I’m absolutely devastated. 

I'd hug you, but I'm not wearing any pants

I had my (hopefully!) last appointment with my fertility doctor yesterday. My 9w6d ultrasound was good. Baby was measuring on target and even moved! (Doc said that was a good developmental sign.) Gestational sac was good, yolk sac was still small but it grew! 3.4mm. There was no sign of the hematoma. And that head looks round! They still want me to take things easy, but I can start doing some gentle activity if I want. (I cross-examined the doc and ultrasound tech--do you see ANYTHING that concerns you. No.)

At the end of the appointment, my doc got a little emotional. He was like, we've been through a lot. (It's true, we have!) He made me promise to give them the update. He acknowledged that pregnancy is fraught with risks, but he's hopeful this one will work out. I sort of felt like everyone was giving me a salute as I walked out!

Of course, it turns out I'm going back next week. My blood levels are ok (estradiol 1,316, progesterone 30.0). I'm going to one estrogen pill a day, but staying on the shots until at least next week, when I have another blood draw. I think they want to see that progesterone level higher to show my placenta has taken over. 

So, how do I feel? Physically, I'm fine. I mean, I'm getting over the worst cold I ever had. (I was worried all the sneezing/coughing was going to make my hematoma worse.) But other than that--I'm fine. I don't feel pregnant. (No morning sickness, grr.) Emotionally, I'm going to be scared shitless the whole time. But I'm going to try to stay positive.

Next stop, high risk OB in 2 weeks!

Still growing

I had my 8w3d check-in last week.  Baby is still good—growing on target.  (20mm.*)  Although it’s early, her little head looks round.  (Fingers crossed.)  The gestational sac is also measuring well.  (29mm.)  That damn yolk sac continues to be a source of stress.  Only 2.7mm.  It should be growing at about 1mm a day and be at 4mm by now.  BUT at least it’s not shrinking!  So that’s good.  And it’s above that 2mm “danger zone” I wrote about the other day.  (I did not write down my measurements at the appointment, so I had to call back later and ask.  The nurse was like, “I know who you are.  If I give these to you, are you going to get on the internet and freak out?”  What, me, worry?)

The yolk sac starts to shrink rather quickly starting at around the end of the 10^th week, so let’s hope it can hold on until it’s no longer needed….  And that she can keep growing in the meantime!  I’ve read anecdotally that some women drink a lot of water in an attempt to increase the size of their yolk sac.  (No harm in trying, she thought, as she took a pee break for the third time that morning….)

Here are the stats from that article I discussed the other day for a woman at 8w3d (or 59 gestation days)http://www.fetalmedicine.com/synced/fmf/2010_27.pdf:

Gestation days	Crown to rump length, mm			Embryonic heart rate, bpm			Gestational sac diameter, mm			Yolk sac diameter, mm
	50th	5th	95th	50th	5th	95th	50th	5th	95th	50th	5th	95th
59	18.1	14.2	22.5	167	148	188	31.3	23.4	40.4	4.5	3.5	5.5

Right in the middle for crown to rump length and gestational sac diameter.  (Pregnancy—the one time it feels the best just to be average!)  Still struggling on that puny yolk sac.

The hematoma is still there but “drying out.”  It’s about 2cm x 2cm, so not too big.  There was also possibly another one, not connected to the first one, longer and thinner.  But they were not 100% sure.  As my placenta grows we do not want any hematomas getting any bigger, so I’m still on super reduced activity.  Work is okay but no exercise, sex, lifting things, doing chores or errands, etc.  Just sitting and walking super slowly and lightly.  (My doctor literally demonstrated how I should be walking.  “Like this,” he said, walking like he had a book on his head.)

During the ultrasound, the tech and doctor commented that my uterus is “very vascular.”  (That is, there are a lot of blood vessels in there.)  Note that the pregnant uterus is already very vascular, so it’s a little unnerving to be at the top of an already large heap.  Of course I was not surprised; they told me the same thing when I was pregnant with my son. 

I found out the other day that a good friend is also 8 weeks pregnant.  She also had bleeding at 5 weeks and went in for a transvaginal ultrasound.  She was freaking out that it might’ve harmed the pregnancy.  I was like, dude, I get one every week.  It better not be a problem!  (Then I started Googling risks from transvaginal ultrasounds….  I stopped pretty quickly because (a) it looks like the answer is no risk, and I know my clinic would hesitate to use them if there were, (b) how could it be any worse than sex?, and (c) not much I’m going to do about it now!)

A mother's intuition...

Is not always right.  I’d been feeling crappy for a couple of weeks—tired, a little queasy.  Then one day at 7w2d pregnant, all of that went away.  Knowing that sudden loss of symptoms can be a bad sign, I started freaking out.  (Although I’d had a bad feeling about the pregnancy from the beginning.)  At 7w3d I called and asked for an appointment.  By 4pm that afternoon, I started bleeding again—over a week after my last episode.  But this bleeding was different than the last two episodes.  It was heavier than spotting, but certainly not filling a pad (like the first time).  And it was more mucus-ey (TMI?).  So I was certain my pregnancy was done for.  I went home and cried my little eyes out.

At my appointment at 7w4d, I had completely convinced myself (and my husband and my doctor?) that this was the end.  Imagine my surprise when we saw a little embryo still growing, measuring on time with a little heartbeat.  (Although that damn yolk sac is still absolutely puny – still 2.5mm.  It should be 4mm by now.  My doc did not seem too worried—repeating what we heard last week that they worry more about big yolks than small ones.)

With respect to the bleed, they could not see anything.  So I don’t have a hematoma (pooling of blood).  When I do bleed (the cause being a mystery), it just falls out of me, hopefully leaving that little fetus totally undisturbed.  Nevertheless, they want me to rest, which means no exercise, heavy lifting, stairs, sex, etc.  In other words, Netflix and chill.

SO here we are.  This is certainly not a sure thing, but my doc says with a chromosomally normal embryo and a “normal” 7 week appointment, the miscarriage rate is like 5%.  My chances of failure are probably a bit higher because of my history and prior hematoma and teeny yolk sac, but they’re not terrible.

I’m just going to wait.  And try—really TRY—not to freak out over every little thing.*

*Still no morning sickness, but my boobs are now super sore.  Not that I’m worried about that one way or the other….

"Injecting" some levity

I feel like my posts have been really sad recently, so I want to post a few funny anecdotes.

First, I’m still doing the intermuscular progesterone shots.  Yes, the needles as big as toothpicks.  I think my husband hates giving me the shots more than I hate getting them.  Anyway, the other day my husband had just given me my shot and he was getting ready to put a Band-Aid on the spot.  The un-sheathed needle was sitting on our coffee table.  As he reached for the Band-Aid, he bumped the needle and it fell off of the table—and right into his leg!  I heard “aaaaaaah!” and then turned around to see the needle stuck through his pants and deep into his thigh.  I know it really hurt, but the look on his face (“oh, SHIT! That dirty needle sticking out of me really f-ing hurts!”) was priceless.  I could not stop laughing for like five minutes.  He  was pretty good natured about it.

Second, when we went to our heart beat appointment last week, we bumped into one of my husband’s good friends on his way out.  We had no idea he was seeing a fertility doctor, but he just got married and he and his wife are older, so no surprise.  Anyway, he was alone.  There’s only one thing a man is doing at a fertility doc’s office alone—leaving a sample (blood or… the other kind).  And he was coming from the part of the office where you only leave one kind of sample.  He was obviously pretty embarrassed.  We assured him—truthfully—that we bump into people there all the time.  My husband texted him after that he was sorry we interrupted his walk of shame.  ;)

Malaise

I’m pretty depressed right now.  I feel like shit—but not morning sickness.  Just like general yuckiness.  I can’t work out.  I can’t drink.  No sex.  I’m tired.  I have this overwhelming feeling of doom.  I hate the drugs and the uncertainty and the worry.  BLAH.

Okay, stay with me here, I’m going to lay out my feelings / grievances in a bit of a winding fashion….

After my anencephaly pregnancy, I was close to 150 lbs.  As my long-time readers may recall, I was ABSOLUTELY famished for the first 17 weeks of that pregnancy and gained around 15lbs—much more weight than I gained during that time period of my pregnancy with my son.  (I’ve wondered since then if my hunger / nausea was particularly strong because of the anencephaly.  I’ve never read anything suggesting as much, but I still wonder.)  And when I got pregnant that time, I was still carrying a little weight (about 5 lbs) from after my pregnancy with my son.  AND when I got pregnant with my son, I was about 5lbs heavier than my ideal weight (because I’d cut back on exercise—eggs hate sweat, or so I’ve been told).

Anyway, I raise all of this because after my anencephaly pregnancy I was 25lbs heavier than my ideal weight.  I certainly was not morbidly obese, but I was definitely at a weight that I did not need to stay at.  Unfortunately, the weight was almost IMPOSSIBLE to lose.  But, because I’m never going to use my eggs again, I was not particularly worried about sweat.  And after working out just about every day very hard for 8 months (I would always take 2 weeks off during my failed frozen embryo transfers) I lost ALL of the weight.  I was downright skinny—back to my college weight!!  Awesome, right?  

Yes, but I think that’s contributing to my current misery.  I got so used to the endorphins from a good workout that just sitting around is making me FREAKING MISERABLE.  M-I-S-E-R-A-B-L-E.  And sitting around being miserable, I just see the weight coming on again.  I know I shouldn’t worry about this, but I hate thinking I’m going to gain a ton of weight only to have this not work out.

My husband is encouraging me to ease back in to working out, for my mental health.  He points out that this week they could not find any evidence of the hematoma and that the doctor (not my regular) said I could do light exercise if I wanted to.  But I’m nervous.  I was bleeding just last weekend.  I don’t feel ready to work out yet.  If, at my follow-up appointment next week (at 8 weeks) there’s no heart beat or a super tiny yolk sac or the hematoma is back, I’ll never forgive myself if I start up with exercise (or sex) too early.  I know that seems sort of silly, but I’ve been through a lot.  I’m allowed to be a little crazy.

Speaking of crazy, I told my husband today I don’t even want a second kid.  That seems impossible to believe, considering all the shit I’ve chosen to put myself through over the past 2+ years, but I really meant it.  I mean, yes, if it had been easy I would have LOVED to have a second kid.  (My heart breaks a little bit whenever I walk into the nursery we set up for the anencephaly pregnancy.)  But I just really hate that the last two years of my life have been dominated with so much stress and sadness and uncertainty.  If I could go back in time, I would have had my son and then donated all of my pregnancy clothes to Goodwill and never looked back.

But, as my husband tells me all the time, hindsight is 20/20.  And at this point we have this pregnancy, which could theoretically be successful (although the feeling of malaise is strong), and I have one last transfer in me.  (As I told my husband, no embryo left behind.)

So I’m just going to try to suck it up as much as I can.  And maybe go for a short swim tomorrow.