Trisomymommy

Birth of Miss J

B stole my E. I was showing her some pictures on my computer and she reached out, grabbed the E key, and ripped it right off.  While I’m proud of her stunning fine motor skills, I do wish she had chosen the Q, or maybe F6.  I can still type by pressing on the metal plate where the key used to be, but it messes with my rhythm.

So, yeah, the birth.  For the record, here’s how it went:  For the last few appointments before that Monday (12/17), my doc had been offering to check my cervix.  I soon learned that by “check” she meant “rip it open manually.”  Although I almost kicked her in the teeth, I allowed this in hopes that it would help my body get ready for labor.  It did seem to be working and by Friday I was 3cm dilated.  Not bad for someone still 2 ½ weeks before her due date.  I was hoping labor might start naturally and that the pitocin would be unnecessary.  But then nothing happened over the weekend, so I showed up at my 6am appointment on Monday, ready to roll.

After I got settled in and hooked up to the monitors, my doc came in and declared me still just 3 cm. At 8:30, the pitocin began.  I had very mild contractions for several hours.  I knitted. T read the paper and annoyed me by eating his lunch (I was forbidden to eat).  It was dull.  By 12:30, I was having some stronger contractions and thought I must be making good progress, but the next check showed that I was barely up to 4 cm.  At some point after that, they broke my water and within an hour things started picking up.  By 2:30, the contractions were really strong.  I sat in a rocking chair for awhile and leaned over onto the side of the bed while T put counter pressure on my back. I breathed. I groaned.  It hurt.  By about 4pm, I was in serious pain and not feeling well equipped to handle it.  With B’s birth, I had been very prepared for natural childbirth and got through labor by walking and doing all sorts of moves I’d learned in my prenatal yoga class.  This time, I just felt weary and confined, being all tethered to the monitoring equipment and IV.  I started shaking, which had happened during transition with B, so I figured that I must be pretty far along, but then the next check showed that I was only 5 cm.  Realizing that this could be a very long day, I requested an epidural. 

When that epidural kicked in, I went from writhing in pain and dread to being totally relaxed and happy.  I actually felt more comfortable than I’d felt in months, and I was high from the relief.  A friend of mine compares epidurals to that moment in the Wizard of Oz when everything turns color, and now I know what she means.  I couldn’t stop staring at the monitors, which showed enormous contractions going by in waves while I felt nothing at all.  I felt totally disembodied, in the best possible way.  I even suggested to T that we might see if Monday night football was on, which probably made him wonder if I could get an epidural installed permanently.  So we sat there, watching the pre-game hype and joking around and calculating whether he had enough time to go out and get some beer (he did not). Aside:  Don’t you love how NFL announcers always say the most obvious things, but they say them with such drama that they sound profound?  Things like, “The only way for this team to win, is for them to move the football.  Down. The. Field.”  End of aside.  Meanwhile, my uterus did all of the work without any worry or supervision from me.  At some point, I felt a little bit of pressure down below, and sure enough, it was time to push. We turned off the TV (because we’re classy that way) and I pushed for, I don’t know, maybe 40 minutes, without feeling any pain at all.  And then there was a wriggling, screaming baby on my chest.  It was all so easy.

We’re now adjusting to life as a family of four.  It was very hard that B was sick that first week that I was home, but she’s better now and it makes a big difference.  Having recovered more or less from the birth, I’m now religiously following my two rules for post partum life:  1) Shower everyday, and 2) Leave the house everyday. At this stage, a successful day is one in which I’ve accomplished both of those goals.  Next week, I’ll take on some additional challenges, like writing a thank you note.

Let's just get this over with, shall we?

The worst thing about being in the hospital (except, of course, for having to deal with whatever problem put you there) is the forced passivity.  Rather than just get up and do stuff, you have to press the little button and try to communicate your needs to someone who is as intelligible as Charlie Brown’s mother.  A nurse is said to be on her way, but she may or may not come quickly and she may or may not be friendly.  Although your need for some ice water is surely the least important of all the patients’ needs, when nobody heeds your call, the need expands to fill your whole world and before long, you are feeling parched and irritable and semi-violent.  And what the hell does it take to get a decent latte around here?  And I can see that you hospital people have a wireless network, but you don’t like to share with the rest of us, do you?  Noooo… leave us to use dialup.

So yeah, my amniotic fluid levels had dropped very slightly on Tuesday and then dropped further on Friday, at which time they admitted me to the hospital for a fun weekend of IV fluids and bed rest.  I had been doing a modified bed rest at home before this, but I’m afraid I wasn’t very good at it.  If they had put me on strict bed rest, we would have brought in some help and maybe I could have complied, but this modified version left too much room for interpretation.  Lifting a toddler just this once surely won’t make a difference, will it?  Nah.  And while T has been terrific through all of this, when he is in the shower or out walking the dog, or transferring the laundry, it falls to me to lunge off of the couch to try to retrieve some random small object (Oh look, a screw! Where did that come from?) out of B’s mouth.   Anyway, I really did cut my activity way down, but I could have cut more and so I feel somewhat responsible for the predicament I’m now in.  But even if I’d tried harder to be immobile, it may not have been enough.  Even now, T brings B in to visit and plops her on the hospital bed with me to snuggle and I realize that even such cuddling is somewhat strenuous as I have to keep her from pulling out my IV, pressing the nurse call button, or diving off of the bed.  I miss her, but being with her requires more activity than I had realized, so maybe this little forced separation isn’t such a bad idea. But still, yesterday when they came to visit, B was grumpy (having refused her nap), and she didn’t seem happy to see me.  I feel like she’s becoming less attached to me and it makes me sad.  I won’t get a chance to repair that before the next one comes along.

This morning there will be another fluid check.  It is likely that the levels will be up, thanks to this weekend intervention.  If that happens, they’ll send me home on strict bed rest for about 8 more days, at which point I’ll hit 37 weeks and they’ll induce.  If the levels are not up, they’ll either keep me in the hospital or just get this baby born early.  Although I had wanted to keep her in longer and had hoped to do this as naturally as possible, I am now ready to get this whole thing over with and get on with being a mother to B and to the newbie. I’ll have this baby today if they’ll let me.

Birth plans...

I’m now on the weekly ultrasound-and-non-stress-test plan.  Last week’s appointment showed that the amniotic fluid had dropped back down a bit, so I spent Thanksgiving weekend lying on the couch and drinking as much as possible while my mother in law cooked.  Hopefully today’s scan will show that it has gone back up.  If the levels continue to hover below normal, they are proposing to induce me at 38 weeks or so (three weeks from today, yikes).  I guess the logic is that once you reach full term, there is no point in keeping the kid in a suboptimal uterine environment.

I am ambivalent about the degree of monitoring I’m getting and the proposed induction.  On the one hand, if anything starts going screwy with my body or with this baby, I want to find out as soon as possible and I want the best possible care.  If it’s better on the outside than on the inside, then I’m all for getting this girl out, stat.  I understand all of the criticisms of the medical establishment for practicing defensive medicine and doing excessive intervention, but I believe that for the most part, our interests align: we all want a healthy baby.  I want it for personal reasons, they want to avoid a lawsuit, but in the end we want the same thing.  It is, after all, a high risk pregnancy, what with the low fluid levels, my sticky blood, the Lovenox I shoot up every day to thin out the sticky blood, and my (gulp) advanced maternal age.  So maybe they are right to watch me so closely and try to wrap things up as quickly as possible. 

In addition, I kind of like the medical care.  Nothing makes me more emotionally vulnerable than pregnancy, and I think my reproductive history exacerbates the problem.  It is very hard to relax and have faith that everything will be fine.  Everyday I imagine something going terribly wrong.  It doesn’t help that of the last four friends who have given birth, three have struggled with serious birth defects or life threatening birth complications.  And it doesn’t help that the last time I gave birth I was glowing with elation only to have my world fall apart as some pediatrician started talking about extra space between toes and a single crease on a palm and did you have an amnio?  Although I feel more or less at peace with B’s diagnosis now, nothing can ever undo the trauma of that moment, and I find myself reliving it now.  This time around I do know that the baby has the usual number of chromosomes, but it’s all too easy to imagine having some variation on that same conversation.  (I will be absolutely terrified to hand this baby over to a pediatrician to examine.)  So given this emotional state, the weekly tests are mildly reassuring and the idea of a medically induced and closely monitored birth doesn’t seem so bad.

 

And yet, I can’t help but wonder if this is all rather excessive.  My fluid levels are not that low, just lower than normal. The girl is growing perfectly, she kicks a lot, and shows no signs of being stressed.  The blood clotting issue is being treated and so is unlikely to pose any problems.  I don’t want anyone trying to force this girl out before she’s ready, and I don’t want to end up having a c-section because of a failed induction that wasn’t even medically necessary.  I would like to do this naturally, despite the irony of having conceived this embryo in a Petri dish and then storing it in a freezer for two years before having it transferred to my medicinally prepared womb.

And besides, if I go for the induction, I’ll have to choose the date, and I just don’t want to deal with the astrological implications.

Drinking 2

This drinking thing works.  My amniotic fluid is now at normal levels.  Excuse me, I have to go pee.

Okay, I'm back.  Sometimes as I reach for yet another glass of gatorade, I hear Elliott Smith's voice in my head singing Between the Bars ("Drink up baby, stay up all night...")  Like most of his songs, this one is dark and depressing and has nothing to do with trying to stay properly hydrated for the sake of your amniotic fluid, so it really isn't appropriate for my situation.  Come to think of it, he has another song with a great melody and a chorus that starts, "High on amphetamines..."  and sometimes I find myself singing that one out loud, despite it's personal irrelevance.  I'm no addict, I just like the music.

 

Drinking

I failed to post everyday in October.  To my credit, I knew that I would not manage to post everyday and set for myself the much more manageable goal of posting more often than before.  (Yet more evidence that I am very wise -- I know that the secret to happiness is low expectations.)  I did achieve that, so yay for me.

Although I did manage a whopping seven posts last month, I did not write anything especially thoughtful about Down syndrome.  The truth is, I haven't been thinking about it all that much.  Of course I think about Miss B all the time, but her diagnosis is more in the background for me these days.  It's the specifics of this one little girl that hold my attention, and to follow up on some of last month's posts, here are some of those specifics:  She is sleeping perfectly again.  Immunoglobulin test results came back normal, although she continues to struggle with sinus and respiratory issues and our ENT now wants to remove her adenoids.  (Your opinions on this surgery are welcome.  I'm not sure what to think.) For about 15 minutes on Halloween she wore a cow costume and we all delighted in sitting around saying "moo" until she became too irritated by the ill fitting hood. 

I turned 37, further advancing into the obstetrical "advanced maternal age" category.  The pregnancy just hit 32 weeks and has been going along well, although we had a bit of a scare last Friday.  At about 2:15 pm, I started having mild contractions.  I realized that I'd had some coffee in the morning but no water all day, so I figured I might just be dehydrated.  I started drinking water as fast as I could. Two hours later, I was peeing every 20 minutes but the contractions were still coming, so I called my OB, who told me to go home, lie down, drink more water and call back in an hour if it didn't get better.  So I did all of that, and it didn't get better. The contractions were not strong enough to be labor contractions, but they came exactly six minutes apart for four hours and I could feel pressure on my cervix with each one.  The doctor told me to come in to labor and delivery, which required us to scramble to find a friend who could take Miss B for the evening (we have no family nearby).  The contractions eased up as soon as I got there, but the doctor there kept me for about many hours and did lots of monitoring and the fetal fibronectin test, which came back negative, and then sent me home telling me to remember to drink enough water.  Duh.  I am a fool.  I was absorbed in work stuff and I forgot to drink. 

Of course I was careful to drink more water this week, but yesterday when I went in for my regular appointment they decided to do an ultrasound to check amniotic fluid and the level turned out to be lower than normal.  I've been instructed to take it very easy and drink a ton of water and get checked again in a few days. 

There's this thing that seems to happen to me during pregnancy -- I just lose all creative motivation.  I've had a hard time blogging, commenting, or even responding to emails.  It's not that I'm depressed, I'm just kind of turning inward and less engaged with the outside world.  Obviously this is an emotionally complex time and there is much to write about, but I don't seem to have the words for it right now.

14

I'm starting to think that this pregnancy thing might actually work out as I had hoped.  I did the first trimester screening and there were no red flags raised.  Today I hit 14 weeks and it seems that I no longer anxiously check for signs of impending miscarriage with every bathroom trip (of which there are very, very many).  I am sleeping a little better.  I am also sporting a bit of a bump, but it's nothing I can't camouflage with baggy clothes for the time being.  I still haven't announced it to my colleagues or most of my friends, although I'm sure some suspect.  It's kind of pathetic when you end up in a restaurant with some old school friends (that would be old friends back from my school days, not necessarily friends who are old-school, and what would that mean anyway?) and they are shocked when you order mineral water instead of wine.  Sigh. I miss wine.

My husband doesn't know that I'm pregnant.  I bring up the subject at least once a day, and he has seen three ultrasounds, and he appreciates some of the resultant bodily changes, but at times I'm stunned at his cluelessness.  When talking about some future plan, such as whether we will move anytime soon, whether we will do renovations on the house, or what we will do on vacation, he routinely forgets to factor in that there may be a newly born little person around, one who needs, like, care and stuff.  We decided that we were ready to tell our parents, so I called mine right away and announced the good news, but T still hasn't told his mom, because even when she calls, he forgets.  He also manages to concentrate on his work even when there is important worrying to be done. 

PGD

Mauzy asked why we didn’t do pre-implantation genetic diagnosis.  The question stings a bit because, right now, I’m kind of wishing that we had.  We asked about it this time around.  Our clinic only just started offering PGD and I think I would have been their first patient to take them up on it.  They don’t actually do the test themselves.  They defrost the embryos, take a cell out of each one, and then overnight the cells to some lab in Chicago where they undergo the FISH test.  The results are sent back just in time for the transfer. 

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PGD is fairly new in general, and very new to my clinic, and I just didn’t feel confident in it.  The error rate is around 5-10%, due partly to the nature of the test and partly to the possibility of mosaicism in the embryos.  I found it difficult to get good information about the risk to the embryos of having a cell removed, but clearly it depends on the experience of the person removing the cell.  What if we ended up destroying several embryos in the process?  Even if the cell removal didn’t hurt the embryos, the clinic proposed defrosting all of my embryos, doing the PGD, transferring two normal ones and then refreezing any additional ones that were normal.  It’s not clear if those would survive such an ordeal, so we’d probably lose some due to the refreezing if not the PGD.  Finally, I was a bit freaked by the logistics.  There is room for error at every stage – from the initial removal of the cell, to the Fedex people or whoever transports them, to the kindly folks working Ohare International Airport (who usually get my bags to the right place, although not always on time), to the lab doing the FISH test.  And then there’s the record keeping and communication, and I know from my own experience that the chance of an error there goes up with every additional person involved.  What if they lose track of which cells came from which embryos?  Anyway, I figured we should just let everybody practice this for a few years before we trust them with our embryos.  Maybe this was dumb of me.  People do medical procedures all the time without worrying too much about such errors.  Maybe it’s better to not know anything about the logistics involved. 

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It didn’t help that for years I have followed the Julia’s blog, which has now spawned another blog here.  Due to a balanced translocation, she has had 11 miscarriages.  She did a PGD cycle not too long ago and they screwed it up – that miscarriage tested positive for the chromosomal arrangement they had used the PGD to avoid.  I know that in making decisions, we should reason from large numbers of cases and not be swayed by a single case no matter how vivid, but come on, you try it.  (Recently Julia gave the PGD guys another chance and is now carrying twins which may actually be healthy.  Good luck, Julia!)

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So… here I am.  When I started this process back in March, I knew that this stage would be difficult, but somehow I reasoned that I would be able to compartmentalize enough to function.  I also reasoned that since it was most likely that everything would be fine, it would be worth it.  I was wrong about the first point, but I suppose the second one still holds.

Vanish

I still seem to be pregnant.  At six weeks, I went for an ultrasound with the RE and learned that both of the transferred embryos had stuck and developed little heartbeats, although one was beating kind of slowly and measuring a bit small.  We spent two weeks trying to fathom how we could handle twins.  At eight weeks, I went for an ultrasound with my big ObGyn practice.  The US tech started describing "the baby".  Singular.  She didn't realize that we had seen the twins earlier and I guess she was planning to tell us about the second sac later on.  Based on the measurements, the little one must have petered out right after we saw it.  They call this a "vanishing twin," which sounds weirdly magical for a medical term.  It didn't vanish, it died.

How weird to have lost a baby and yet still be pregnant.  You can't even drown your sorrows in red wine and high-end chocolates, which is my usual reaction to miscarriage.  I cried a bit during the ultrasound, but have been okay since then.  Actually, I feel somewhat relieved.  I was very anxious about how well my body could gestate them, and then feed them, and about how much of my attention they would have to take away from Miss B.  I had suspected that the littler one might not make it and had dreaded the thought of going on for many weeks with that uncertainty.  Luckily the loss happened early enough that it should have no impact on the one who stuck around. 

When I got to the ObGyn's office for my appointment, I signed in and was given some paperwork to fill out.  The very first form was a prenatal testing questionnaire, which started off asking if I was over 35 (yes, 36, but this baby was conceived when I was a sprightly 34 -- there's never room to explain that on the form.) and if I had ever had a child with Down syndrome.   I know that many people in the DS community have very negative reactions to prenatal testing,  but my reaction is mixed.  Even though I didn't choose invasive testing last time, I appreciated having the option.  After the screening results (1/200), I was on the fence about whether or not to do an amnio and I never felt pressured into it.  I also never felt that my doctors had overly negative stances toward DS and I know that they are supportive of women who don't terminate after getting the diagnosis.  In short, they usually handle this stuff well.  But I was floored by this form, by being asked about DS even before I was asked about prenatal vitamins.  It gave the impression that catching the DS cases was the whole point of prenatal care.

This is a tough time for me.  After two miscarriages, 3 years of infertility, a baby with genetic anomaly, and now this loss, I have little faith that everything will go swimmingly.  I'm not sleeping well and that makes it harder to cope with the anxiety and exhaustion.  I guess it works out sometimes, at least for some people.   Even if it ends in heartbreak, it's worth at least this one try.