ChezPerky

So here’s a hypthetical for you: Suppose you told a healthy, non-pregnant woman (or man for that matter) that she may not get out of bed for four months with the exception of trips to the bathroom and doctor’s appointments. Would she think of that four months as being a mini spa vacation? I think not. And would her friends say “oh how relaxing this must be!”? Unlikely. Now, take a pregnant woman and tell her to lay in bed for four months, and only to get up to use the bathroom and go to doctor’s appointments. Try adding in constant, painful contractions, frequent vomiting, and pervasive nausea. And what do her friends say to her? “Oh how relaxing that must be!” or “Enjoy it while you can!” or “it must be so nice not to have to go to work/class/the preschool fundraiser/whatever.” I’m really not joking.

So I received an email from a friend that went something like this: “As you know, enjoy the bed rest since once the baby arrives – it will be a long time before you’ll be able to ‘just lay around!'”

Honestly, it took me a good long time to respond to that email.  I know, with absolute certainty, that the email was intended to be supportive.  I know, with absolute certainty, that the author expected the email to be a comfort.  I also know, with absolute certainty, that the author simply had nothing better to say.

So let me dispel some myths for any of you who have never been on doctor-imposed bed rest.  First, let’s not lose sight of the fact that I have four children who all have very specific needs.  They are not, at this point anyway, low maintenance children.  Bed rest or not, there’s very little “just laying around” that happens in my house.  Even if I’m not up and chasing them (not to say I haven’t done my fair share of that), I’m inundated with other things that I have to do.  I have to ensure I’ve got coverage for them, coverage for Julian, coverage for getting the house together for Pesach, etc.  I have to do contraction monitoring a minimum of twice per day (for an hour each), and often upwards of 4-5 hours per day.    I have to make sure I’m getting my IV fluids and medications on schedule.  I have to spend countless hours on the phone with insurance companies because coverage that should be straightforward isn’t (and I doubt the latest healthcare reform bill will help that a bit) and I still have to go to the doctor twice a week.   Never mind that we’re in crunch time to figure out Julian’s school status for next year, etc.  

And none of that is accounting for the fact that I feel like hell.  I haven’t kept down a substantive amount of food or fluids since September.  I’m constantly nauseated and often throwing up, whether I’ve eaten or not.  I have reflux so badly that I’m literally waking up choking on stomach acid some nights.  I have gestational diabetes and insulin shots to deal with to help regulate that (plus 4-5 times per day of  checking my blood sugar) – and frankly, my screwed up blood sugars leave me feeling even crappier than before.  I have constant headaches since I can’t take my preventive medications.  And I’m flat out exhausted (it’s hard work growing a whole human).  Mostly?  I feel like hell.    This is hardly a time to “enjoy” myself.  Bed rest is not “restful” and it’s not pleasant.  It sucks.

Oh and then there’s the emotional side of all of this.  Let’s not forget that the whole reason I’m ON bed rest is for preterm labor – so staying on bed rest is, in theory, to help me keep this baby in.  There’s a tremendous guilt-factor if I don’t manage to keep this baby in through some failure to comply with bed rest.  Yes, I say I want this kid out NOW – but we all know that I’m fully aware of the need to keep this baby cooking for another month or two.    The last thing I want is a month-long NICU stay for this baby.  Especially since I’m not delivering at the hospital five minutes from my house, but instead delivering at the one that’s 20-40 minutes away (longer during rush hour, of course).  

Finally – it’s not like it’s possible to store up on rest and sleep.  Sleeping 12 hours a day now won’t make it any easier to get through the sleepless nights that are the hallmark of life with a newborn.  Of course, at least this time, it’s ONE newborn, not three, but it’s still going to be a while before we’re sleeping through the night once this baby comes home, and no amount of sleep now will make that easier later.

I did get myself into this mess.  And I did ask for this (well, I asked for a viable pregnancy, not a complicated viable pregnancy).  But that doesn’t make this any more fun.   No one coul have predicted the rollercoaster that this pregnancy has been for our family, that’s for sure.  I am grateful to be pregnant.  I will be grateful to meet this child (preferably not for another couple months).  But that doesn’t mean I have to enjoy the pregnancy itself.

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I probably should have posted this earlier, but I’ve really been too out of it to write a coherent post.  So better late than never.

If you’re my friend on Facebook, you probably know that I was admitted to the hospital Saturday night.  If you’re not my friend on Facebook – why not??  Anyway, all day Saturday I was having contractions that the terbutaline wasn’t stopping, even with multiple boluses.  More alarmingly, there was a signifcant decrease in baby movement.  I felt 5 or 6 kicks in 2 1/2 hours.  I wasn’t freaked out about that – because as far as I’m concerned, if the baby was moving at all, that was a sign that the baby was still hanging out, even if the medical establishment would have preferred more movement than that (and no, I’m not late enough in the pregnancy that they start saying “well the baby doesn’t have much room to move anymore”).

Anywhozit, I came in and was contracting a lot (shocking).  An extra terbutaline bolus didn’t help.  So the doctor admitted me so he could put me on magnesium sulfate.  A “magnesium holiday” as they call it (whoever “they” is).  In theory what happened was that my body wasn’t responding well enough to the terbutaline anymore, so they pulled it and ran the magnesium instead (called a “mag holiday” or a “mag wash” … another friend said that’s a terrible name for it and it ought to be “antepartum purgatory” which I think comes a lot closer to the truth).  When I was admitted, I was banging out contractions every 2-3 minutes (that’s about 20 an hour, if you’re keeping count).  The mag cut me down to about 10/hour pretty quickly and then finally I had a couple hours yesterday afternoon where I only had a handful and I was able to sleep (blessed sleep!). 

The doctor came in mid-morning yesterday to talk to me and I was, at that point, not too loopy from the magnesium.  I was still pretty uncomfortable, but the contractions had slowed to about every 6-8 minutes, so it was looking good.  Still, I admit I’m completely miserable, and as horrific as it makes me feel to say it – I just want it over.  Of course I want this baby to cook as long as possible, but I also want my body back.  The nurses had called my doctor probably close to a dozen times between the time I was admitted and the time he came to see me mid-morning, including flurry of 3am phone calls to him to clarify orders, etc.  He walked in and I told him I had a deal for him.

Him:  “Oh, you’ve got a deal for ME?  Can’t wait to hear this one!”
Me:  “I won’t have you called at 3am anymore if you get this baby out NOW.”
Him:  “Oh, I don’t mind 3am phone calls.  My wife might have gotten a little annoyed, but it doesn’t bother me.”
Me:  “No, really, think about it!  A whole night’s sleep and all you have to do is GET THIS BABY OUT.  My offer is good for 24 hours – then no promises about quelling the 3am phone calls.”
Him:  “That’s okay.  I’m not on call after tomorrow morning.  I can take it.”
Me:  “Yes, but Dr. H is on call tomorrow – she’s way nicer than you!”
Him: “Yes she is.  You can take your chances with her.”

[for the record, Dr. H wouldn’t deliver me today either… oh well!  And yes, I was kidding.  Mostly.  Well, at least a little bit.]

He asked how I was feeling and I said “Have you ever been on mag?”  He admitted he had not but had talked to plenty of women who had been on it.  He told me I was taking it rather well.  He told me that usually they can get people off the mag within 48 hours.  “48 hours!!???”   “What?  You want me to turn it up?”  Oh hell no.  He did warn that if the contractions got any worse, they’d probably have to turn it up, but he was hopeful that they wouldn’t have to do so.

And that’s what I was hoping for.  Until suddenly I was banging them out every 2 minutes again.  I was in agony.  And unfortunately, that bought me a ticket to purgatory – a 50% increase in my mag dose.  If you’ve never experienced any of the joys of magnesium sulfate, there’s really no describing it, but I’ll do my best.

It starts out feeling as though you are literally on FIRE from the inside out.  Every vital sign check taunted me with ridiculous pronouncements that my body temperature was 98.4 (F) couldn’t possibly have been that low when I was certain I was 4,000 degrees (F).  Then the nausea/vomiting, which fortunately wasn’t a huge problem for me since I am already on high doses of Zofran and Phenergan – so I wasn’t puking uncontrollably like many women do… I just wished I was because I felt so terrible.  The headaches.  The blurry vision.  Seeing thigns in triplicate (I’m not joking!).  And the absolute worst part of all – muscle weakness.  Muscle weakness sounds so benign, doesn’t it?  But my legs were lead weights – I couldn’t move them if I tried.  I coudln’t sit up, couldn’t move my head, could barely lift my hands.  Those who have known me for a while know that the sole reason I’m opposed to ever having another spinal/epidural anesthesia is because I had a small stroke (TIA) when I was 23 – losing control of my body on purpose is not ever going to be a goal of mine.  It’s petrifying.  I got congested, and completely parched – my throat was killing me from being so dry, but drinking a gallon of water (which seemed the only logical solution at the time) was not an option, since between the mag and the preexisting hyperemesis, I would have just thrown it right back up.   There really is no way to describe the horrors of mag and do it justice. 

Thankfully, I have weaned back down, and am now below my starting dose.  The hope is that I’ll be able to turn the mag off entirely tonight (long shot) or tomorrow, and go back to the terb pump.  Hopefully this “holiday” will have helped my body downregulate?  Upregulate?  I can’t keep it all straight. But one way or another, hopefully after this holiday the terbutaline will be working again.  I’m not holding my breath, but I *am* hopeful that I’ll get to go home in the next day or three and that I’ll be home for Pesach. 

My poor husband is stretched to the limit and I don’t blame him.  I know very clearly now that even if I ever thought I might want another baby after this one – I just can’t do it.  It’s not fair to our family to have me this sick for this long.  So we’re done after this little one makes his or her appearance into the world.  For that reason alone I wish I could savor this pregnancy – but there just is so little to like about it.  I’m very grateful to be where I am.  I’m very grateful to be pregnant and to be growing a whole entire human.  But I can’t bring myself to call pregnancy a joyous experience.  I think it’s miraculous, yes.  And I can’t wait to meet this child and move on with our lives.

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So, you know, I was getting really bored with my pregnancy.  I mean, hyperemesis is so last year.  And preterm labor?  Come on!  I’ve been there done that – it’s not exciting anymore.  So I thought I’d mix things up a bit and try for gestational diabetes.   I mean, sure, not eating for five months would seem to free me from that specific concern, but that only makes it MORE interesting, right?

Yeah…  When I was in the hospital last weekend, the OB I saw said, “I don’t understand why you’re having problems with your blood sugar when you don’t eat.” (I’m taking that a bit out of context, for what it’s worth – he did go on to give me very important information, but that comment happened to be the only relevant piece for this post).  On Monday, I saw a different doctor in the practice and I told him about that comment and he looked at me and said, without missing a beat, “It’s because you’re diabetic.  Very.  Very diabetic.”  Well, duh, I guess.  He’s right, of course, but it was interesting to see the difference in approach (both were fine with me, for what it’s worth).  The doctor on Monday said the bottom line is that it doesn’t matter why this is going on.  Sure, it’s an intellectual curiosity, but when it comes down to it, the important thing is that hyperglycemia isn’t good for mom or baby, so we have to fix it.  If we figure out the “why” along the road, it’s a bonus.

Glyburide didn’t help enough (at all?), probably in large part because I couldn’t consistently keep it down.  So I started insulin on Tuesday.  And my BG just keeps going up and up and up.  I talked with the doctor on the phone today because my blood sugar is still all over the place (223 at 5am yesterday!!  223!!).  My perinatologist had suggested moving the insulin to twice per day and I’d left that message with the OB on Wednesday, but didn’t hear back.  I checked in today about the high levels and he said to move my dose up by 60%, but not to move to twice a day yet, because he wants to get my early-in-the-day sugars under control first, because if he tries to treat the later-in-the-day levels before he gets the morning ones under control, he could risk over-medicating me and having my blood sugar crash.  He acknowledged that when I go in on Monday with the results from the weekend, we’ll probably be considering adding in a morning insulin dose also, so it’s not that he’s not being aggressive, just that there’s logic to his approach.

I noted that the levels just keep going up and he reminded me that as the pregnancy progresses, it’s only going to go up and since I can’t just shift my (nonexistent) diet, the insulin is going to have to be tweaked regularly as well.  I also just went up on my terbutaline dose, which can also affect blood sugar, so it’s something we have to work around and be cognizant of.  Seriously, leave it to me to have hyperemesis and crazy blood sugar at the same time.  Yee-haw!

I will note that it was particularly hilarious to have to go have a nurse show me how to draw up and administer the insulin (a subcutaneous injection).  I’ve probably done a thousand subcutaneous injections on myself.   But it was still good to walk through it with the nurse so she could explain what things to be careful of and what symptoms to look for if my sugar crashed.  We had to brainstorm a little bit about how to handle it if I do crash- her normal advice is to drink 1/4 cup of orange juice.  But I can’t do that.  But we came up with other solutions, and I was given strict orders to call immediately if I couldn’t get it back up.

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We’ve been playing the medication shuffle with J’s medicines for months (years?) and it just feels like it will never end. In fact, it might not. In October we stumbled upon an unconventional, but effective, medication combination. We had high hopes that we’d finally found the solution – but, like every new protocol, the success was short-lived. Every new protocol we try works. Until it doesn’t, that is. It’ll work for a few days, a week, a month… but never for long.

In some ways, life before a diagnosis was easier.  Before we knew J had ADHD, he was just… J.  Before he’d ever been medicated effectively, we didn’t know how much easier it could be.  He was just J.  Once we’d had him effectively medicated, the times when he wasn’t well medicated became unbearable.  I’m not clear if it’s because the ADHD etc. has gotten progressively worse or we’ve just become less accustomed to it.  I think it’s actually a bit of both.

It’s no secret that we’ve really struggled with J’s medication protocol.  Medications nearly always work, but we always, always hit a wall – either he’ll start refusing to take it, or he’ll still take it, but it ceases being effective.    It’s frustrating, because it’s easy to believe we’re just not on the right track at all, but we’re also a bit at a loss for what else to try sometimes.  We’ve had to “think outside the box” a lot more than any of us are comfortable with, including our extraordinary developmental pediatrician.    We’ve spent a long time dancing around it, but ultimately decided it was time to add in a neuroleptic and see how things go from there.  But, cautioned Ye Old Developmental Pediatrician, it would be prudent to seek a second opinion.  He pointed us to an excellent child psychiatrist from the National Institutes of Health (NIH) National Institute of Mental Health (NIMH).  He didn’t have any super-genius rats in his office, but from what I understand, he’s one of the foremost experts in the field and has written much of the research literature out there relating to the issues we’re dealing with.  He also, apparently, has a reputation for shying away from neuroleptic medications for children because of the side effect profiles, and he definitely “thinks outside the box” and uses therapies that might otherwise be considered unconventional, but has had great success with them.

I was really pleased to be able to get a series of appointments set up with him very quickly after I contacted him.  I gave him what I thought was an unnecessary warning that there was always the possibility that I wouldn’t be able to make it to some or all of the three appointments  we’d set up since I was having a complicated pregnancy.  We had a parent-intake appointment, an appointment for J, and then a third appointment to get his recommendations all set up.  And… of course I got admitted to the hospital the day before the parent-intake appointment.  J, unfortunately, was simply deteriorating too quickly to postpone until this pregnancy calms down (e.g. after delivering this baby!) , so Seth went without me.  I figured I’d for SURE be home before J’s appointment  – five days later.  Nope.  Missed that one, too.  I sent the doctor a very long, detailed email with J’s history, including the very little that we know about his prenatal and early infancy history.    The doctor said that it was so helpful and thorough that we almost could have done away with that first appointment.  Truthfully, I’m not sure that I could have written it as thoroughly as I had if Seth hadn’t told me what kinds of questions the doctor had been asking in the first place, so it’s unlikely that we could have skipped that first appointment (and $300!!)  if I’d been able to pull it together sooner.  (it was a really, REALLY long email!)

But I was finally able to make it to the final appointment with the doctor.  He was extremely nice, very thorough and helpful.  It was really great to talk to him and I’m glad we got his input.

I will say that any time we speak with a new specialist, we have this hope in the back of our heads that we’ll hear “Well, Dr. & Mrs. Perky, you’re clearly doing everything wrong.  If only you do these things differently, everything will fall right into place!”  I mean, really, that would make our lives a lot easier, right?  I could handle being told that I’m approaching this parenting thing all wrong, if only it would make it all easier.  Hah!

I shouldn’t be surprised that we didn’t have that “eureka!” moment – but I still wish it would happen some day.  What we heard, instead, is that we’re doing all the right things.  He reinforced that J is very lucky to have us (we’re very lucky to have him, so it’s all fair).  He said that the medication protocol we’re on is exactly what he would be doing, but suggested being cautiously more aggressive with dosing.  We had started J on Abilify just about the time that we set up these consultation sessions, but we were on a pretty low dose.  He was pleased to hear that we’d already moved the dose up, and suggested that we’d probably need to raise it more than once.  He did, however, note that Abilify often has a “ceiling effect” – where the drug will work for a while, but then gets to a point that it’s not working well enough and raising the dose doesn’t change the effectiveness (just increases the side effects).  He had a few other suggestions if the Abilify doesn’t work in the long term, but he felt that it was a good option at this point.  We’re not seeing any significant effect from the Abilify – but it’s still early and we’re still at a pretty small dose.

Once we get the Abilify dosing set, he recommended tweaking the Prozac dosing, and then moving toward augmenting the ADHD medications – they work pretty well, but wear off far too early in the day for J to really be successful.  J is what you call a “fast metabolizer” which is okay, but does make it difficult to keep him optimally medicated, particularly when he is so non-compliant about taking medicine in the first place.  The Child Psychiatrist noted that there are no pharmakokinetic studies in children, only in adults.  His experience, however, is that any XR (extended release) formulation of these medications don’t work as well with children as they do with adults.  I quite agree, but our hands are a bit tied on that one, because we have to maximize medication in as few doses of medicine as possible, since it’s incredibly difficult to get him to take medicine reliably.

So it’s still a work in progress.  But at least now we have further confirmation that we’re on the right track.   No magic answers, but just knowing that we’re not doing *everything* wrong is comforting.

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Saturday I got admitted to the hospital again for contractions that wouldn’t quit with multiple and frequent terbutaline boluses.  Fortunately, I was allowed to go home mid-morning on Sunday as I hadn’t dilated any more and the contractions stabilized.  We discussed using Mag Sulfate, but ultimately decided the risks outweighed the benefits.  I had an OB sono w/BPP (biophysical profile) and cervical assessment around 4am.  The sonographer had a really difficult time waking the baby up for the BPP, so it was almost a problem (sono has to see baby movement to give the baby credit), but ultimately, everything was fine.

In the morning, my doctor  came to talk to me and then he consulted with the perinatologist.  They ultimately let me go home, but not without a long discussion with my doctor first.  The good news is that I’m not dilating further.  The bad news is that I keep doing this, and other weird things.  He doesn’t understand why my blood sugar is all wonky (neither do I), he doesn’t understand my propensity for severe and frequent contractions (neither do I), he doesn’t understand why this isn’t easier (neither do I).  He said his hands are a little bit tied in terms of how to treat me because I have such a hard time keeping oral medication down.  Prescribing Indocin would have been a logical step to take  on Saturday, but I’m having a hard enough time keeping the Gylburide and Procardia down regularly (fail on Glyburide, in general; 60% or so success with Procardia).  Since their normal arsenal of treatments are severely limited by my hyperemesis (which also limits my ability to hydrate, another common treatment for PTL contractions), their options are to keep upping the terbutaline dosage, or do periodic “mag washes” (sometimes the body grows resistant to terbutaline, which is usually temporarily fixed by pulling the terbutaline and running mag sulfate for 24-48 hours before restarting the terbutaline).  If Mag were a benign drug, we would have just done that immediately on Saturday, but it’s not.

He also wanted to talk to me about the “method of delivery.”  Baby is still breech. Under normal circumstances, the answer would be “there’s PLENTY of time for the baby to turn before your due date!” But in my case, it’s becoming less of a question of whether there’s time to turn before my due date, and more a question of whether the baby will turn before I have to deliver this baby. I never thought I’d live in greater fear of delivering my singleton prematurely than I did regarding the triplets.  He’s not willing to deliver a breech singleton – as far as I know there are others in the practice who would, but honestly, given everything that has gone awry in this pregnancy, it’s not a risk I’m willing to take anyway, to be honest (and please don’t regale me with stories of how your breech baby was delivered and is perfectly fine – it’s not something I have an issue with other people doing, but the way things have been going with me and *my* pregnancy, I know that for *me*, this is not a risk I’m willing to take).  Obviously, if the baby turns, VBAC is still on the table.  Yes, I know the baby can still turn – I don’t need you to tell me that.  But it wasn’t unreasonable for the doctor to bring the topic up.  His biggest concern is that because I contract so much, it would be easy to blow things off and say “oh, but you always do that” and not bring me in for monitoring when things get worse.  The last thing he wants is for me to come in 5-6 cm unbenownst to me and have a cord prolapse and a premature baby.  So the abundance of caution will continue to prevail (I’m fine with that).

Every week that goes by he gets less and less worried about the outcome of this pregnancy.  I’m moving closer and closer into a “safe” zone.  At this point, the odds are good that if I delivered a baby today, the baby would be fine in the long-term, but would spend a good deal of time in the NICU.  Obviously, I want to avoid another NICU stay, if possible, but there’s some small comfort in knowing that at this point the baby is in a developmental stage where the medical community is well-equipped to care for  him or her, should I deliver this baby today – or in the near future.

All this being said, I’m still half-convinced that left to my own devices, I’d have a 42 weeker, just to spite me.  I won’t be left to my own devices, though.  Between the VBAC and the (ridiculously illogical) gestational diabetes, I won’t be allowed past 40 weeks, and they won’t induce.  Some doctors *will* do an induction for a VBAC, but my doctor will not – and again, we’re on the same page there.  I wouldn’t let them induce me for a VBAC either.  He has no issue with me going into labor on my own and delivering a healthy (vertex) baby, but all other scenarios are out.  Also, they want me to labor at the hospital, not at home, so I can be better monitored in case of rupture.  I’m not sure how I feel about that, but at this point it seems to take a special kind of hubris to even entertain the notion that I could ever get close to 40 weeks with a vertex baby.  My guess, though, is that this baby’s just messing with us, and it’ll all be fine.

I hope so, anyway.

The doc said “your body does really weird things when you’re pregnant; I wish I understood why!”  I replied that I think it’s G-d’s way of emphasizing that I need to never do this again, EVER.   He said “that may be a good idea.”  I told him not to worry, I’d never again darken the doorstep of my RE’s door – “oh, well, he has the easy part!  He gets to cut you loose at 6 weeks and then we’ve got to figure you out!”

I still feel like everything is going to be completely fine in the end.  But I still feel… cheated?  lost? I’m not really sure what the emotion is.  But I really do wish I could have a non-anxiety-inducing pregnancy (and to be fair, I do think I handle the anxiety relatively well – but this pregnancy is all about testing how well I can handle it!).  I know that not every woman enjoys pregnancy anyway, but the thing is there are still plenty of things I love about being pregnant.  But this has been far from an enjoyable experience overall.   It is cliche to say that all that matters in the end is a healthy baby.  It is certainly true, but it doesn’t make the here and now a whole lot easier to take on a day-to-day basis.  I just wish that I had much hope of smooth sailing from here to the end.

And now I must dash off to another OB appointment – at which I expect to be told my blood sugar is still crazy and uncool.  Then the question is what to do about it?  Bah.  Stay tuned…

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