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Karen's Musings
Random Rambling
So I am giving fair warning that there is no purpose to this post beyond pure complaining and whining. I just feel like the universe is out to get me. Even ignoring all the other things going on in my life that are going to hell, but the medical issues alone that I've got going on right now are becoming overwhelming...

I still am not eating after the pregnancy from hell. No one knows why, no one can explain it. But I'm extraordinarily tired of being sick to my stomach.

I have persistent thrush (so does Tobie). If you don't know what this means and/or you've never experienced it, thank your lucky stars. It is incredibly painful (for me - uncomfortable for Tobie, but probably not painful). I'm now on a more effective treatment - here's hoping it works. Quickly.

Now I've got a high fever and severe abdominal pain. Today is day 3 of the fever and pain. No one knows why.

I have a (new to me) "very pronounced" heart murmur. Apparently new heart murmurs that surface at the same time as a high fever are sometimes really bad juju. There could be a connection, or it could just be coincidental.

I might have a kidney infection. Kidney infections are not fun - I know from experience. Well, it could be a kidney stone (but my guess is no). I haven't had one of those for a while (since I was pregnant with the triplets), so it's about time, right? Riiiiiiiiiiiiight. For the record, it's not like kidney stones are a lot more fun than kidney infection.

I have two broken teeth, and apparently another tooth that has cracked. One of the broken teeth isn't salvageable - it needs to be extracted, probably followed by an implant. The cost, even with insurance, is overwhelming. Never mind the time it will take to make this possible. If you have good teeth, thank your lucky stars. I've got genetics going against me, but also the fact that I grew up without flouridated water. Apparently, that's not a great idea. Flouridated water is good juju for healthy teeth.

There are several other things wrong that are TMI, but aren't quite so egregious.

I have an endoscopy scheduled for tomorrow. I now also have an echocardiogram scheduled for Friday. Bring it on.

I am tired. I am tired of the emotional turmoil that's been going on in our lives, and I'm tired of being sick. I'm tired of not being a fully functional member of this family. I'm tired of not being able to carry my weight here (and my weight, if you know me personally, is not insignificant). I'm tired of having to beg my body to get up out of bed every morning.

I'm just tired. This seems to be a recurring theme in my life.

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Have I introduced you to my beautiful daughter, Tova Lieba?  Tova = "good" in Hebrew and Lieba = "loved one" in Yiddish (also "heart" in Hebrew, as in "good heart" or "kind heart").  We'll call her Tobie to keep up with our West Wing cast... (Abby, Ellie, Sam, now Tobie.  I think we'll start calling J-man Jed)

So let me tell you a little bit about how Tobie came to be born, a month early and not a moment too soon...

This is really obscenely long...Collapse )
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Introducing...

Tova Lieba!

We'll call her Tobie.  Tova = Good in Hebrew, and Lieba = "loved one" in Yiddish (also, "heart" from the Hebrew lev - as in "good heart" or "kind heart") 

Pictures here: http://picasaweb.google.com/Estie2972/BabyGirlCohen#slideshow/5464404359578510962

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If you haven't seen on Facebook, my still-nameless Baby Girl was readmitted to the hospital this afternoon for high bilirubin levels.  She's doing fine - much better than this morning, that's for sure - but I'm still tired of hospitals and anxious to be home at some point...  

Anyway, she's tanning herself under the bili lights, complete with beach sunglasses (blindfold, really).  She's incredibly ticked off about the blindfold, actually - and I don't blame her.  She keeps taking it off, and while I applaud her independent, rebellious spirit, I wish she wouldn't.  We don't need her to have problems with her eyes on top of all this.  She's the fifth baby - she doesn't get to be high maintenance!  (Just kidding - obviously she's already asserted that she'll be the judge of high maintenance.

Here's my precious girl:
 

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I was admitted to the hospital Friday for low (basically no) amniotic fluid.  Despite rehydration overnight in the hospital, the situation didn't improve, so I delivered our beautiful baby girl this morning, April 25th, at 10:11am.   She's a month early, but perfect of course.  Weighed in at a gargantuan 5 pounds 9 ounces (over twice what Abby weighed at birth!).  

Trying to get the pictures off the good camera, but haven't managed it yet, so here's one not-so-great picture to tide you over:


  

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Yesterday I got a shiny new PICC line.  I'd been having problems getting #3 to run fluids, and eventually even the Zofran wouldn't go through it very well.   The sutures holding it in place had come out, and the tip had migrated, so it was in the wrong place.  All good reasons to get it checked out.  But the radiologist at the hospital yesterday was pretty ticked off that I was there taking up his time.  "But you're pregnant!  There are risks!  Don't you know there are risks?!  And the baby is taking up more room than the last time you got a new line.  It's not safe!"    Um.  Yeah?  There are risks?  Are the risks greater than the risks of me getting no fluids for the next couple months?  No?  Then at least look at the line.  Pretty please?  

Well, he took a look and the tip had migrated and to make matters worse, it was against the sidewall of the vein, and it was too occluded for him to be able to fix it - so I got a new line.    I admit, I felt a little vindicated, since earlier he had implied that I was wasting his time.

Meanwhile, the overall crappiness of this pregnancy continue to vex me.  I've got really awful carpal tunnel syndrome - it hasn't been this bad since I left my music degree program.  Every morning I wake up and my hands are in agony - can't bend them, can't feel my fingers, the pain in my wrists radiates all the way up my arm. It sucks.  I know this will likely largely resolve after I deliver this baby - but it's unlikely to go away completely since it was already a problem for me in the first place.  So I'm seeing a hand specialist on Monday.  (And no, wearing a brace at night doesn't help)

My blood sugar continues to be ridiculously high, particularly toward the end of the day.  Fortunately, my fasting levels are fine most of the time, which turns out to be better news than I knew.  The perinatologist told me today that it's typically the women who struggle with their fasting levels that are more highly predisposed to diabetes later in life.  So I have at least one plus on that!

I'm in pain a lot of time, walking is excruciating, I have terrible headaches, and I have horrific acid reflux.  I was getting IV Zantac for the acid reflux, but there is a national shortage on IV Zantac - so I have been switched to IV Pepcid, which finally arrived today.  Here's hoping it helps.  
Most vexingly is that I'm starting to have difficulty sleeping - not because of all the normal reasons - but because I have been having ridiculous dreams.  Nightmares, really.  But they're odd.  And I don't like them one bit.  

Home stretch or not, I won't feel better about this until delivery day.  Yes, I know that compared to when this all started there's hardly any time left at all in this pregnancy, but it frankly doesn't make the here and now any more pleasant.  Can't wait for this to be over!

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I've gotten a few inquiries about my well-being on account of the fact that I haven't been posting.  So let's get the most important bit out of the way - yes, I'm okay.  Yes, I'm still pregnant.

I've had an upper respiratory infection and there's also been Passover taking up my time, so I haven't been online much.  There's also the fact that there's really nothing to say - things are pretty much status quo.  Still on insulin, still not keeping food down.   Still getting IV fluids and medications.    Now also have carpal tunnel syndrome (well, I've had CTS since I was 15, but it's been excruciating in the last month or two),  and, you know various other irritating things.  But I'm still pregnant.  I now get weekly NSTs and weekly BPPs.    Bed Rest, Shmed Rest, right?

People keep telling me that I'm in the "home stretch", like that's supposed to make me feel better.  It doesn't.  I know that makes me a bitter old hag, but it doesn't make me feel better.  I don't care if  I'm due in two months or two days or two hours - until it's OVER and the baby is on the OUTSIDE, it's still not any fun.  I will be happy when this pregnancy is behind me.  And yes, I do still fully accept the title of bitter old hag.

Honestly can't think of much else to say.
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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.

Poor Seth 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 Julian, 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, 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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I posted something in the pregnant community today because I completely lost it while watching some reruns of The West Wing today.  They were running the two-part episode ("In the Shadow of Two Gunmen" - the season 2 premier episodes) where Josh and the president are shot and in surgery.  Every hospital scene that flashed had me sobbing. It seemed like an over the top response to have and while I know that pregnancy is this hormonal emotional roller coaster for many women, but I've never really had this kind of response before. (don't get me wrong - I'm hormonal... my temper is shorter than ever and I snap for no good reason frequently, but crying? Not as much.)

I received a lot of responses most of which boiled down to "you're totally normal." But the BEST response I've received so far was this one:

"It's okay to cry at tWW. It was the best show on television, ever. ;-)"

That just about summed it right up.

(and in my defense - that's an incredibly well written, well acted, and well executed episode).

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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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So, I'm not quite the six million dollar man.  And I can't say I have much in common with Lindsay Wagner (of the original "Bionic Woman"), but I'm beginning to feel like I ought to have a fancy name like that anyway.  I currently have a PICC line, two infusion pumps (one that runs through the PICC line and one that is run subcutaneously), IV Fluids and medications, and a home uterine contraction monitoring system that I have to strap myself to a minimum of two hours a day (it's usually 4-5 hours per day).  Going to the bathroom is... an ordeal, to say the least.  It's so easy to get tangled up in tubing and wires, and it's frankly too complicated sometimes to figure out what has me attached to what.

So imagine my amusement today when I went to the OB's office and got threatened with an insulin pump.  Because I didn't have enough infusion pumps.  Oh well,  at least insulin pumps are small.

Here's the thing, though:  how exactly does a woman who doesn't eat end up with gestational diabetes?  HOW?  My blood sugar levels have been ridiculously high.  The first few days that I was checking my blood sugar 4x a day, they were a little high sometimes, but on average were basically okay, if borderline high.  But after the first few days, my levels kept creeping higher.  And higher.  And higher.  Yesterday I was at 181 at noon.  I'd had IV fluids running all day, yes, but that's (at most) about 25 calories per hour.  That's not enough to blow my sugar that high.  Terbutaline can raise blood sugar, but how much?  Steroids can raise blood sugar - but I haven't had steroids in nearly a month, so that's not what's effecting it either.

Ultimately, it doesn't matter WHY or HOW my blood sugar is elevated.  What matters is that hyperglycemia isn't good for moms and growing babies.  So whatever the cause, it has to get under control.

So my doctor has prescribed Glyburide, with the curious instruction to take one tablet every morning before breakfast.  Um, before WHAT?  Yeah.  I told him I wasn't sure I'd be able to keep it down regularly enough to matter (though now that I have them at home, I can see it's a TEENY TINY pill, so at least it has that going for it).  So if I can't keep the glyburide down (or it doesn't work), I get to get an insulin pump.  He also ordered labs to check my hemoglobin A1C level.

Of course, the OBs office does not coordinate an insulin pump - they'll send me to an endocrinologist to handle that.  Because I don't have enough doctors and specialists in my life.   Oh, and I get to start having weekly appointments with the OB (in addition to my appointments with the perinatologist).  Because I don't have enough appointments in my life.

Someday I'm going to write my memoir and no one will buy it because they'll say "this chick made up every word of this!  It's too preposterous to be fact!"

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You know?  I haven't watched ANY of the winter Olympics.  This is very uncharacteristic for me.   Seth was really shocked when he found out what an Olympic fanatic I can be.  I typically have very little interest in televised sports (though I admittedly have far more interest than Seth does!!).  But I *love* the Olympics.

I wonder what's different this year.  I mean, I've got PLENTY of time to watch it while I'm on bed rest, after all, so that can't be it!

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 Happy birthday osewalrus !  We are so blessed to have you in our lives, and appreciate your friendship far more than you could possibly know.  Thank you so much for including us in your life - I'm looking forward to being, you know, not on bed rest, so I can have you over to dinner to (belatedly) celebrate properly!
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I have to test for ketones every morning, what with the hyperemesis and all.   Ketones, apparently, are not good for baby.  Until I started getting IV fluids with dextrose in them every day, I was spilling ketones like mad (150+).  I'm sure that contributed to my very rapid weightloss in the beginning of this pregnancy, and I'm sure having stopped the ketosis is the largest contributor of me having been able to remain relatively stable since.

Anyway, I got a new box of the ketosis test strips this week and I note, with some irony, that it highlights on the box, "Great for a low-carb lifestyle!"

Now that is an understatement if I've ever heard one!


 
Speaking of iron, my iron is still low and my OB practice is encouraging me to keep taking those iron supplements. You know, the ones I can't keep down on account of the hyperemesis? Yeah, those.

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 No, seriously, if you have a weak stomach, this probably isn't the post for you - blood and guts and gore ahead...

Cut for blood and guts and gore! Read at your own risk!Collapse )

What?  I did warn you that this post is not for those with a weak stomach.  I did tell you there'd be some blood and guts and gore involved in this post!

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I am so very tired of throwing up.   Today has been particularly horrendous - I'm hoping that this is just a stomach bug and not a sign that the Zofran and Phenergan aren't working anymore.

Ugh.
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The other day I was on my way home from dropping J off at school, and I hit a huge pile of traffic a couple miles from home. With all the snow we got earlier in the month, lanes disappear without warning, roads are closed off so that dump trucks can haul away snow, etc. It does no good to get upset about it- it's no one's fault, and there's nothing that we can do about it anyway. But try telling that to Washingtonian drivers. Sheesh. They're all there honking, making rude gestures, scowling, screaming into their cell phones about the traffic.

I'm not above all that - I admit. But having no place to be, for the most part, these days has definitely given me some ability to just roll with it. I may not be totally comfortable sitting in the car for that long, but I get far less agitated about it. Still, it seemed like I was the only one around who wasn't really angry at that moment. Until, that is, I noticed the driver on my left side. She was bopping along to whatever music she was listening to, clapping her hands, smiling wide, and belting out the lyrics with wild abandon. It's been a long time since I've seen someone enjoying life with such wild abandon - and it's really a breath of fresh air to see that.
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Yesterday, I had about an hour between when my nanny left for the day and when Seth and J got home during which I was on my own with the triplets.  I don't get a lot of time with them these days - I can't really handle being alone with them for long, and as I just don't have a lot of energy, and being too active aggravates both my hyperemesis and my tendency to have contractions.

So I sat them down with some snacks and crayons/paper.  They had a good time, but eventually, I needed to stop sitting up, so I moved to the recliner, and the triplets kept bringing me books to read to them.  They curled up in my lap and smiled and giggled and just enjoyed being kids and having Mommy all to themselves.  It was lovely.

I realized that it's been a long time since I've been able to just enjoy my children.  It was nice to be reminded that this is what it's all about.  This is why I am willing to go through this hell that is pregnancy. Because I enjoy my children.  Because I wanted all these children and this beautiful family.  This is all worth it in the end

I think it's important not to lose sight of the reason for all of this.   I love my husband.  I love the family we've created together.  I love that our adventure in parenting is moving on to a new stage.  I love my children.  My life, while not without complications, is pretty darned wonderful.

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So I was all geared up to write about Nurse Ratched from my last inpatient experience at the hospital, but I've lost my fire for the topic.  Probably for the best, because well, I should probably learn to simply be more appreciative of the good things in life, rather than critical of the negative things.  But hey, before I get all holier-than-thou with gratitude for my many blessings and whatnot, let's cut the crap and get to the real reason that I've lost my fire for writing about Nurse Ratched:  I have something far more annoying to write about instead.  Come on, you didn't actually believe me about focusing on the positive, did you?  That's Crazy Talk!

So earlier in the week, I had to go to the Emergency Room because there was Yet Another Issue With My PICC Line (YAIWMPL).  When I had the new line placed in the hospital, it was not sutured down (as my second line had been), but the nurse used a statlock to anchor the line.  I knew then that this was a recipe for disaster, as my reaction to the statlock adhesive was severe enough with my first line that it compromised the site and the whole line had to be replaced.  But the nurse at the hospital was not permitted to use sutures, and if I hadn't been so stupid, I would have requested that she find a doctor or PA to do so in lieu of the statlock, but I'm a moron.

Shockingly (not), when my home health nurse came a week later to change the dressing, I had a severe, infected, skin reaction to the statlock adhesive.  And so I got sent to the ER.  Normally, I would go to the ER near my house, but my OB doesn't have privileges there, so I wanted to make sure I was in the hospital where my OB has privileges in case any orders needed to be obtained.    It turns out, I hate the ER at SG where my OB delivers - the ER at my local hospital is MUCH BETTER.  Nevertheless, I got what I needed - my line was sutured down, and the statlock was thrown away for good (I hope).  However, I had a very negative experience overall because of the unprofessional conduct of the nurse supposedly "caring" for me.

I wrote a letter to the hospital administration, and I have been assured a timely response to my concerns.    The letter not only addresses the ER visit, but also summarizes some of my chief complaints from my recent inpatient stay as well.  I hadn't been planning to write about the inpatient experience, but since I was writing again anyway, I figure it can't hurt.  The letter follows (beware, it's really long!):

Read more...Collapse )

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My nanny is sick.  With the stomach bug that we gave her, so I can hardly fault her.  Seth is working.  Julian has no school (but does have speech therapy at 5pm - not sure how THAT'S going to happen).  Just me and the kiddos.  Am seriously wondering why I ever let them release me from the hospital.  

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I have a bunch of things to post about - Nurse Ratchet, Blizzard Consequences, Stomach Flu, Random Cute Kid Things

But I'm so unable to keep my brain focused right now that I can't do a thing about those impending posts other than think really hard about wanting to write them. The terbutaline is still making me pretty shaky, which is both mentally distracting and physically gets in the way of coherent typing or writing. Hopefully it'll all calm down soon enough and I'll be able to think again.

Or not.
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So when we were living in Spain, my parents were fond of a tradtional toast. Every new drink was toasted as "!La Penultima!" (the second to last). I'm kind of feeling that way about the hospital. I came in on Wednesday for "a few hours of monitoring" and ended up being admitted "for 24 hours". Then all hell broke loose and I landed myself on Mag Sulfate for a day and a half, and they said they'd probably try to let me go Friday. Friday they didn't let me go b/c I was still contracting and there was the impending snow. Saturday they said "just one more day." Sunday they said, "Just one more day." Yesterday they said, "just one more day." I feel like I'm on my perpetual penultimate day of this almost-week-long hospital stay. I'm frustrated, and I'm sure Seth is even more frustrated. I'm tired. I'm ceasing to feel confident in the medical care I'm receiving (I think the DOCTORS have been totally on top of things - but the nurses are... not always, and THEY are the ones providing most of the direct patient care.

This takes me back to that one summer I spent in North Carolina in summer camp. I was miserable there, not because camp wasn't good and not because I wasn't learning a lot. But the people. The other campers in particular... It was just too much to be cared for by strangers for that long. I just wanted to go home. And now? I just want to go home. I really hope today isn't another penultimate day in this endless stay in my hospital room.

I wouldn't care so much about being here for days and days on end with no real definitive timeframe for parole, except that the longer I'm here, the more things that are falling through the cracks. Or maybe they've always been falling through the cracks and I just didn't notice in the first few days. Either way, the devil is in the details, and no one here seems to be a devil worshiper.

The Gory Details - Not for the FaintheartedCollapse )

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Every nurse who has come on-shift since I was admitted on Wednesday has been shocked that I'm not eating. I mean, I get that it's not normal, but there's bound to be a notation in my chart somewhere that says "hyperemesis gravidarum" right? They give each other report at the start/end of each shift. And yet? Every nurse that's come on shift has said, "You ate [dinner/breakfast/whatever], right?" Um, no. I haven't had a tray in my room since I came in here (a couple of nurses have offered trays - so it's not that I'm being neglected, it's that I have no desire to have a tray of food in my room that I know I'll never touch).

It's not limited to the nurses, though. The OB on call came in today to assess me and let me know "the plan" - which is to keep me here at least until I get my 17-P injection tomorrow and a new PICC line (one of the lumens on my existing PICC line is completely obstructed and the medication they usually use to dissolve issues like that isn't used in pregnant women). But she paused and asked where the terb pump was running - it's subcutaneous. "Oh, well, you don't need the PICC line then." Um. Yes, yes I do. The Zofran pump runs through the PICC line and I can't run that one subcutaneously even if I wanted to - because doses as high as I'm getting would tear up my skin if done sub-q. Oh, and there's that hydration thing. "Well, you can't take the Zofran ODTs? You need the pump at home, too?" Yes, I need the pump at home, too. I can't keep the ODTs down. (Also, they don't work as well as when the drug is continually infused). "Why do you need the fluids?" Because I can't drink anything of substance? "Really? How long has this been going on?" Um. September. I get that she wasn't my doctor back in September when this started, nor in October when I was hospitalized for dehydration due to hyperemesis gravidarum, nor when my first OR second PICC line were placed. But I still find it hard to believe that there's NOTHING in my chart ANYWHERE that mentions that I'm hyperemetic. The doctor conceded that I do need to keep my PICC, so it'll be replaced tomorrow.

Seriously - the nursing staff keeps very close tabs on my "I's and O's" (Ins and Outs). They know what I'm taking in. They know I'm not drinking. They *should* know I'm not eating (no food trays have come into or left my room since I've been here). And yet, they seem shocked when they hear that I haven't eaten since before I was admitted. How do I make it more clear? I really hope I get to go home tomorrow. I'm growing weary of the hospital (a.k.a. the worst hotel EVER).

In other annoyances:
  • My skin is so dry that it's becoming abraded. My knuckles are cracking. My legs are itchy. My lips are chapped and split. Apparently the air is very dry in hospitals - and more importantly, I'm not getting a lot of fluids, so my skin just can't stay hydrated. This is annoying, but hopefully I won't be here much longer. If I had to move in for the duration, though, I'd have to get a humidifier or something.
  • TMI Alert: One of the best things about getting OFF the magnesium sulfate is that they removed my catheter and let me resume "bedrest with bathroom privileges". Except, it's really a pain in the neck to get up to go to the restroom. I have to unplug the toco monitor (contraction monitor) and wrap the cord around my shoulders so it doesn't drag. I have to untangle my Zofran and Terbutaline pumps. I have to undo the sequential compression stocking things. I have to unplug the IV Pump. And then I have to carry everything to the bathroom. Then I come back and I have to plug in the IV Pump, untangle the Zofran and Terb Pumps, and plug the toco monitor back in. And get myself back into bed, which is a much more difficult task than it sounds. I am ready to be home where it is less of a production just to get up and pee (mind you, even at home it's a production, but at least there are SLIGHTLY fewer things to unplug).
  • I have the toco monitor on my belly 24/7 to monitor for contractions. It stays on with a softish belt that straps around me. It's not tight, but it *is* against my skin 24/7 and now the skin on my belly is abraded from the constant contact. At least at home I'll only have to have have the toco monitor on for an hour at a time (minimum of 2 times per day). That will definitely be an improvement.
  • Several times per day, they do NSTs (nonstress tests) - this means that in addition to the toco, they put a fetal heart rate monitor on also. This evening during one such NST, the baby's heart rate decelerated with every contraction I was having. This is... not good. Fortunately, I'd just recently gotten Procardia, so the contractions went down shortly thereafter. Hopefully, this will not reoccur because I'm... not actually sure what all the implications of it recurring would be. I'm pretty sure it's far too early for me to want to find that one out the hard way.
     

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