Sunday, August 05, 2007

Enough of the Self-Pity (Updated at Bottom)

Right. Well, that's quite enough of the self-pity. Or at least, that particular variety. I will now move on to an entirely different kind of whining. Pregnancy whining. Okay, I get it, there are lots of you out there who would give nearly anything to have the opportunity to whine about pregnancy, and I get that. So I'm sorry if it offends you that I don't find all of pregnancy all sunshine and light. Maybe I would if I had a singleton pregnancy, maybe I wouldn't. What I do know is that we infertiles HAVE to give ourselves permission to accept that there's nothing wrong with us for finding out that sometimes pregnancy isn't glamorous and sometimes parenting isn't perfect and sometimes we aren't always gracious about either one. Therefore, disclaimers aside, here are some of the good and the bad of late:

Good: I had a pretty decent week last week in terms of contractions and other such things. My appointment went well, my cervix had stablized and in fact lengthened somewhat, I even got a little cocky about it ("I don't need no stinkin' bedrest!") but not to the point that I violated doctor's orders. Contractions weren't done and over with, but I was generally having a good week, and they were definitely under better control than they had been.

The Less Good: The operative word in that last sentence, of course, is that they were under better control. Until Friday. I monitor contractions twice a day. I'm required to send them in every morning, but not in the evening unless I'm feeling symptomatic. I can also monitor any other time of day if I'm feeling off or feeling contractions or just feel like it or whatever. Friday around 5pm I felt a few contractions, but I sort of ignored them, because that's not terribly uncommon and I didn't think much of it. But then a little before 6, I had a few more and I thought, well, that's 4-6 contractions within the same hour, so I probably should call about getting a demand dose of terbutaline. After any demand dose, I have to monitor and send in the data, so that meant my evening data WOULD get sent in, which was fine.

So I called, asked if I could give myself a demand dose, was told yes, and then told to monitor from 6:30-7:30 and send it in. Fine. Except I couldn't get the pump to GIVE me a demand dose. It's a different button than the rest of the buttons and that button stopped working. So they had a work around for it, but that took some time, which put off my monitoring time until about 7ish to 8ish. Which is fine, but Shabbos (the Sabbath) was starting at 8, so the timing wasn't fabulous. I am allowed to do all the medical stuff I need to do on Shabbos, even though a lot of it isn't stuff I'd normally be allowed to do (e.g. using the phone). It's just that there are a couple things I had to do right at 8 (like light candles to bring in Shabbos), so it wasn't terribly convenient. Still, I made it work.

I expected that the monitoring session would yieled nothing interesting since I'd just given myself a demand dose and usually that takes care of the contractions immediately, but the nurse called back and said I had 5 contractions, which is above my "allowed" threshhold. Which meant I was going to have to re-monitor. Great. Except it's Friday night, late, I have a cranky 4 year old, my husband is at shul (synagogue), and I have to deal with remonitoring and once my husband gets home in theory we're supposed to eat a "festive meal" in honor of the Sabbath. (Someday maybe I'll explain the whole sabbath thing to my non-Jewish readers, but really, if you're wondering if I'm completely nutso, yes I am, but if you want more details, just email me... there's a link to my email address in my sidebar) Since 8pm is when one of my automatic doses happens anyway, the nurse wanted me to wait until about 8:30 to monitor again to give the dose some time to work its magic. And so, at 8:30, I strapped the monitor back on while attempting to appease J with some tortellini and some books and a couple cars (yes, he should have been in bed, but it's not like I can struggle with him alone these days).

And at 9:30 I sent in the data again. And while waiting for the phone call back, we started to sit down to dinner, and then, of course, the phone rang. The contractions had gotten much better..3 short contractions, which is under the "allowed" amount (thank heavens, because otherwise, doctor's orders would have mandated a phone call to the doctor on call and I REALLY didn't want to deal with that!), but the nurse didn't love that I'd been having a lot of cramping and it wasn't getting a lot better. So she waffled for a bit about calling the doctor anyway, but I talked her out of it (my doctor didn't seem OVERLY concerned when I'd mentioned it before, plus I promised to call if I couldn't sleep through it which is always my gauge of whether I should be waking up a doctor). She had me give myself another demand dose and encouraged me to call if it got any worse through the night. Fine.

And the next morning was more of the same. Too many contractions, demand dose (which they still had to use the awkward work-around to do, because the demand-button wasn't working) remonitor, better but not perfect, still a lot of cramping, so they changed my basal rate on the pump and got to work on getting a new pump programmed and couriered out to me. The increased basal rate did seem to help a bit throughout the day (it had also been increased the day before, so it had cumulatively been increased about 30% from two days prior). I didn't do an evening monitoring until quite late because I had people here visiting on and off throughout the day. I felt a little funny, but decided not to send in the data until morning since I wasn't required to and since it was so late. I figured I'd send it in the next morning. Turned out it was both a good and a bad choice not to send it in, because I'd had SEVEN contractions (nearly double my "allowed" threshhold) and a lot of irritability. So if I'd sent it in, I would have ended up having to do a demand dose and remonitor at midnight risking calling the doctor at 1 in the morning and blah blah blah. On the other hand, I'm lucky it didn't become a huge deal, since I didn't send it in... Anyway, this morning, all was clear, so life is good. I think I'll do this evening's monitoring somewhat early and go ahead and send it in just for the fun of it.

More Good: I did get the replacement pump around noon yesterday and it's working just fine. I've haven't been alarmingly uncomfortable today. I've got all the usual "hey I'm pregnant with triplets" discomforts, but nothing that's making me go "hey that's not good!" Also the babies have been kicking like mad and I'm pretty sure at least one of them has turned back around, so I'm hoping the others follow suit and SOON!

The Slightly Less Good: Baby A has discovered that JUMPING on my cervix is much more fun than punching it. I'm fairly certain that Baby A is still breech and is remaining that way simply to torture me. Youch!

Good: J is absolutely fascinated by my ever-expanding belly. "Oh Eema, your belly is getting bigger! It's a giant belly now! Why is it getting so much bigger??" Yeah, uh, now that I think about it, I'm less convinced this belongs in the "Good" category! ;) Anywhozit, I said, "Well, what's IN Eema's belly?" He giggled... "Bigger Babies!" "That's right, so Eema's belly has to get bigger so they can keep growing, right?" "Of course, Eema! You need a bigger belly so the babies can grow," he said as if it had been all his idea and he was telling me how the world works. He's really cute.

The Less Good: I absolutely cannot shake this cold. I feel disgusting, and it's making it even harder than usual to keep food down, and worse, it's making it difficult even to keep fluids down, which is bad, because the best thing I could possibly do for a cold is drink a lot of fluids. Sigh. So now in addition to waking up a lot with cramping and full bladder and general discomfort and leg cramps, I also wake up because I can't breathe, I'm parched, and my throat hurts. It's lovely. I'm not sure why I even bother trying to sleep anymore.

The Really Good: I haven't been admitted to the hospital and I'm 26 1/2 weeks. That so rocks.

More Good: I'm no longer completey nauseated every time the babies move. This is a good thing, since they do it ALL THE FREAKING TIME, especially at night. Actually, I kind of love it now, and I think I might miss it some day. I mean, I could still do without the cervix stomping, because honestly, I'm not kidding when I say that really hurts. I mean REALLY hurts. But at least I know the kiddos are still moving around, right?

The Somewhat Annoying: Heartburn really sucks. Definitely in Stretch-Mark Land. I have a weird little hematoma right above my ever-shrinking (but not yet popping-out) belly button and I have no idea why or where it came from. Pregnancy has made my belly embarrassingly furry. I wish there were something I could do about this, but I figure my doctor has probably seen scarier bellies. Right? RIGHT? I'm still getting about 3 migraines a week and tylenol with codeine isn't touching them but I don't have a lot of other pain-relief options. I'm also getting lower-grade headaches from the terbutaline, but those are easier to knock out. The terbutaline also gives me a very annoying side effect of making it uncomfortable to breathe... as if I'd been breathing heavily after running a long distance or something for a while. It's like my throat or lungs HURT when I breathe. It's not like I can't breathe, it's just an unpleasant sensation that I keep hoping will go away and it hasn't. The other terbutaline side effects have at least gotten less annoying even if they haven't subsided completely, but this one is just as annoying as ever.

The Good: My husband? Completely rocks.

On a Completely Unrelated Note:
An anonymous poster has asked me twice now why there are 4-hour auto-doses in addition to a lower basal rate on the pump, rather than having just a higher basal rate that incorporates the auto doses over a longer period of time. I'm not ignoring the question, I'm actually trying to find a real answer rather than just having my own random guesses. My husband is a pharmacist, so you'd think this would be an easy one to get an answer to, right? Not so much. Never mind that he was sitting shiva for a week, so he couldn't do any looking up for me, even now that he can he's super-busy and the bit of research he's done hasn't turned up a lot of clear-cut answers.

What he has found is that generally the auto-doses are recommended to be timed with the peak periods of uterine activity if it is possible to predict that pattern (it often IS possible to do so, apparently). This makes a bit of sense to me as one suggestion that was made by my nurse at some point was to change the interval of the auto doses for more effective treatment.

He also found that taking 5mg pills every 4 hours is effective about 30% of the time for uterine contractions. But that terbutaline pump protocols are effective closer to 90% of the time, so for whatever reason, it works.

What he hasn't found yet (and admittedly, he hasn't had time while at work to wander over to the Health Sciences Library) is a clear cut answer about why it wouldn't work to just have a high basal rate given out 24-7 with only denmand-doses as needed for breakthrough contractions. But if he DOES find an answer, I'll let you know. Also, Erin has a PhD in Pharmacology, I believe, so maybe she can shed some light on this. Or maybe not. I don't know. But if anyone else does happen to know, please let me know, because at this point, I'm intensely curious. Inquiring minds want to know.

(I also just reminded my husband, so he's going to do some more digging around now to see what he can find... I'll update this entry if he finds anything really interesting)

And that's enough for now.

Update per Anonymous' Comment:
Comment left last night: Hey, that's great that you are looking into the auto-dose/basal issue. If there are other options that could serve you better, it would be good to know! Now, are there any at-home IVs you can use for when you can't keep fluids down?

I'm looking into the basal vs. auto dose issue purely as a curiosity. I'm assuming this is a long tested issue at this point as this is very standard protocol that is used regularly for a large number of patients and has been for al ong time, so I'm not guessing that it would make more sense to raise the basal rate and eliminate auto-doses. It seems clear that the protocol of auto-doses combined with a low basal rate does work for most patients. It may be that it lowers the side effect profile to do it this way, and since the side effects aren't real pleasant, that's a good thing. At any rate, I've got my husband on it this week. He's still playing a bit of catch up at work from being out after his father died, but I'm sure he'll find some time to walk over to the library if I nudge him a little.

As for at-home IVs... the short answer is, yes, there are at-home IVs, but I don't warrant one. If my nausea were so extreme that I were never keeping fluids down and I were severely dehydrated and had an electrolyte imbalance, they could do an at-home IV-line for Zofran (which I currently take orally). If that didn't work, they'd admit me. However, my periods of not being able to keep fluids down are generally short-lived and haven't resulted in real dehydration/electrolyte imbalances, so an IV line would be a bit on the extreme side (nor do I want one! I'm already the bionic woman!!). At any rate, yes, it's an option, but not a likely one for me. Good idea though!

12 comments:

Changing Expectations said...

Glad to hear that everything is going okay. Sounds like the terbutaline pump is complicated! I can't imagine how difficult all of this is for you. I have said it before and I'll say it again, "You are a rock star" I am amazed at your positivity and resilience throughout.

Anonymous said...

I am glad the contractions are under control. Is the pump like an IV line in you leg?

Lea Bee said...

26.5 weeks? that is *incredible.* your imaginary internet friends are so happy for you. :)

The Town Criers said...

A lot of good in there. And you're right--it doesn't matter where you came from, you need to be afforded the same valves all pregnant women have to deal with the stress. And that means complaining or crying or bitching or moaning. It doesn't mean that you're not grateful. It means that you're a human being going through a really tumultuous thing and you need to vent or explode.

pam said...

glad to hear you have a lot of "goods" in there. i am dealing with that waking up in the middle of the night with a parched throat thing too. dang sinuses. hope yours get better soon!

26.5 weeks is awesome!

Anonymous said...

Hey, that's great that you are looking into the auto-dose/basal issue. If there are other options that could serve you better, it would be good to know!

Now, are there any at-home IVs you can use for when you can't keep fluids down?

Rachel Inbar said...

Wow. The whole thing doesn't sound all that fun... Congrats on 26-1/2 weeks :-)

LJ said...

Sounds like the plusses are far outweighing the minuses. I also loved the mention of missing them being inside you once they are born - what a wonderful anecdote that you'll be able to share with them.

Chris said...

26.5 - terrific! In fact, if weeks were miles you'd have run a marathon by now.

I hope all that good stuff just keeps getting better.

Carol said...

gosh - lots going on. But you seem to be managing it well. Keep up the good work.

I get the cervix stomping too - it's very hard to describe what it feels like, so I'm glad to see that you can relate. It hurts!

Baby Blues said...

Cheering for everything "good"! Keeping fingers crossed.

Anonymous said...

Oops! I hadn't scrolled down far enough to notice this update when I commented on the two more recent posts earlier.

I am curious too. Of course, you don't need to be burdened with my curiosities. I hope it's clear that the main reason I am asking is not to satisfy my curiosity, and certainly not to challenge anyone, but to be helpful.

I may be thinking too much of insulin pumps, where avoiding unwanted insulin peaks is key.

It very well may be that there is a reason the dosing of the terb should be in peaks every few hours; could be what you mention about side effects, could be -- I'm now thinking -- that the body becomes tolerant of terb if a steady level is infused, but intervals and fluctuations help terb continue to have an impact.

But it could be that the auto-doses are simply a mimic of the oral dosing protocols. I'm not doubting that your pump protocol is standard protocol with decent results, but I am wondering whether the auto-doses were simply created based on the timing of the oral delivery, then the science moved to a combination of the auto-doses and the basal, and soon it will move to a variable-rate basal.

Please don't nudge your mourning husband on my account, but do have him find out, or ask your doctor or the Matria nurse, if you feel further information could benefit you.

I am glad you don't need an at-home IV! Being parched but not able to drink sounded so awful, though, and I sort of automatically imagined you getting fluids -- not Zofran, hadn't thought of IV-Zofran -- via an IV.

Good idea though!

Thank you for writing that! I not only feel validated, but I am inferring that I am not bugging you by posing these questions, that you know I am asking to try to be of help.