new here, with monoamniotic twins - Mothering Forums
Parenting Multiples > new here, with monoamniotic twins
rachelm2's Avatar rachelm2 05:15 PM 04-01-2008
Hi everyone,

I'm completely new to this forum platform, so I'm just trying to find my way around and hoping I'm not messing up too badly.

I am 20 weeks pregnant, after two uneventful singleton pregnancies (my daughters are Rivka, age 6 1/2, and Batya, age 4 1/2). After an abnormal quad screen, we went for an ultrasound last week and were quite surprised to find out that we are expecting twins. Extensive scanning revealed that the twins are healthy, but monoamniotic. Since they are monoamniotic, we are in the process of transferring my care from my (wonderful) midwife to a nearby high-risk pregnancy practice.

As you may understand, we are quite worried for the twins, but are going ahead and hoping for the best. So, I thought I'd poke around at this forum to see what we're in for. I may be lurking more than posting at first.

Any words of advice about monoamniotic twin pregnancies are appreciated. I am also concerned about nursing premature twins (the high-risk practice says they don't usually have monoamniotic twin pregnancies go past 32 weeks, and nursing is very important to us - our older girls both nursed until they self-weaned at age 3!). If there are any books or websites that you have found particularly helpful, I'd appreciate your passing those along.

Take care,
Rachel

HopesMom's Avatar HopesMom 06:10 PM 04-01-2008
I just wanted to say hi and welcome! I hope that the helpful mamas here will be responding to you soon!
vanauken's Avatar vanauken 09:22 PM 04-01-2008
Hi! I have monoamniotic twins. You pm'd me, I think, but for some reason, I just couldn't get the response thingy to work - sorry, not a techie-sort.

But, congratulations!

First off, know that the survival rates that you'll find on the web - the "only 50% of monoamniotic twins survive" just aren't true anymore. They used to be, but in recent years there've been a couple of studies that have found ways to prevent cord accidents (or minimize the damage) with momos. Most monoamniotic twins now survive, with a proper treatment plan.

Here's the problem though: the proper treatment plan is HARD. Totally worth it (and I"m saying this looking at my gorgeous girls who are lying on the couch in front of me as I type), but hard. Because your twins share a sac, they can (and probably will) get their cords horribly tangled. No other twins do this (well, conjoined twins share a sac, but can't really tangle their cords), so it can't be managed like other twin pregnancies. Current treatment is to stick you in the hospital at 28 weeks (or wherever you're willing to consider the line of viability), on 24/7 fetal monitoring, and deliver you (if nothing goes wrong) by 32 or 34 weeks. After 32-34 weeks, risk of a cord accident gets greater than risk of leaving them in (due to bigger, stronger babies).

The point of the 24/7 monitoring is to catch a cord accident as soon as it happens and get them out immediately.

And yes, it has to be c-section, again, due to the tangling of cords.

I know, it's probably not what you wanted to hear. When I found out about the girls' momo status, I cried so hard I gave myself contractions. But, again, it was worth it. I did the hospital stay, the c-section, the NICU stay, the whole bit and it was awful, but it's over, and I have two beautiful, healthy girls. (Who had completely knotted cords. It was amazing.)

And I'd encourage you with two things: 1) even if it's a medicalized pregnancy and birth, once that's over, it's over, and you can go completely back to your AP parenting style. 2) Misdiagnosis of monoamniotic twins is incredibly high. It's easy to miss the amniotic barrier. Make sure you get a second opinion, from a maternal-fetal specialist, on a high-resolution ultrasound machine (normal ultrasounds can miss the membrane).

And I'd recommend monoamniotic.org, because you can talk to lots of other women who've been there. They were really encouraging to me during my pregnancy. (And they even have a forum for people who've been misdiagnosed!)

As for nursing . . . well, we're still working on that one! My girls nurse every other feed, but never enough to fill them up. They're still lazy, sleepy nursers. But I keep trying, 'cause I nursed my older ones too, and I'm determined these little ones are going to learn! (Lord willing!) But I'm pumping, and aside from a bottle a day of preemie formula (for the extra calories), they're getting breastmilk with all those good immunities. And some other monoamniotic moms I talked to said that it just took a good few weeks past due date for theire babies to figure out nursing, but that they did, eventually, and then nursed for AGES. So I'd say there's hope there too.


You can find the studies I referred to at monoamniotic.org, I think.

So, yeah, it's not an easy road, at all. But it's a good one. I mean, there are beautiful babies waiting for you at the end of it! Again, congratulations. You can do it.
Intertwined's Avatar Intertwined 09:30 PM 04-01-2008
Just big, huge and a welcome.
homebirthing's Avatar homebirthing 12:09 AM 04-02-2008
I can completely see the cord accident thing with an attempted vaginal birth and why it would be absolutely necessary to have a c-section.
LoisLane's Avatar LoisLane 02:30 AM 04-02-2008
Just wanted to send a welcome and

Also -- I wanted to add a : to what the PP said about making sure the U/S is read correctly -- my mono-di girls had a very thin membrane that many U/S techs missed at first as they were looking around (and they knew it was there -- just couldn't find it). I don't mean to imply that the diagnosis is wrong, of course, but just make sure it is right so you can educate yourself and inform yourself and plan with your DP how to help keep those babes safe, whatever it takes.

Good luck and congrats on your babes!
rachelm2's Avatar rachelm2 06:32 AM 04-02-2008
Whoa, this forum platform is weird. It would seem that I can't send a reply to individual messages, just to the whole thread?

To everyone - thanks for the warm welcome!

In response to vanauken:
Quote:
First off, know that the survival rates that you'll find on the web - the "only 50% of monoamniotic twins survive" just aren't true anymore.
Thank you. We were diagnosed at a high-risk maternal-fetal medicine center (which I had been sent to because of the abnormal quad screen results) and this was one thing the doctor told us. He emphasized that the situation is to be handled seriously, but to ignore all the numbers on the web. When the doctor heard that my husband and I are both scientists, he printed off some recent journal articles for us to read which have more realistic numbers. The more realistic survival levels are indeed higher, but not quite high enough for me to be entirely calm about this.

Quote:
Here's the problem though: the proper treatment plan is HARD.
The treatment plan you describe is roughly consistent with what this doctor outlined, except he suggested hospitalization a bit earlier (26 weeks). We haven't had our first "official" consultation with him - he was just pulled in at random to talk to us because he was the first available high risk specialist - so I haven't had a chance to ask all my questions, and likely won't until next week. Were you actually on bedrest during the whole hospital stay, or was there some kind of monitoring with telemetry that allowed you to move around a bit?

Quote:
even if it's a medicalized pregnancy and birth, once that's over, it's over, and you can go completely back to your AP parenting style.
We are looking forward to that!

Quote:
Misdiagnosis of monoamniotic twins is incredibly high. It's easy to miss the amniotic barrier. Make sure you get a second opinion, from a maternal-fetal specialist, on a high-resolution ultrasound machine (normal ultrasounds can miss the membrane).
Unfortunately, this was a high-resolution ultrasound machine used for genetic ultrasounds (looking for particular markers indicating genetic problems) and the diagnosis was made by a maternal-fetal medicine specialist. He also brought in two others in the practice without telling them what he suspected and had them look - they independently said they looked monoamniotic. In fact, when we first started scanning, the babies were practically hugging, and the original tech was trying to figure out if they were conjoined or not. After a short while they started moving quite independently so it was clear that they are not conjoined, but I think there is no doubt of the monoamniotic diagnosis. Nobody saw a membrane, the twins were all tangled up at times, and the cords are already somewhat tangled near the site where they attach to the placenta (which makes me nervous...). They told me that not seeing a membrane and the tangled cords are both diagnostic criteria, and while it's possible to miss a membrane, the tangled cords make the diagnosis definite.

As hard as the later treatment will be, I'm experiencing considerably anxiety in this "sit around and wait" phase. The placenta is anterior, so I'm still having trouble feeling fetal movement sometimes unless one of them is poking me off to the bottom / side / top of the uterus, and sometimes they go many hours without doing that, which is nerve-wracking. How early were you diagnosed? How did you deal with the time before going into the hospital? I feel that as much as it will be hard to be away from my family for that long, at least I will feel more secure that if something happens, they'll catch it in time to do something.

Anyhow, I am trying to stay busy now. I have a full-time job (which does not require much physical activity, thank goodness), the kids, and various other things that take up time. i find I am capable of worrying about the babies while doing all of these things, though.

Thanks, again for your long and thorough response. I'm sure you have plenty to do, between your older children and premature twins!

Take care,
Rachel
rachelm2's Avatar rachelm2 06:36 AM 04-02-2008
One more thing, sorry - at an early u/s (for dating purposes - I was sure I had ovulated a week late compared to what one would expect given my LMP, and we wanted to confirm my EDD) they saw two yolk sacs and one baby. They said this was a sign of a vanishing twin, who apparently was just hiding. I just read on monoamniotic.org that two yolk sacs *almost* always means two amniotic sacs. So now I am a bit confused, but I don't see how we can ignore the cords being somewhat tangled already, so I guess I am just an exception to the rule?
*Lindsey*'s Avatar *Lindsey* 11:44 AM 04-02-2008
Just wanted to say welcome and .
cjcolorado's Avatar cjcolorado 12:20 PM 04-02-2008
Welcome and !
LoisLane's Avatar LoisLane 12:45 PM 04-02-2008
Quote:
Originally Posted by rachelm2 View Post
One more thing, sorry - at an early u/s (for dating purposes - I was sure I had ovulated a week late compared to what one would expect given my LMP, and we wanted to confirm my EDD) they saw two yolk sacs and one baby. They said this was a sign of a vanishing twin, who apparently was just hiding. I just read on monoamniotic.org that two yolk sacs *almost* always means two amniotic sacs. So now I am a bit confused, but I don't see how we can ignore the cords being somewhat tangled already, so I guess I am just an exception to the rule?
Could it be that there HAD been two sacs (either di-di MZ babes or DZ) and one vanished, and THEN later the remaining embryo split (between days eight and twelve, right? Don't di-di twins split between days 0-4, mono-di between 4-8, mo-mo twins between 8-12 and conjoined after day 12? I used to know that kind of thing!) When did you have your early u/s? It would be interesting if it was BEFORE day 12 and they split after... I mean, interesting for me, who is fascinated with how twins come to be. Hard and scary for you at the moment, and hopefully interesting in about six months!

Good luck, mama. It sounds like you are in good hands.
tikva18's Avatar tikva18 12:52 PM 04-02-2008
First off, congratulations! twins are an exciting world. Mine are fraternal, so i can't speak about the concerns about TTTS or chord tangling, but when i found out I was expecting twins my doctor told me that this is the time for davening.

Quote:
Originally Posted by rachelm2 View Post
One more thing, sorry - at an early u/s (for dating purposes - I was sure I had ovulated a week late compared to what one would expect given my LMP, and we wanted to confirm my EDD) they saw two yolk sacs and one baby. They said this was a sign of a vanishing twin, who apparently was just hiding. I just read on monoamniotic.org that two yolk sacs *almost* always means two amniotic sacs. So now I am a bit confused, but I don't see how we can ignore the cords being somewhat tangled already, so I guess I am just an exception to the rule?
Maybe it could have been that you were expecting triplets - with one yolk sac being mono twins...but this is kind of out of my territory of knowledge.
vanauken's Avatar vanauken 01:37 PM 04-02-2008
Quote:
Originally Posted by rachelm2 View Post
The more realistic survival levels are indeed higher, but not quite high enough for me to be entirely calm about this.
No, not calm. I'll agree with that! But hopeful. You can be hopeful.

Quote:
Originally Posted by rachelm2 View Post
The treatment plan you describe is roughly consistent with what this doctor outlined, except he suggested hospitalization a bit earlier (26 weeks). We haven't had our first "official" consultation with him - he was just pulled in at random to talk to us because he was the first available high risk specialist - so I haven't had a chance to ask all my questions, and likely won't until next week. Were you actually on bedrest during the whole hospital stay, or was there some kind of monitoring with telemetry that allowed you to move around a bit?
Yes, we went in at 28 weeks just because it made the stay that much shorter. It was a bit of a risk, and I wouldn't have done it if I didn't have two other children at home. But I did, and it was what we felt was right at the time.

I wasn't on "bedrest" technically, because they weren't worried about premature labor. So I didn't have to lie flat on my back the whole time. I got bathroom breaks (amazing how nice it is to get up to go to the bathroom when you've been sitting down all day). But I did have to stay on the monitors. So I could move around as much as I wanted - so long as that movement didn't knock the babies off of the monitors. After a day or two, the nurses stopped coming in to fix the monitors, because I figured out how to do it myself!




Quote:
Originally Posted by rachelm2 View Post
As hard as the later treatment will be, I'm experiencing considerably anxiety in this "sit around and wait" phase. The placenta is anterior, so I'm still having trouble feeling fetal movement sometimes unless one of them is poking me off to the bottom / side / top of the uterus, and sometimes they go many hours without doing that, which is nerve-wracking. How early were you diagnosed? How did you deal with the time before going into the hospital? I feel that as much as it will be hard to be away from my family for that long, at least I will feel more secure that if something happens, they'll catch it in time to do something.
Huh. I had an anterior placenta too. I'd been wondering, till the ultrasound (which I had at about 20 weeks) why I wasn't feeling the baby move much. Trust me, you'll be able to feel them when they get bigger! My girls had regular parties in there! (I felt that between the anterior placenta (which means they almost didn't implant) and the monoamniotic bit (they didn't decide they wanted to be two people till over a week past conception) that God must have REALLY WANTED my girls to be here. So many odds stacked against it, you know?)

Um, yeah, the sitting around and waiting part is hard. I dealt with it by praying a lot. I don't know if you're religious, but in my faith, we're told to pray instead of worrying. Boy did I get a crash course in that! But it was the only thing that helped. And it really did help. So that's what I did.

You can only do what's put in front of you to do. So right now, eat well, rest when you can, take care of your other kids and your work, and you'll be doing what's best for the twins. You can also work on figuring out who is going to take care of them (though if you're working full-time, maybe you already have child care arrangements? That'll make it easier). See if you can arrange for people to take your kids to the hospital to visit you. My kids came almost every day, and it made a big difference for all of us. Tour the NICU, so you know what to expect there. Start buying books and magazines for your stay. My favorite thing, it turned out, was to listen to audio books on cd (on my laptop) while I cross-stitched or crocheted. Can you arrange to maybe telecommute from the hospital? That'd help the time pass! (Find out about internet arrangements at your hospital. I didn't manage to get connected till the end of my stay.)

Anyway, I hope that helps a little.

Oh, and buy baby lotion. You can use it instead of the ultrasound gel under the monitors, and it'll make the skin on your huge belly nice and soft. (But don't use any fancy lotions that might have acidic ingredients - I did that and burned a pretty circle on my skin, yipes!)
HopesMom's Avatar HopesMom 01:38 PM 04-02-2008
Quote:
Originally Posted by rachelm2 View Post
Whoa, this forum platform is weird. It would seem that I can't send a reply to individual messages, just to the whole thread?

l
Rachel,
You are right, there is no way for you to reply to and individual message here, but using the quote feature allows you to respond individually. As you did. I know it is a different format from what you are used to. But I was hoping that the info and support you got here would be worth it.
I see that you've got some good stuff already.

Hope you are well, you've been on my mind!
4Marmalade's Avatar 4Marmalade 02:05 PM 04-02-2008
Welcome and congratulations! I am pregnant wth fraternal twins so don't have much advice about your specific situation but just wanted to mention a book that might help you with your nursing concerns.

"Mothering Multiples" by Karen Kerkhoff Gromada is LLL's book on breastfeeding and caring for multiples. I have read through it and it looks to be pretty helpful in getting you past some of the hurdles you might experience. I also nursed my older two dc's and it is very important to me to be able to nurse these two new babies so I am trying to arm myself with some good material and support systems.

Good luck and all the best with your pregnancy.
rachelm2's Avatar rachelm2 06:28 PM 04-02-2008
A few responses here (and as before, thanks again for the warm welcome):

LoisLane:
Quote:
Could it be that there HAD been two sacs (either di-di MZ babes or DZ) and one vanished, and THEN later the remaining embryo split
It was too late for that - 7 weeks according to my true ovulation date, so ~5 weeks post-conception.

tikva18: Thank you. I quite agree about it being time to daven... I also just posed my question about the extra yolk sac to my husband, and he came up with the same guess you did about another baby that didn't make it. We're going to ask the high-risk specialists about it, though it sounds like most likely we'll never have a real explanation. BTW - I'm NOT looking forward to Shavuot in the hospital!

vanauken: Thanks for the info about what your monitoring entailed. At least getting to be up and about a little bit will be nice.

We have two older children, which is why I feel such anxiety about going in at 26 weeks, but we live only a mile from this major medical center where I will be hospitalized, so it's not terrible. My husband plans to bring the kids nearly every day, which should be a huge help in keeping them from getting too lonely. Plus I'll have a webcam, so I can say goodnight to them before they go to sleep. The girls are 4 1/2 and nearly 7, so it's not as bad as being away when you have toddlers who can't be reasoned with about why you are away. I just keep thinking of things like my older daughter's birthday, which is ~2 weeks after I will go into the hospital, and a major religious holiday we have coming up a few days after that. Being in the hospital during those things is going to really stink.

We do what we have to do, though.

I am trying to do the practical things, as you say, being careful to eat and drink and sleep, and wrap up things at work. My girls are in school (1st grade and preschool) and they go to camp in the summer, but there are gaps at inconvenient times, e.g. the last two weeks of June which is right when the babies are likely to be born! So, we are trying to work on these things. We are fortunate to have both of our families nearby - though my in-laws are busy since they are expecting four grandchildren this summer! - and a large, supportive religious community. We plan on asking to tour the NICU and talk with an LC before the babies are born, besides all the reading I plan to do about nursing preemie twins. And if the hospital doesn't have wireless internet, I plan on buying a cellular card so I can connect using the cell phone network. I am totally capable of working if I have my laptop + an internet connection. I don't want to 100% count on it since who knows what will happen with the babies maybe needing to be born early, so I'm trying to wrap up projects before then, but if I get the time to work, I will use it to keep myself occupied and earn myself some more time to stay home after the babies are born.

Thanks again, so much, for sharing your experience with me.

Mama to one: Thanks for the book recommendation. I've gotten a few recs for that one, so I'll have to get it for some "light reading" while I'm in the hospital.
OGirlieMama's Avatar OGirlieMama 12:12 AM 04-03-2008
I'll throw out a plug for MDC's NICU/Preemie Parenting forum (it's a sub-group of the Life With a Babe forum). The ladies there are as awesome as the ladies here, and there's plenty of overlap, as you might imagine.

I'll also recommend a couple of preemie books:

http://www.amazon.com/Parenting-Your..._sim_b_title_4

http://www.amazon.com/Preemies-Essen...7188685&sr=8-2 (this one is at a super-bargain price right now!)

Good luck with your pregnancy. I hope we get many positive updates!
sivan's Avatar sivan 09:38 PM 04-03-2008
Hi! B'shaah tova on your twins. I know how scary MO/MO twins can be, and will daven that all goes well with yours. It sounds like medical treatment and prevention for MO's has come so far, b"h we live in 2008! I wanted to add, as well, that I know a few pair of multiples that were micropreemies and are doing AMAZING now. Hard first year, but now are completely normal and adjusted for their age. So even if the delivery is early, god willing all will be great, even if the road is harder than most. I hope you can have internet, it'll be a great resource! Also, do you mind if I ask where you are? What state, i mean. I have some preemie clothes for my twin boys, and if yours end up being boys i'd be happy to send them along
rachelm2's Avatar rachelm2 05:44 AM 04-04-2008
Hi Shana - Thanks for the welcome and for davening for us. We already know the twins are girls, but I appreciate the offer.
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