confirmed mono-di, but NOT high risk - Mothering Forums

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#1 of 26 Old 08-26-2012, 05:53 AM - Thread Starter
 
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I need to find yet another provider. It has been confirmed that they are mono-di and the cnm at the new practice was very rude and very condescending and she said, " michelle, you are ONLY pregnant with twins. Being being pregnant with twins does NOT make you high risk. Sharing a placenta does NOT make you high risk. You need to trust us and stop reading everything on the internet". So....in addition to that bit of.wisdom, she also told.me i should only gain 20#....and again refuses to send me to a peri. I feel like i.am in dangerous territory, and nobody believes me or.will help (my.insurance.will.let me.go.to.a.peri....it is the peri that will not.see.me.without a referral).

The one positive (kind of)is that i do.have an u/s scheduled for this week to.determine chorioinicity (i am fearful they may cancel since it has now.been officially established) andnthey tell me that all ultrasounds at this.place.(it IS done at an.mfm practice) are.review.by the peri and if an appointment/consult is.needed based on the findings, THEN i will be contacted.. the evil cnm also said that she did not thnnk mono-di.would be enough to.warrant getting a consult now....but i am hoping that either she is.incorrect, or that plus complete previa (oh...did i.mention i am 39. Good old.ama) would be enough to warrant attention. I feeling doubtful though....this whole experience is horrible. Be thankful for.decent doctors if you have them.
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#2 of 26 Old 08-26-2012, 07:09 AM
 
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Ugh, way to totally not address any of your concerns. Do you live in a big city? You may want to check Angie'sList or somewhere for online reviews before signing up with the next doc.


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#3 of 26 Old 08-26-2012, 11:03 AM
 
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Wow there is being over paranoid and there is swinging way tooooo far the other way, your concerns should not be dismissed like that. Good for you for keeping at and getting the team you need.

Mo/di is not the scariest thing in the world, but it does present a handful of new things to watch for and understand. Be your own best teacher and you will be in the best hands.

As for the 20lb crap!? Are you way overweight? Either way that info is really bull and can be really dangerous. Focus most of all on when you put in you, that is more important to track than your weight. But if your babies are outgrowing you, it is clearly a sign that they are tapping your body out and that's not good. You need that extra cushin for the 3rd trimester, when they grow fast and it's hard to get full meals. And of course the 4th trimester when you are the full meals!!!

partners.gif 2twins.gif  So what if I don't fit cleanly into a defined parenting style, my kids don't fit into a personality archetype either!

 
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#4 of 26 Old 08-26-2012, 01:42 PM - Thread Starter
 
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Adorkable---that is exactly it....i do not think.mo-di is the worst thing ever...i think i need to be in the hands of someone capable from the get-go, so that i could.feel confident that should things go wrong, i could trust them to know it asap and act on it properly. Right now, i have yet to come across anyone i trust that much. All this eanting and raving ihave been doing is either completely justified, or i have seriously gone over the deep end...(and i am really starting to let myself believe this)...ànd...if i HAVE gone off the deep end.....i STILL should have the caregivers that can recognize it, and deal.with it PROPERLY...and they have not done that either....
I just need someone else.

Fwiw, i am a little fat, but not enough to justify only 20#s. I am 4'10" and started at 129#. I.am sturdy...and it has always been my normal.weight. i started at the exact same weight with dd and ds and gained 25-30 with each of them. I.knew she was giving me bad info. If she is giving me this bad information on something so easy (??)as weight gain, how can i trust they can deal with more intricate issues involving multiples. Ykwim?
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#5 of 26 Old 08-26-2012, 03:08 PM
 
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i think your thinking really smart.  as for your height and weight, your BMi is exactly what mine was when i got preggo (i was 5' 6" and 171lbs we both have about a 27 BMI. i was told a pound a week with twins from various sources and taking in account for my starting point, it would have been more if i was considered a more normal bmi.

it felt very correct to me. in the end i struggled to gain weight and was only up 31lbs at 36 weeks when i went into labor. i started to  fell it bad at that point, my arms and legs were actually getting thinner and the babies were gaining faster than i was. so i see now (not that i ever doubted it then) how important it is to gain weight in the first half of things.


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#6 of 26 Old 08-26-2012, 03:44 PM
 
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Lilysmama,

If this is any new information for you, Im 5'0 and started at 155 and my OB told me to gain NO LESS than 30 lbs.


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#7 of 26 Old 08-26-2012, 05:07 PM
 
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I could be wrong, but I thought once a woman hit 36 yo, then she was considered at an advanced maternal age and therefore high risk.  IDK, I could be wrong, but I was 35 when I conceived my twins and the dr jokingly told me that I just made it under the bar for high risk due to age.  My twins shared a placenta, but I was never placed in a high risk category because of it.  Though that could be because there was some doubt about that fact.  I was comfortable with my dr though as we was very experienced and he said that he would refer me to a specialist if I wanted one.  It seems to me, with the medical profession, and obstetrics in particular, being so concerned about liability issues they would refer you in a heartbeat wherever you wanted to go.  I mean, what happens if something goes awry and was not properly addressed to due the lack of knowledge and skill of your provider, but could have been prevented if the proper referral was made and REQUESTED by the patient????  Anyway, it sounds like there is a breakdown in the relationship with your provider.  I have changed providers in the past simply because their bedside manner stunk.  Unless you are extremely limited in your options, I see no reason why you shouldn't switch and get the care you believe suits you and you are comfortable with.

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#8 of 26 Old 08-26-2012, 07:30 PM
 
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According to my Ob's practice (who is super natural birth friendly, and a twin mom herself) I am automatically considered "high risk" because Im pregnant with twins. All that really means for me is more frequent appointments after 24 weeks, and the big anatomy scan will be done at a MFM office by a Level 2 technician.


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#9 of 26 Old 08-27-2012, 05:28 AM - Thread Starter
 
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I am sure i have made it perfectly clear that the doctors i have seen thus far do not have a clue about anything related to.multiples.
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#10 of 26 Old 08-27-2012, 03:07 PM
 
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So, find a new new doc. When I called up my MFM doc they ask who referred you and I said I'm referring myself. I said, I heard Dr. Ismail is THE best doc in the area for my condition (nothing wrong with stroking a little ego) and I would like to make an appointment. They asked some more questions, seemed to be scratching their heads, but then made the appointment. Now, he's my doc.

Are you in the US? So, is this other high risk doc the ONLY doc in the area? Keep calling until you have the answer you want. The squeaky wheel gets the oil.

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#11 of 26 Old 08-27-2012, 07:38 PM - Thread Starter
 
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The problem is that there is only one mfm practice in the entire state. They WILL NOT see me without a referral. They will not let me self refer (and i have explained that i am 39, with mono-di twins...and it doesn't matter). The two obs i have seen so far will not refer me. My PCP will not refer me....an ex ob that i called said if i were their patient, they would not refer me.

So i am trying to find an ob that WILL refer.me, but i am doing it blindly since they are just names on a list at this point. I feel.like i am banging my head against the wall....i am super frustrated and worn.out by all.of this (i have asked everyone i can think of for recommendations, but a) i do not know many people that have ob recommendations due to being out of the area or homebirthing b) an ob may be great for a singleton, but know nothing about multiples. (I consulted with a hb midwife today to.see.if she had any ideas.on how i should.proceed or dr. recommendations...and she did not really.have any other recs...she did like one of the obs in my current practice, but i am scheduled for the same nasty cnm next month as both obs are on vacation next month (and i tried.for.the 2-3weeks.from.now csrd.and was denied!)

You are right though...i will try the mfm again tomorrow and throw in the previa. The worst they can.do.is say no...(which they have already done twice, so.i hold out little hope). I am really really hoping and praying that the mfm that reviews my u/s on Thursday decides that whatever he sees warrants a faster consult withhim than @20w. At this point praying feels like it could be more effective than anything else i have tried. I am.doing everything right....and it is just not.working.
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#12 of 26 Old 08-27-2012, 07:48 PM - Thread Starter
 
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I also thought of.something earlier today. There is no real.infertility clinic.in this state. If you want/need ivf, you have to go.to boston. There are drs that do iui, but i bet that we have a lower percentage rate of twinning than other states do. Plus we have a small.population relatively (i am in maine), so reallt.and truly, these doctors have not seen a whole lot of complications of twins just because there are not a whole lot of them to start with...so they probably do believe that twins are twins and not that big of a deal. There probably.are a lot more cases of babies born to.sick.moms and fetal.alcohol.and drugs and all the other high risk things tht mfm deal.with than simple things.like multiple.pregnancy. i think that is totally how the drs are seeing it (the nasty cnm said as much to.me)....i just don't know how to change that perception

(And after all this, i already feel resigned just thinking about fighting for a vaginal birth....asauming the previa.goes.away). This is just not.going.to be a stress free pregnancy).
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#13 of 26 Old 08-28-2012, 09:16 AM
 
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I'm so sorry you're having such a tough time of it. I'm sure you're doing everything you can. I hope I don't sound like I don't think that, I'm just trying to brainstorm ideas with you.

Can you call the MFM's out of state? Go to one of them for the first appointment, get an opinion and then ask for a referrel for your closer MFM. Feel free to make up something if you're anxious about how you were staying with friends locally, but now you'll be living where you live and need care that's closer. Or whatever.

hug.gif I hope you can find a solution soon and find peace in your pregnancy. Good luck.

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#14 of 26 Old 08-28-2012, 10:27 PM
 
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FWIW, all twins in my practice are labeled high risk.  A normal di-di pregnancy might need no more than extra ultrasounds for growth but mono-di twins get bunches more.  I might have mentioned this somewhere else, but they let me squeak through the first half of pregnancy with every 4 week scans until 20 weeks, after that its every 2 weeks to look at fluid levels and every 4 weeks to measure growth.  Some providers/MFMs might even have you do every 2 weeks scans for fluid even in the early 2nd trimester.  There are folks who have developed twin to twin transfusion (TTTS) early and go on to have crazy interventions to try to save both babies...all before 20 weeks.  If they aren't moitoring you, you might never know or have that option.  And, I don't write that to scare you...just to back up your reasoning for wanting a consult before 20 weeks. 

When you phone the MFM are you talking with a receoptionist or a nurse?  Anyway you could ask to talk to the nurse and explain you have concerns about TTTS (even if you don't have it.  It might convince them to consider it and see you sooner)?

 

Good luck!


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#15 of 26 Old 08-29-2012, 11:52 AM - Thread Starter
 
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WELL.....if i get ttts prior to 24 w, we are doomed. That is nice to know, huh? I called the mfm office again, argued with them, again.....finally got a nurse on the phone who told me they do.monthly scans until 24 weeka and there is nothing tk be done prior to then if they get ttts anyway. And yes, still no referral, but it is.not sounding like a referral.would get me anything anyway if standard practice at the mfm is one scan a month until 24 weeks.

Believe me when i say that i am.fully aware of the risks involved. Apparently i am the only one in this entire state. To include the all.knowing specialist. So....what else can.i.do other than move out of state?

Well...i have an u/s (ironically to.determine chorionicity)tomorrow and tbat will be reviewd by one of the mfm doctors and i.will be contacted if there is a reason for concern. I am thinking i am not going to be contacted (the nurse at the mfm also.said that juat b/c they are twins does not make me high risk, regardleas of placenta).

So...i have an appointment with the original ob in another week and then the big a/s 18days from then. I plan to change obs again...and keep all the appointments with the original one b/c he does office scans and a crappy office acan is better than no scan.

Thia warrants a grievance somewhere, but i am.at a loss as to where. I just pray that nothing happens to these babies (that is a given for everyone, but it would be nice to.feel.like there were.competent people.around if something did happen).

Thans for reading and offering me support. This is just ridiculous and absurd and i cannot believe how screwed up it is. I will try to not complain about this anymore as i.juat don't think there is anything to be done and it is a waste.of energy to be so.upset over something i have no.control over anymore.
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#16 of 26 Old 08-29-2012, 02:15 PM
 
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So, how far away is Boston?  whistling.gif


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Adaline love.gif (3/20/10), and Charlie brokenheart.gif (1/26/12- 4/10/12) and our identical  rainbow1284.gif  twins Callie and Wendy (01/04/13)

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#17 of 26 Old 08-29-2012, 03:07 PM - Thread Starter
 
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About 5 hours away

(i am actually going to see what happens tomorrow. I called MFM at Dartmouth Hitchcock in NH earlier and talked to the genetic counselor there about the situation. She is pretty blown away as well. I have some questions to ask the tech tomorrow. It is also her opinion that perhaps once the mfm reviews my scan that i will be hearing from him. She also said i can call her again with anyquestions or concerns(i told her that i am.willing to travel or move if that is what it takes, but that is somewhat impractical....and tomorrow may be the gateway in. I talked to her for a long time and while nothing changed, i am feeling hopeful about tomorrow. Switching told Dartmouth Hitchcock is still.out there as an option...then Boston. Crazy.
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#18 of 26 Old 08-29-2012, 03:21 PM
 
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Woah, that's too far in my opinion.


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Adaline love.gif (3/20/10), and Charlie brokenheart.gif (1/26/12- 4/10/12) and our identical  rainbow1284.gif  twins Callie and Wendy (01/04/13)

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#19 of 26 Old 08-29-2012, 04:41 PM - Thread Starter
 
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I pretty much agree. I am trying fo.find peace with what i can because leaving the state seems nightmarish. I think a decent ob would go a long way to that end though. I have one more to try (after the way the cnm talked to.me i just can't see staying at that practice anyway).The nwxt one is one i saw for IF a few years back (the irony is not lost on me) and i liked him.fine and he has the exact same relationship with the mfm that the current one has (original.ob does not deliver at the hospital with the good nicu, or i would stay with him. He was not rude or disrespectful to me, just a little clueless).
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#20 of 26 Old 08-30-2012, 04:21 AM
 
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Are there any Mothers of Multiples groups in your area?  I would think that the moms there might be a great resource for you in terms of references for OBs that might be more multiple experienced.


I support homebirth that meets the qualifications set forth in the AAP's 2013 policy on homebirth.

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#21 of 26 Old 09-19-2012, 01:39 PM
 
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Quote:
Originally Posted by lilysamsma View Post

WELL.....if i get ttts prior to 24 w, we are doomed. That is nice to know, huh? I called the mfm office again, argued with them, again.....finally got a nurse on the phone who told me they do.monthly scans until 24 weeka and there is nothing tk be done prior to then if they get ttts anyway. And yes, still no referral, but it is.not sounding like a referral.would get me anything anyway if standard practice at the mfm is one scan a month until 24 weeks.

 

 

I would phrase it as "If you have TTTS before 24 weeks and are not aware of it, you are doomed."

 

I agree that you need to figure out a way to find a referral to an MFM specialist who knows what they are doing.

 

One way to finesse this is to arrange for CVS (as opposed to amniocentesis).  Since CVS happens earlier in the pregnancy, you will end up having the diagnostic ultrasounds earlier as well.

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#22 of 26 Old 09-19-2012, 04:44 PM - Thread Starter
 
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Cvs is not something i.would be willing to.do...especially not as a backdoor to see a specialist that i.ought to be able to.see without tricks and subterfuges (all that being said...i have managed to ensure that all is.well to date by using NONINVASIVE tricks and subterfuges). As of this afternoon, i have found an ob.that has acknowledged that mono-di.twins are high risk and is perfectly willing to.work.with the mfm (i have an appointment on.monday for the a/s and also an actual ppointment to.set up a game plan going forward). I am 19 weeks now, i.today.is the first day that i have been able to.breathe a little. Up to this point i have managed to get the babies looked at at least every other week and all has been well thus far (the tricks i was referring to...basically i kept every provider on the hook while i co tinued to.search for one that took me seriously...while not informing them.of.each other. In the end the only "extra" would have been one extra office visit of being weighed and peeing in a cup. I got a very detailed scan at 16 weeks to.officially determine chorionicity (reviewed by mfm, but no correponding appt.). I could.go.on about whay i have done so.far....but even though i am past the window anyway, i am pretty sure i would not have resorted to cvs....too invasive. Travel.out of state, absolutely...cvs with no reason, no.

All.in all, it is insane that i had to.do.all this to.end up with an ob that knows what he is.doing. it saddens me that this.is probably happening.over and women are just believing what they are told and not learning or advocating for themselves (i suppose it is sort of like what women.go through to get the birth they want)
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#23 of 26 Old 09-21-2012, 06:01 PM
 
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wow, really glad to hear you finally found what sounds liek the right doc for you, good going for sticking to this mission to address your needs.


partners.gif 2twins.gif  So what if I don't fit cleanly into a defined parenting style, my kids don't fit into a personality archetype either!

 
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#24 of 26 Old 09-25-2012, 07:23 AM - Thread Starter
 
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Thanks! Yesterday i had my a/s at the mfm office (2 hours away) (girls!) and met with the mfm afterward. He wants me to get scans every other week at the mfm satellite office here (he sees all scans, plus they are set up to skype with him afterward) (vs having the new good ob doing everything) and he said that he would be conveying it all to the new good ob. Everything looks as good as can be so far, which is great news.

It sucks that there are practices that are so very clueless, and i feel bad for the next mono-di twin mom to be that encounters them (and may not be informed), but i tried to inform them.
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#25 of 26 Old 09-25-2012, 09:14 AM
 
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great news, thanks for the update


partners.gif 2twins.gif  So what if I don't fit cleanly into a defined parenting style, my kids don't fit into a personality archetype either!

 
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#26 of 26 Old 09-29-2012, 06:15 PM
 
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Glad to hear things are going well.  Keep on with your regular ultrasounds.  Good luck!

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