update on why i have been mia +Opinions wanted - Mothering Forums

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#1 of 13 Old 11-29-2012, 12:36 PM - Thread Starter
 
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I have been mia a while, but wanted to update everyone; also i am seeking opinions from.other like.minded.mamas about gd in my specific situation. This will be long---fair warning. I am 29+4 today.

I was diagnosed.with ttts in early november. I.ended up being admitted and having two amnioreductions as i.was GIANT with fluid and.couldn't breathe and baby a had abnormal.doppler readings. After the second amnio, everything stabilized. No.more.bad dopplers, fluid improved on the olig baby and was slightly high.on poly baby. I attribute the stabilization to lots.of.rest and most importantly to.protein shakes. Early.on this pregnancy i.consulted with dr. DeLia, who.is a ttts expert and invented the laser surgery, and he advised the protein.shakes. they kept.me.here.in.the hospital.for.frequent.monitoring and rest. After three weeks nothing had changed and they were.considering.discharging me.....(apparently i surprised everyone by my.improvement/stabilization ; nobody expected.me.tk.get to 28weeks...i.showed them!)

The bpp that day (this past monday), we noticed that the separating membrane was gone (well, not gone, but broken.and no.longer keeping them.separate). My mono-di twins are.now.mono-mono, so i am 100%here.until delivery, which they tell me.will be @32w.due to.risk.of.cord.entanglement. 100%c-section. 3x daily monitoring+daily bpps.

That is 2 1/2 weeks away. At the mostnrecent growth scan, they were around 2 1/2 lbs each...about average.

Then same day they turned momo, i was diagnosed with gd. Immediately my menu was changed (my breakfast came and.it was a bowl of cereal and milk. Period. )i.raised holy hell and got it changed back so.i.can pick my own food again.

Here are my.points:
I.need.to grow.these babies. They will be preemies. Limiting my.food seems.counterproductive.
2. I have not been allowedany exercise in a month. My body is not used to not walking.
3.i do not eatv"meals".... .i graze all.day and.try and.focus.on.proteins. the.food.choices here.suck......i.do.not.wish.for.them.to.be.restricted further
4. I do not believe that overloading a body with an insane amount of glucose at 1 time is it true indicator of my body's ability to process the sugar that I eating, especially.considering.this.completely unnatural.environment i.am in.

5. The main.problem.with gd is.big babies and c sections. I want big babies. They are average.size now for.their age at 2 1/2 lbs. I.am.100% having a.section. the.other.problems they are trying.to.scsre.me.with arw.normal.problems.for.preemies anyway (respiratory/temp..regulation

6. I.would.ju just shut up and let them test my sugar after eating but it's all linked together in a computer and there would be no hiding from it. My grazing would show higher.#s and then they would want to intervene even more

6.
which it is not I which it is not I think there is less than is less than 3 weeks left ho how much damage could be done in 3 weeks
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#2 of 13 Old 11-29-2012, 12:42 PM - Thread Starter
 
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Sorry about weirdo.typing.....i am.on a phone and.it. is being weird. I have.other points as well, but that.is.enough for.now. they are putting the.pressure.on.me and.i.do.not.like.it. i.honestly believe.that this.diagnosis.is.incorrect....and.even.if.it.were.correct, i.don't.think.it.would.matter.given.the.situation, which.is basically really.really unusual. Membranes.don-t just break. The ttts was nervewracking.enough....but now.i.have.to.worry about their.cords. and.fjghting.with everyone.about the gd thing. Dr. Delia (the ttts dr)agrees with me too....so.i have aome backup...but.not here...i found.some. Articles that back up what I think
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#3 of 13 Old 11-29-2012, 02:40 PM
 
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What an experience!  Having been through all that I'd say you're remarkably calm and thoughtful.  Well done growing those babes!

 

Now, granted that I'm an internet stranger, and not a doctor:

 

You've got some real, known concerns and some questionable ones.  Real - TTTS and cord entanglement.  Being in the hospital probably makes sense.  So does an early c/s.  I might beg for 33 or 34 weeks, but who knows.  Those would be tough calls.  Possible issues, lack of exercise and stress - not walking would drive me craxxxy.  But resting is for a good cause.  However you can manage these creatively, do it.  Bed exercises with a monitoring belt?  Scented candles?  Something wonderfully distracting like a good, trashy book series?  Your mindset and overall wellbeing is important, do what you can!

 

GD.  Well.  Were you diagnosed with the 1 hr test?  That is notoriously inaccurate.  I failed it too, and passed the three hour.  The evidence on the harms of GD is schetchy, and you point out a lot of the problems yourself.  But really, NO ONE should be restricting your protein intake, no matter what your GD diagnosis.  Is the hospital kitchen really equipped to provide good diabetic meals?  That's heavy on the protein and veggies, light on the complex carbs and sugars.  Grazing should be great.  Eating well is really important.  Can you get some good food in from the outside?

 

You're doing a fantastic job momma!!!  Almost there!  We're all with you.  Come vent whenever you need.  Lots of good thought!  thumb.gif
 


Mom to : Belle and Izzy
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#4 of 13 Old 11-29-2012, 02:43 PM
 
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I think regular blood testing would be the first step toward figuring out your blood sugar.  It would be good to know how your body is reacting to what you eat and when, which is what regular testing would do.  If your blood levels are dangerously elevated on your normal diet, that's not a good thing.  And you can understand better what modifications you need to make to help your babies gain healthy weight.  You do not want preemies who have grown on high sugar amounts, because their bodies will not be able to continue producing those elevated sugars and they will crash.  Also, how can they confirm that the membrane has actually disappeared and just wasn't visible due to some positioning or equipment or whatever?  I've never heard of a membrane rupturing like that.  But I've heard plenty of Ultrasounds that missed something or were misinterpreted.  There is a chance that they are wrong and things may yet change again.  Which is all the more reason to figure out the best way to support your body and feed it well.  Proteins are critical, so are good healthy green and other colored vegetables.  Keep fruit to a minimum, avoid juice.  Fats from whole foods should be increased, while fats from junk should be avoided.  Try to choose foods which are as close to unprocessed as possible, which may be very difficult in your situation.   If they insisted on feeding me inappropriate foods or limiting my calories, I'd probably have family sneak me in raw vegetables, and whole and unprocessed foods.  I'm not advising you to do that, just know that that would be my choice.  I have some tricky diet situations myself, so I'm pretty determined to supply myself with the foods that I can handle and avoid anything I can't. :)  ETA to clarify:  I don't doubt it is possible the membrane ruptured, just that it is much, much rarer occurrence than an incorrect Ultrasound scan.  


Mom to eight!!  Our twin girls arrived 3-3-2011.

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#5 of 13 Old 11-29-2012, 03:36 PM - Thread Starter
 
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The membrane is really really gone. It.is.all.kind of.bunched up.next to baby a. Baby a also.had.murky fluid (maybe.b/c it was low.and.concentrated???) and.it.was.easy to.see the membrane b/c of the obvious color difference....and it is all one color.now. i have had three bpps since then...and.sadly, there is.no.membrane . Today they were batting around an umbilical.cord, which would.be.cute if.it weren't indicative.of.the situation. I.would.be questioning.it.also, because.i.know.how.weird.and.unusual.it.is (at this.point.i.need.to.invest in.some.lottery tickets, because it.seems.like.this.entire.pregnancy.has been.a.series.of.unusual.things. First.mono-di, then ttts , than.this.

I.have not.talked.to.the dr about the actual.plan. Someone.else.in.his.practice.told.me.delivery at 32. .i.don't know.if.they are.willing.to.stretch.it.if.babies.look
good....and.truthfully.i.am.not.sure.if.i.want them.to.either (because.of.the above mentioned idea that all these not.common.things.keep.happening--)luckily.the ttts was.seemingly.pretty.mild,.so.there is that, although.there was.still.all.the worry.

About the gd----i.am.going.to.see.if.i.can get dh.to.buy me a tester, so.j.can manage.it.myself. this may be a.product of.having basicslly zero.autonomy.since being here.i.just.don't.want them.to.be.limiting.my.choices.further....i.think.i.would be willing.if.it.were.off.their radar. .if.i.were.not.locked.up.in thenhospital i.would have a world.of.choices. i.don't have that luxury here.

Thanks.for.answering.and.reading
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#6 of 13 Old 11-29-2012, 03:43 PM - Thread Starter
 
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Oh---about the.membrane again----i.had two.amnioreductions almost four weeks.ago. He did not go.anywhere.near.the.membrane. BUT, there was some.separation.of the chorionic(???)membrane (up.against my.uterus)...it was.a.little.separation, nothing.too.horrible, but they were watching.it.(apparently.it.raises the risk.of.ptl). It.also.was.nowhere near the intertwin.membrane, but maybe it.somehow.had.something.to.do.with.it???? The dr doesn't have a.good.explanation.either.

I.have heard.of.the.membrane.breaking.with.accidental.poking, but.it.is.strange that he was.nowhere.near.it.and.also.that.it.was.almost.a.month ago. But.maybe having.poked.around.in.there at all changed something that made.it.more.likely.tk.break? It.makes.no.sense
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#7 of 13 Old 11-29-2012, 08:58 PM
 
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It is so unusual I had to go looking.  Apparently you are in the lucky less than 2% of all complicated mono pregnancies.  That is such a small percent!  Wow.  Prayers and good thoughts for the rest of the pregnancy to stay on course.  I hear you about the autonomy thing.  Totally.  You can get a glucometer just about anywhere these days.   


Mom to eight!!  Our twin girls arrived 3-3-2011.

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#8 of 13 Old 11-29-2012, 09:02 PM
 
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Hey mama,

 

First off, sending you a giant (((hug))). This is a crazy, stressful time. My heart goes out to you since very few people understand what kind of decisions you are being forced to consider and making the final call to do one thing or another puts a ridiculous amount of pressure on you.

 

I had mono-mono twins from the get-go, so I completely understand that aspect of your pregnancy. My best advice for you is to follow your gut. You know your body, and despite what many mainstream individuals/medicine may believe, I honestly think that a mother's intuition is real. No one can really tell you what to choose, and only you can make the choice and be able to accept what may come once you do. I felt the weight of the world on my shoulders from the moment I found out I was carrying mono/mono twins and for several months after my babies were born. These moments can be excruciating.

 

Is your care provider open to discussion about delivery? You need to decide what you think is best for you, your babies and your family. I had a great perinatalogist that strongly endorsed that I admit for in-patient monitoring at the "recommended" time of 28 weeks but also respected our choice to deviate from the typical path. Without going into details about the how and why of our decision, I didn't admit until 32 weeks. I opted for daily out-patient monitoring until that point.

 

I feel for you. Being in the hospital was brutal for me. I don't know if you have other children, but I did. That alone made it awful. I honestly think that when you (drs) are looking to find something, eventually you (they) will - so monitoring 3x/day really opens up that window. My personal feeling is that putting a mama in that environment puts stress on her (mind, body and spirit) - and clearly that affects the babies as well. Let alone the stress of constant dopplers and u/s puts on the babes.

 

With that said, cord entanglement is a real issue and a serious concern. DH and I were shown photos of cords that were twisted into crazy knots at an appointment once. HOWEVER, your littles haven't had months of open swimming time, so it may not be as easy for them to twist around now. I had several u/s techs tell me about mono/di twins that became mono/mono from similar situations such as yours. It is a hard reality to accept.

 

I wish you the best in your journey and the tough decisions that you will need to make. Decide what is best for you and your sweet miracles and fight like crazy for them. For me, I didn't do things by the book, but I also conceded on some things as well. Be strong, and try to shrug off all of the people who give you unsolicited advice and/or scare tactics.

 

Try to breathe, say prayers and send love vibes to your babies. You WILL get through this. I promise you will. It probably won't be without tears, pain, stress and doubt ... but you are strong and resilient.

 

Sending you hugs, smiles and strength.

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#9 of 13 Old 11-30-2012, 07:50 AM
 
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First, big hugs! I hope you get a chance to talk to your doctor soon about all the risks and whatnot around delivery.

As for GD, I would furious about their reaction to that too. Good for you for standing up for yourself and making sure you are getting the protein you need, isn't that what you should be eating on a GD diet anyway? Are you allowed to have food from outside the hospital? I would definitely supplement the crappy food with protein shakes and whatever else from home. If they didn't "allow" it, I too would likely choose to sneak it in. I would talk to your doctor ASAP about GD too, but yeah limiting protein seems about the dumbest thing they could do in your situation!

Good luck growing those babies as big as you can and I hope everything goes well from now on!

Katie trekkie.gif - Married to Mike 06/02/01, Mom to Sydney Anne born 11/21/09 and Alice Maeryn & Oliver Thomas born 04/24/13  hug.gif 

 

 

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#10 of 13 Old 11-30-2012, 11:12 AM
 
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first off hugs

you have gotten some great advice already and your intuition seems really sound.

 

i really think this is a "pick your battles" situation like non other.

 

things in your situation I would work on excepting:

in hospital bed rest,

there may be small things you can do to make it better and some sort of good movement would likely do you very good mentally and physically with the blood sugar, can you ask to talk to OT or PT in the hospital about exercises for bed bound patients, there are some for sure. my DH works with folks who are wheelchair bound recovering from injuries and they do a lot of things to keep their body circulating and their mind calm. he works in a hospital's OT clinic.

 

the C/S,

i hope you can come to a good true peace about this, it is the wonderful birth of your children and work now on how you can make it good for you in the circumstances. maybe go over to the Cesarean forum here and read some of the threads on how to make it a loving experience for mother and baby. i have not had one, but i was really impressed when i took the time to read one of those threads, they are certainly not all the same.

 

Things i would work on adjusting:

 

the GD,

i one hour test is really a horrible picture of real life, you already know that. i personally refused to take the test and got my doc to RX me a daily meter and the strips.  i knew that i had some insulin resistance already and a history of type 2 in my family so took the proactive approach and tested often and learned a ton about my eating and how little routine things could really change my days a lot.

get a meter, take things into your own hands on this one, record your tests and get your doctors to listen to you and let you care for yourself.

protein and lot of little snacks of it are the single best thing you can do here, dont let anyone tell you different, they are idiots if they do. you know exactly what you need, go get it. this i would put my food down more than anything!!!

and yeah as long as you keep your blood sugar reasonably stable the GD is not really that bad of a risk, some would argue with good science behind them that it is, within reason, a normal aspect of pregnancy.

now uncontrolled blood sugar is not good and has been linked to both you and your kids having a higher risk of diabetes in the future, so that should be your motivating factor 

 

birth timing:

i do not know enough about your particular risks of mo/mo and how fast they come one to say much about this. I'm sure you are learning all you can and will be  the best person to make this call.

 

i will say that doctors seem to place too much reliance on the miracles that the NICU can do these days with premies and have seemed to get too relaxed about birthing them. every day gives inside gives your babies a better chance at nearly everything, if i were you i would really educate myself and then make it perfectly clear with the doctors that it was a team effort and that choices would be made as a teem, including you.

and the buck stops with you.

it is their responsibility to explain and convince you of their suggested treatment plan. Be open to hearing it, ask good questions and give them the benefit of the doubt that they in this field  because they love babies too and want the best for yours. but keep in mind they have lawyers breathing down their necks and sadly it affects their judgment.  your motherly intuition is the counter balance to the lawyers.

 

and lastly, hugs again


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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#11 of 13 Old 11-30-2012, 12:49 PM - Thread Starter
 
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Thank you! There are a lot of points i want to.answer, but i may miss some. I let them test my sugar today with a promise from my dr that they.will nOT change my diet. My levels so.far today have been fine, and i have been eating normally.

I am.not truly bed bound---just room bound, which is.super annyoing since at this point i.don't see how confining me is doing anything. I am allowed a wheelchair ride with family once a day and when.they.do.come, i go.away from.this.floor and.walk the halls. It.is verh lovely! I try and walk.around my room, but it.is.not that exciting.to.go.three feet and then have to.turn.around....ad nauseum.


The 32 weeks is pretty standard.for.mono-mono. Max would be 34 (and there may be an.extension.if.i get to.32 and they are still.doing okay). I am comfortable with 32. The bigger they get, the higher the chances are for.cord compression. It just seems like.it has been one weirdo.thing after the other, and i am not willing.to.take any risks.at this.point. Old.me.would.never have been.so.accepting of this (or even a c-section), but new jaded.me wants alive babies at the end. The c-section.is mandatory because their.cords.could be all.jumbled.

The c-section---that is.a.good.idea.to.read about good ones on.here b/c that is freaking.me.out.big time. I have talked to.the nurses a.little bit about thep procedure but i don't really want.to.think about.it.too much either. Old me would have been.completely horrified by the idea.of.32 weekers taken.via c-section....but new.me.is.just pretty excited that.i.got this.far.and the end.is.near. this.entire pregnancy has been so.mentally challenging...even from the beginning

(And...talk.about momma intuition, remember all.my early early freak.out posts about looking for.a.doctor? .everyone thought i.had gone.off my rocker (me included!), but it turned.out that i.really did need the best.doctor.i.could.find.
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#12 of 13 Old 11-30-2012, 06:42 PM
 
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You can do anything for a month. You can do anything for a month. You can do anything for a month. 

 

That would be repeating in my head constantly. If you even have a month, right? Im so sorry you are going through this, but just remember that this will be over soon, and you'll have your babies. 


Holly and David partners.gif

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)

SIDS happens. 

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#13 of 13 Old 12-01-2012, 09:58 PM
 
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(And...talk.about momma intuition, remember all.my early early freak.out posts about looking for.a.doctor? .everyone thought i.had gone.off my rocker (me included!), but it turned.out that i.really did need the best.doctor.i.could.find.

i know, crazy thinking back to the early days of this!!!


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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