been for medical apt today regarding my neuro condition and high risk preg.

[fidgets mammy]

well as u all know im expecting identical twin girls.

im under the twin consultant at the hospital but i had an apt today as i have a neuro condition called myasthenia gravis-it is farely rare, but basically is a condition that affects yr muscles due to messages not being passed to yr muscles through yr nerves in yr brain. it causes muscle fatigue, sometimes limited use of arms legs neck muscles, breathing muscles, swallowing, slurred speech, double vision and drooping of the facial muscle.
sounds awful i know but i manage mine well and am in remission most of the time. stress and infection trigger it, and when it does affect me i suffer with the double vision, and arms and legs and neck issues.

anyway in pregnancy it usually settles which it has and thank god i have not even needed to take my minimum dose of medication.

but it can affect you during labour which is another reasn i am having a section.

it can also affect the babies when they are born but only temporary. it can affect their sucking ability and make them lethargic.

so today i was told that because of these risks i should be under the medical teams care not the other consultant as they can care for me more during pregnancy and birth. they said they will inform the paedritition of my case and that they will be present at birth and will take the babies to special care. he also told me that even tho they are identical they would like me to go to 37wks not 36 to 37. and that even if born at 37 they will still go to special care to observe them due to my condition.

as much as i am grateful i will recieve better care and feel i am in better hands, the fact that they will DEF go to special care upset me.

i knew that this would probably be the case, but knowing it is reality.

he said it may only be for a few hrs or a couple of days.

im a big softy at heart and although i put on a brave face for others i am scared of the incubaters and wires.

im pleased i know for sure now so i can get my head round it though.

if anyone has any advice about how to deal with special care i would really appreciatte it, or even just some reassurance.

he did say he is impressed with how well im doing considering im carrying twins with a neuro condition. so well done me!!

 

[fidgets mammy]

anyone???

 

[Kasal]

Aww try not to worry, glad that youre well at the moment and it sounds like they are only doing it to cover their own backs and not take any risks!

As for going to 37 weeks that must be to get them that bit bigger which is all in the babies favour im guessing!!!

chin up fidg!! x

 

[fidgets mammy]

im a stickler for being in control and i think its getting to me that i wont be. yet i knew this was likely. but atleast i know now and can prepare. as long as these girls stay in long enough to thrive im happy.

ive put on 24lbs by my 24th wk so im happy with that as that is the recommended amount apparently in order to help prevent very early labour or low weights.

i suppose im a complex case for them. keeps them busy eh.

 

[xxxemsxxx]

Hi Hun, I don't have any experience of special care, but I would ask to have a look around the special care unit before you have the girls and that way you know what it looks like and what to expect if you need to visit your girls there.

Hope everything goes well and any stay is short, sounds like you are being well looked after. xx

 

[arj]

Hopefully they'll see how well your babies are doing and barely need to put them in care. You seem to be doing everything right and if you do make it to 37 weeks then that is 'term' and babies would have stopped developing and would be totally fine. FX!

 

[lizziedripping]

Hey hun, try not to fret. If you do make 37wks, even with the added issue of your condition it's unlikely they'll hang onto the girls in special care for more than a few hrs (24 at most). You're probably imagining the worst, but in the end it'll all be ok and not as bad as you're anticipating.

Special care isn't the same as intensive care, and is a room with cots and babies who need some additional checks. I did NiCU for 17wks with Evie and so dreaded it when they took one of the twins to special care for an hr because he had some minor breathing issues at birth. It wasn't anything like my experience with her and I needn't have worried. Whole different ball game with full term healthy chunks

Focus on how well your girls are growing, and how healthy you are at the moment. Everything's gonna be fine chicken

 

[fidgets mammy]

thanks girls.

i am coming round to the idea now that it is 99.9% likely.

anything that will keep my little girls healthy.

the doctor i spoke to also thinks this condition flared up in my last pregnancy as i only got diagnosed when finn was 1 and thats why i ended up having a section. finn was fine after birth so fingers crossed.

 

[Deethehippy]

I can only sympathise
I suffer with a neurological condition (though not as bad as yours i dont think!) called Miigaine associated vertigo, it's related to migraine but you don't necesarily get headaches but severe vertigo instead.
I feel off balance like i am on a boat 24/7 though some days/some times are worse or better. Diet helps mine a bit but lots of things such as hormones make it worse!
I have been very dizzy since my BFP and it made sense when i realised it was twins. There are some meds that can help me but i can't use them whilst pregnant and i wouldn't want to.

Anyway i really hope your condition stays in remission during your pregnancy and that you have a birth that goes smoothly too

 

[fidgets mammy]

Thanks dee, hopefully ill stay healthy.

Ive a scan in the morning so ill find out how the girls are doing.
Hopefully my condition wont affect them too much when theyre born, im just so pleased ice managed to get this far with them as i was already classed as high risk before we knew it was twins.
The doctors call me a complex case. Ha ha-keeps them busy i suppose. I look totally fine tho so i dont thonk people really understand whats wrong with me. Its as tho if u have a "condition" u should look different when thats not the case at all. Im qiute stubborn so my hubby knows im serious if i complain about it as ususlly i just get on with it.

 

[labmommy]

Good luck on your scan! I hope everything looks good. It's hard when you like to have control of things. I'm the same way. As you said, the only thing you can do now it be ultra prepared and armed with info!

 

[Deethehippy]

Good luck with your scan

 

[fidgets mammy]

hi!! scan was fine. girls are measuring very good!!! one is roughly 2lb 2oz and other is 2lb 6oz. they are now nearing the 70th centile on the growth chart. and they have super long legs-one measuring a wk ahead and the other 2 wks ahead. the sonographer even commented on the their legs-hubby is 6ft 4 tho!!

so im pleased their doing well. both transverse in opposite directions with one curled around the other.