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Update from Philly

Sep 23, 2011 - 3 comments

My internet connection is awful so this will be short.  Basically, we do not have TTTS- our babies are the same size- weight the same- their hearts are fine- they do not have the usual TTTS symptoms- we do not fit the pattern.  Also the way TTTS babies connect to the placenta- well ours are switched and that is unusual.  The 'smaller' baby has a direct connection- the 'bigger' baby goes through the membrane and then into the placenta- which is opposite.  The biggest issue is the amniotic fluid variance- one has iver 11 cm and the other had a pocket of 1.8 cm.  Both are still moving but the smaller sac baby is being squished up against the palcenta but the bigger liquid sac.  Also my cervix is starting the shorten from the extra weight.  

SO- they think either I was exposed to a virus at some point that settled in the 'little' babies bladder and kidney area or that I have a very rare form of IUGR (interuterine growth restriction type 3) but we do not really fit the symptoms for that either.  I told the dr we wanted to give him a challenge!

No surgery for us!  They are thinking an amnioreduction is the way to go- like an amniocentisis- but they drain off more liquid- like a couple of liters.  My dr at home did not recommend this for TTTS- but we do not have TTTS- so I do not know.  I am praying we are making the right choice.  I do trust the doctors at Chop- they see hundreds of theses cases.  I can not say enough good things about CHOP. I do not want to go into early labor or have the babies in cardiac distress by not doing something. Also they will be able to look at the amniotic fluid and tell if I was exposed to a virus.  I do want to do something to minimize long term negative consequesnces,

Very confused, tired and anxious.  I am thankful for the mercy God has shown us.  I am thankful I still have both girls.  I am thankful for the technology and wisdom to help us.  I still have faith and believe in miracles!

Hope good things are happening in your world and thank you for caring about what is happening in mine! I can't wait until I have a faster internet connection so i can get caught up with what is going on with everyone.

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317019 tn?1532969186
by waitn838, Sep 23, 2011
i love the doctors at CHOP.....they fixed a rare birth defect for my son and caught my heart....a friend of mine has a baby at CHOP right now that underwent life saving surgery and they requested it be done at CHOP....their son is getting better every day

im sending you lots of good does sound like an amnio reduction is the way to go....dont be surprised if they have to repeat doc told me some women have to get multiple reductions but you will still be watched super close im sure

my babies are different weights/size and have different levels of fluid....the fluid has not dopped below 2.0 yet (hoping it never does) and my discordance has not gone over 20% so im not officially TTTS but so close

hang in there....hopefully you get some answers and this stress is in teh past as your prepare for your little miracles

1351078 tn?1416316746
by retta483, Sep 23, 2011
Praying for you still and the girls  xx

Avatar universal
by Kricket212, Sep 23, 2011
So happy to hear you dont have TTTS.  I am sure you will be able to tackle anything else that you mentioned.  It sounds like you are all fighters.  Hang in there!!! We are all praying for you.

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