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My Appointment:( **UPDATE**


Forum: February 2014 Playroom

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  #1  
September 6th, 2013, 03:36 PM
victoria0294's Avatar Mega Super Mommy
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I wanted to update you all with my appointment today.

The babies do have TTTS, Twin to Twin Transfusion Syndrome. It happens in about 15% of all identical twin pregnancies. What happens is because the babies are sharing a placenta, one baby is getting too much blood flow, and the other isn't getting enough blood flow. The donor (the twin not getting enough) is smaller, and her sac is very small because she doesn't have enough fluid. Today we also couldn't see her bladder (we could see it last week). The recipient (the twin getting too much) is bigger, and has a very large sac. That explains why she's always very active (she has a lot of room to move) and the other one wasn't (she has basically no room to move).

The blood flow on the donor wasn't very good, so we are of course worried about that.

We are going to Philadelphia for an evaluation on Tuesday and I'll most likely have laser surgery to hopefully correct the issue.

I've never been more scared in my life. The thought of losing one or both of the babies, or something being wrong with them when they're born is so scary. I know it's out of my control, and I didn't do anything to cause this, but I hate not knowing what's going to happen.

We would appreciate any prayers.

***UPDATE***
Thank you all SO much for your prayers and support. I wanted to update you all on my appt at CHOP (Children's Hospital of Philadelphia). The appt went well given the situation. They did a 2 hr u/s, a 1 hr echocardiogram on the babies, and we had a few other meetings. All of the drs/nurses have been wonderful!
I've been diagnosed with Stage 3 TTTS (out of 5). This is a very common stage for them to do laser surgery. There is no visible bladder in the smaller baby (because she's not getting enough fluid and her bladder isn't emptying/filling properly). The larger baby's heart has been working extra hard because she has too much fluid. After the surgery, which is scheduled for Thursday morning, I'll have a follow up in a week where the smaller baby's bladder should then be visible, and the larger baby's heart will most likely show signs of improvement and in the majority of cases the heart will be perfectly fine. The larger baby's bladder is also larger right now because of the extra fluid, but again should be just fine after the surgery.
There is no evidence of any brain damage, and they said most moms that do the surgery deliver at 34-35 weeks, which is pretty close to a normal twin delivery so that's very good.

The odds are definitely in out favor- we have an 86% chance that at the end of this we will bring gone 2 healthy babies, and a 94% chance of bringing home one baby.

One concern the dr does have is because of their size difference, she won't know until after the surgery what % of the placenta the smaller baby will have. If it's not enough, then she wouldn't get what she needs and she wouldn't make it.

I am very optimistic about our odds (which I couldn't say a few days ago). We are in very good hands here, and I'm just praying that things continue to look up and everything goes well. I pray I can carry these girls to at least 35 weeks

Again thank you ladies so much, it's so helpful to read all of the supportive words. I will continue to update you all (probably on a new thread instead of updating this one) after my surgery etc...
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Last edited by victoria0294; September 11th, 2013 at 02:10 AM. Reason: UPDATE
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  #2  
September 6th, 2013, 04:11 PM
*Ade*'s Avatar Platinum Supermommy
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Lots of thoughts and prayers!! I don't know first hand, but I know through others how scary and worrisome this is. Please keep us updated on how Tuesday goes!
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  #3  
September 6th, 2013, 04:24 PM
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I can't even begin to imagine. I will be praying heavily for you and the babies. I hope everything gets worked out and BOTH babies are/remain healthy! Let us know how everything goes when you get the chance.
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  #4  
September 6th, 2013, 04:25 PM
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I'll send my thoughts and prayers your way.
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  #5  
September 6th, 2013, 04:25 PM
OscarsPaprika's Avatar Strong proud Army wife ;)
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Oh hun I'm sorry, I will definitely pass the prayers through the churches I work with. I can't imagine your fear but you have a ton of support. Huge hugs and lots of prayers for you and your babies!
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  #6  
September 6th, 2013, 04:27 PM
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*hugs you* my prayers will be with you and your girls honey. You have all my positive thoughts your way.
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  #7  
September 6th, 2013, 04:32 PM
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Praying for you!
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  #8  
September 6th, 2013, 05:02 PM
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Of course I will be praying for you and your babies. It sounds very scary but I'm glad you'll be going somewhere that you can get the appropriate care. You sound calm and determined. Thanks for sharing this with us so we can keep you in our thoughts. Keep up the updates. A big hug for you
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  #9  
September 6th, 2013, 05:13 PM
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Lots of R&R, doctors can do amazing things!! Let us know how tuesday goes, will be thinking of you
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  #10  
September 6th, 2013, 05:32 PM
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Sending prayers your way. Please keep us updated and try not to stress yourself out too much.
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  #11  
September 6th, 2013, 05:40 PM
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Oh hun how scary. I will be praying for you and your girls that the doctors will be able to correct everything
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  #12  
September 6th, 2013, 06:07 PM
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I'm so sorry to hear this! You and the girls will definitely be in my prayers! Please keep us updated.
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  #13  
September 6th, 2013, 06:21 PM
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I'm so sorry! Prayers!
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  #14  
September 6th, 2013, 06:59 PM
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Praying for all of you. I've heard that hospital in Philadelphia is wonderful. Please let us know how your doing.
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  #15  
September 6th, 2013, 07:09 PM
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How scary! I'm do sorry you are going though this. My sister had surgery in the big Children's hospital there, they were amazing. I hope they fix it easily and all goes perfectly.
I'll be h thinking of you and sending hugs!
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  #16  
September 6th, 2013, 07:26 PM
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thinking of you all hope all goes well.
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  #17  
September 6th, 2013, 08:28 PM
melaniek85's Avatar Frankie and Ronin's mommy
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I'm sorry. How scary! You are your little ones are in my thoughts.
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  #18  
September 6th, 2013, 09:05 PM
victoria0294's Avatar Mega Super Mommy
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Thanks everybody, I really appreciate the support.

DH has been looking at hotels, and I've been doing a lot of reading about the surgery. I'm trying really hard not to think "why is this happening to us" and just take this one day at a time. I just hate the waiting and not being able to do anything.

I'll keep you guys posted when we know more.
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  #19  
September 6th, 2013, 11:57 PM
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Sending you love, strength, and tons of prayers. I'm sorry you are having to go through this. Know that we'll all be praying and sending you positive thoughts on Tuesday! Stay strong.
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  #20  
September 7th, 2013, 12:50 AM
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Oh I'm so sorry you're going through this. I'll be hoping an praying for you and your little girls <3
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