March 2017 Moms

Twin to Twin Transfusion Syndrome *TW*

Hello all,

I've been struggling with posting this and not posting it but since right now I need prayers, I've decided to post.

Little back story before anything, I'm currently 16 weeks pregnant with identical twins. They both had their own separate amniotic sacs but share the placenta.
Anyway, Friday we had our big ultrasound appointment and a doctors appointment to check on them and do all of the necessary measuring. Everything was going normal as far as I was concerned, 2 heartbeats and everything. Then the Ultrasound Tech said "I'm having trouble finding a membrane." We didn't have this issue at all 8 weeks ago. She then proceeded with everything normally and even got a positive gender ID on twin B, we're having boys! I saw that they we're boys even before she said it and DH was over the moon. Twin B was sitting kind of high with a higher heart rate then his brother but she didn't act like anything. I knew something wasn't right by the way she kept saying "The doctor is going to go over all of this with you." DH and I sat in the waiting room and text his parents and mine to tell them that we needed to start buying stuff for little boys. Finally, after what seemed like forever, we got called back again for the doctors visit now. She walks in the room smiling and asking me how I'm feeling. Once small talk was done she said those words that no woman or her husband ever wants to hear "I wishI had better news..." It appears that we are showing signs of Twin-to-Twin Transfusion. My sweet Twin A has close to no amniotic fluid in his sac at all and is measuring a week behind his brother, his bladder hasn't developed and his kicking we saw in the ultrasound was because he has no room. Twin B has a heart rate because he is getting all of the blood and could eventually have a heart attack due to this, he has a lot of amniotic fluid. She then proceeded to tell us they have a 30% survival rate because it was caught so early. She consulted with the MFM doctor around our town and he doesn't want our case. He said it's too severe and is sending us to Tampa. Monday they will call with the referral to the doctor in Tampa and we will go see all of our options.

I'm sorry if this is completely all over the place but it's basically my brain right now. I know that there is still hope with this doctor and they have at least 3 options to try but the doctor kept repeating the 30% survival and that the odds are low. My heart has never felt so broken and I've never felt so powerless in my entire life. I jsut need prayers and positive thoughts that we get into this doctor by Tuesday and that this doctor doesn't have a morbid prognosis for my babies. 
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Re: Twin to Twin Transfusion Syndrome *TW*

  • I am so sorry, I'm in the Tampa area too and have seen a MFM when I was pregnant with my daughter. I sent you a PM with their info. 
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  • I am so, so sorry you're going through this. I will be thinking of you and your sweet boys and hoping for the best possible outcome. 
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  • My thoughts are with you, the boys and your family. I'm so sorry. We experienced TTT in the family, but was caught WAY too late. 30% is still enough for hope and doctors are absolutely amazing at the miracles they can accomplish. Hugs from across the country.

  • I'm so sorry to hear this ..praying for you and your sweet little boys.
  • My heart goes out to you. I can't even imagine the shock and worry you're experiencing right now. 30% odds are terrifying, but doctors pull off enormous feats every day. I am keeping you in my thoughts, and hoping for the very best outcome for your sweet boys. 
    About me *TW*
    Me: 29, DH: 34
    TTC 12/2015
    BFP #1: 1/05/16, MMC 2/17/16 (10 wks)
    BFP #2: 7/13/16, EDD 3/21/16
  • I'm so sorry - keeping you in my thoughts and prayers
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  • Prayers coming your way. Im so so sorry that you had to have the joy of discovering you have two little boys by the fear of loosing them. Thank you for sharing your story, please update us when you have an appointment set so we can continue to pray for you and your babes. 
  • Thoughts and prayers sent your way momma! Hoping for a good outcome for babies! 
  • So sorry to hear you have to struggle with this. I have a friend who was in the same situation. They caught it very early as they did with you. Both boys were born overall healthy (at 27 weeks). Unfortunately, one of the boys passed away a month later due to an unrelated infection. The other boy is a healthy happy 2 year old. I know it's not the very best outcome and story but there is definitely hope. 
  • I will be keeping you, your DH and your boys in my thoughts. I hope you get better news from the perinatologist. Hang in there.
    DS 12.02.11

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  • I'm so sorry to hear this. You'll be in my thoughts. 30% means there is a chance for your beautiful boys. 
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  • I'm so sorry. Keeping you and your little men in my thoughts and prayers. Please keep us updated as you can.
    Alex
    married to M since 6.13.09
    T - 3.3.14
    A - 2.24.17
  • So sorry to hear about your boys. Praying for you and the doctors in Tampa.  If it's Baycare Health Systems, I used to work in Baycare and still have a lot of friends (nurses) who work in Baycare, if you need any connections. 
  • I'm so sorry that you're going through this. Sending positive thoughts your way for the MFM visit.
  • I'm so sorry to hear this. My thoughts and prayers are with you. Stay strong. 
    DH: 29
    Me: 27
    Married 9/20/14 
    BFP: 7/3/16
    EDD: 3/13/17

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  • I'm so sorry you are going through this, i hope this doctor you see next week can help your boys!! I'll be thinking of you...
  • I am so sorry you are dealing with all of this. Thinking of you, be sure to keep us updated, I'll be thinking of you and the twins!
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  • I'm so very sorry to hear this. Sending you prayers and positive vibes! 

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  • Praying for you, your hubby, your babes and family. Praying for the doctors as they work to help your little guys.
  • I am so so sorry to read this.  Prayers that they are able to get you in quickly and praying so hard for your little boys.
    Me: 36  DH: 35.
    Married: 8/2005.
    BFP: 6/22/2016 EDD: 3/4/2017.
  • Hey love I am holding and praying for u for the best outcome for you and ur precious little boys. I am on watch for the same thing and I know how scary it is. I can not imagine how u feel. I am sending u lots of hugs right now. And just know friend. I am thinking of you and urs hard today. Lots of love sweetie


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  • Sending you all the good thoughts for your little boys. Hopefully you can get into the doctor soon and get more answers
  • A million hugs, my friend. I am holding onto hope for you and your babies, that the doctors will be able to find a way. 
    Married DH 12/31/13
    BFP#1  1/21/14 ended in loss DNC 3/5/14
    BFP#2  7/2014 Baby Girl born 4/15/15
    BFP#3  2/10/2016 natural mc 2/27/2016
    BFP#4 6/25/2016 Due 3/2/2017
  • I can't imagine how you are feeling but I am sending hugs, thoughts, and prayers.  I have confidence in all the progress modern medicine has made with TTTS and I'm holding out lots of hope for your family.  We are all thinking of you.  
  • I am so sorry to hear this. My heart hurts for you and your family. Keeping you in my thoughts and prayers and pulling so hard for that 30% chance of hope. 
  • Sending prayers of a miracle to you and those sweet boys! 
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  • Hang in there. We are all behind you, thinking about you and praying for you. 
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  • I'm so sorry you're going through this, you have incredible strength and I will be keeping you & your family in my prayers & thoughts. Sending positive vibes and hugs!
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  • I am so sorry.  I will pray for you and your little boys!
  • So sorry you are dealing with this Hun. Maybe a specialist can figure out how to fix this for you and your baby boys. Sending all the thoughts and prayers.
  • keeping you and the boys in my prayers..as well as their doctors.
  • I'm so sorry for this unimaginably scary news.  I will be praying for you and your boys!
  • I can't imagine how disheartening your situation is. Praying this doctor has wonderful options and you get your miracle!

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  • I'm so sorry that you're faced with such a scary and devastating situation. Prayers for you and your babies, and hoping for the very best outcome for you all!
    DD (8), DS (5), DD (3)
    baby #4 due March '17!
  • You and your family are in my thoughts and prayers.  Positive thoughts.  
    ME: 34
    DH: 37
    DD: 03/17/17
    DS: 12/06/19
  • praying for you & your baby boys! God still works miracles ❤️
  • Sending you so many thoughts and prayers. xo
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