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One of my Twins has TOF and i'm scared.

CaseyAM78CaseyAM78 member
in Multiples
Well I found out at 16weeks I'm having twin girls, at 18weeks they said Baby B's heart didn't look right and had me head into Boston a few days later at 19wks  for an appointment with a Pediatric Cardiologist who was amazing in breaking the news to me that my sweet Ruby in deed has Tetralogy of Fallot (TOF) and will need surgery after she's born. It will depend on how the growth of the pulmonary valve grows whether she will need surgery the first 4days she's born or it can wait til she's 4 months old. I'm beside myself trying to figure out the best ways to handle this. Plus side of things this type of Heart defect is one of the most common of them. I have a almost 6yrs old son who knows his sister has a sick heart and his other sister Lyla has a healthy heart. His only concern was, Will he be able to give her a kiss for good luck before surgery. I'm trying to figure out how I'm to spread myself so thin. one kid who understands way to much lol, one who will be healthy and possibly won't need much NICU time at all if any. And one who may not be able to come home for a while. I have the help of my parents which I'd be lost without. The twins dad I told him he needed to get his life in order (stop drinking, stop the drugs and get a real steady job cause the  working one week a month and getting paid under the table isn't stability, he couldn't even put food on his table for himself needless to say a family) He's way more of a mess than he was when we first got together and its gotten worse since I got pregnant. I broke up with him in Sept. he was spiraling and I wouldn't' let him take us all down with him. Anyway I haven't heard a word from him in a month and so he's not aware of what's going on, I don't' think he'd care either way.  When I left I told him to clean up his life so he could be a father. He pretty much laughed cause he doesn't see what a mess he is.  I'm trying to learn being a single mom to three kids when I've only got experience with one. How do I spread myself so thin? I feel like I need to have this planned out before they get here and I'm at my half way point. Does anyone have a baby who underwent heart surgery? How do you cope and handle with the rest of the family?     Thank you for letting me vent.  
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Re: One of my Twins has TOF and i'm scared.

  • AandStilltryingAandStilltrying member
    Oh sweetie. My heart breaks for you. First of all I admire how strong you're being. You're gonna have to put 1 foot in front of the other with all this. Hopefully friends and family can help watch your oldest kid, while you care for the twins. Lots of prayer and lots of reminding yourself that your kids are what is the most important right now will help pull you through.

    Thinking of you.


    10 medicated IUI's (3 with injectables). 
    IUI #1 (medicated) Jan. 2013-BFP!!!!- Beta's didn't double, MTX shot for possible ectopic.
    8 IUI's between April 13-April 14 = BFN 
    IUI #10 and final before IVF, injectables May 2014- BFP!!!!  TWINS!!!!

    7 week ultrasound showed 2 wonderful heartbeats!
    8 weeks to the ER with vaginal bleeding while on vacations!  Diagnosed SubChorionic Hemorrhage.  Babies are both great.
    9 week ultrasound showed both babies are still great.
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  • kefttsckefttsc member
    I have no words of advice or experience to share, but you should be proud that you kicked the boyfriend to the curb since it seems he would have been more trouble than help.  You are very to lucky to have your parents to help.  Thoughts and prayers with you!
    image
    MMC October 2010
    BFP #2 June 3, 2014
    Twins?  You mean two babies?  WOW!
    Team PURPLE!!
    We are excited to meet William Alexander and Harper Abigail in 2015!
    Pregnancy Ticker

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  • MrsP419MrsP419 member
    You are such a strong person!  My older two are so loving toward my twins; I am sure your DS will be too!  Accept every ounce of help you are offered: parents, neighbors, friends- whatever.  Keep a list of the things you need at any given time (even simple grocery items) so you have things to tell people when they ask if they can get you anything.  I wanted my mom as much as possible when my twins were little.  
    Prayers for you and your family, especially that sweet baby girl's heart! 
    DD- Born 03/09/2010
    DS- Born 01/21/2012
                                              Lilypie First Birthday tickers
                                                  

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  • rlk2rlk2 member
    Big hugs. You have so much going on right now. You are one strong mama!
    TTC 2 years- Me and DH (28) with (severely) low sperm count- less than 40 total (last 2 SA showed only 5 and 6 sperm each)
    IVF #1: ER 1/23/13- 4 eggs retrieved, 3 eggs fertilized; ET with 1 embryo 1/28/13 2 frosties beta #1 2/5 was 4.8- beta #2 2/7 3.5; BFN
    FET #1- transferred one beautiful 4AA embie. Praying this is my take home baby. Beta 5/7/13- BFFN!!!
    IVF #2: ER 7/17/13: 6R/3F- transferred 1 blast and 1 10 cell embryo 5dt.   Beta hell.  #1 2.5, #2 2.2- BFFFN! REALLY?
    IVF #3: ER 12/1 and only 2 retrieved.  1 fertilized with ICSI.  Was planning on transferring one fresh and one frozen....fresh was only 14 cells at day 5...CANCELLED and devastated due to 5cm blood filled cyst in ovary and blood in uterus.
    IVF #4: Antagonist protocol with endometrial scratch day one of stims.  ER 4/21: 6R/4M/3F- transferred 2 beautiful blasts (5dt) and one was hatching!  No frosties but hoping we won't need it!  Beta 5/4/14- 444(8dp5dt), Beta #2 10dp5dt 1002!  THIS HAS GOT TO BE IT!!!!!!!!!!  First US 5/15 we saw two of the most beautiful gestational and yolk sacs I have ever seen!  
    ****FINALLY PREGNANT WITH DI/DI TWINS!!!!!!!  

    BRINLEY AND RILEY LONG.  Born November 20, 2014 at 32 wks 3 days.  4lbs7oz and 4lbs5oz.  1 month NICU time for "B's" and growing and feeding.  Now healthy, thriving, beautiful little girls!
     imagehttp://i62.tinypic.com/2dl9ap0.jpgpghttp://oi61.tinypic.com/o7t1y0.jpg

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  • rcnavywifercnavywife member
    I don't really have much else to say that the other posters haven't covered in terms of advice. One of my triplets underwent heart surgery for a different reason. It was towards the end of his NICU stay. One of the scariest days for me but he is home and thriving. It's amazing what they can do for these babies. Hugs to you. Stay strong and lean on your friends and family.
    Me: 33 DH: 36 Unexplained IF
    First pregnancy - DS 01-Apr-09;
    3rd cycle Clomid/IUI after 2 years TTC
    TTC #2 since ~June 2010
    IUI #1 & 2 - Clomid/IUI - BFN
    IUI #3 &4 - Gonal-F/Ovidrel and IUI -- BFN
    IUI #5 - Gonal-F/Ovidrel and IUI -- BFP!!
    EDD: March 22, 2013
    It's triplets!!


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