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  1. #1
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    Default Help! Feeling lost - heart issues still waiting for diagnosis

    Hi all,
    Im feeling so lost and alone right now. Im not sure if i should even be posting in this forum but i just needed someone to talk to. You all are so strong for getting up and trying again after the horrible things that have happened. I guess i just need some words of strength...
    After finally falling pregnant on our 5th try of ivf we were told at our 12 wk scan that our babys heart has not formed properly. Sounds like hypoplastic left heart syndrome to me but the specialist wont make a diagnosis until 15 weeks. Im not quite 13 now. Ive looked at what the babies have to go through with this disease & it breaks my heart. I think about terminating and that breaks my heart. I feel so lost & confused and DP just says we have to wait for a diagnosis until we make a decision. I know hes right but yeh....cant turn my mind off. If we were in melb the ops would be easier, if it was just us it would be easier (dp has a child from previous relationship) money too, we dont have much of! Ugh, i feel like im losing my mind.
    Has anyone been through this or can put me on to someone who has?

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    Prob should have put this in the help with results area - sorry, brains a bit addled.

  3. #3
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    GrabbyCrabby is offline She is everything I need, that I never knew I wanted... She is everything I want, that I never knew I needed...
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    Default Help! Feeling lost - heart issues still waiting for diagnosis


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    Default Help! Feeling lost - heart issues still waiting for diagnosis

    Just wanted to offer you some love and good vibes and ((hugs))

    I think there is a 'heart mums' thread in this forum, maybe under the child health sections or special needs? Have a hunt around, you'll find some amazing mums who have been through tough times and come out the other side with a few bruises but a smile on their face.

    Good luck with your little bubba

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    KayJaye - Sorry you are going through this. As if IVF isn't hard enough to get through, to be given more to deal with is heartbreaking.

    I went on a little search for the heart mums thread and have attached the link. I really hope your little one is a fighter & your outcome ends positively (even if that means a few surgeries). All the best

    http://www.bubhub.com.au/community/f...rt-Mums/page62

  6. The Following 2 Users Say Thank You to hoping4asticky1 For This Useful Post:

    kayjayehoping1  (02-02-2013),Mod-Myztik  (31-01-2013)

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    Default Help! Feeling lost - heart issues still waiting for diagnosis

    I know some of where you are at. I haven't been through ivf like you to conceive but I did lose two bubs before getting my take home one.
    That said, at our 20 week scan our baby girl was diagnosed with hypoplastic right heart syndrome/tricuspid atresia. Very scary. I of course went through a myriad of emotions. What a rollercoaster ride. I don't know if I can help you as its a fairly new journey for me but I will definitely be a listening ear or offer you some advice based on my experiences. The process for HRHS and HLHS are usually the same -if you've googled you know about the fontan procedure.
    My little girl is now just 9 weeks old. She had her first surgery at 4 weeks. A two week hospital stay and we've been home for three.
    There are some great organizations out there that offer support too. Heartkids is one.
    Anyway... Feel free to ask questions or vent away. It's a tough journey but like you will hear from lots of 'heart mums' these kiddies really are fighters and very strong.
    Hugs to you. It's devastating to find out. Let me know if I can help in any way. xo

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    Thank you GrabbyCrabby, Jellyfishie & hoping4asticky1. I really appreciate you replying, just nice to know I'm not really alone, no matter how much I feel it
    Tamtam, wow - Good on you for taking that road and awesome that your little girl is going well so far. Would you mind if I pm you? I probably have a million questions so I apologise in advance!
    Thanks again ladies xoxo

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    Default Help! Feeling lost - heart issues still waiting for diagnosis

    Not a problem. Absolutely pm me and ask away. Ill answer what I can!!!

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    Default Help! Feeling lost - heart issues still waiting for diagnosis

    Just wanted to say I am so very sorry for this heartbreakingly tough decision you need to make and I know how incredibly hard and devastating ivf is having gone through TTC naturally then the whole ivf process. I can only begin to imagine what you are going through to now have this happen.

    I hope others can help you with more discussion on the impact of this potential disease as I am not familiar with it but just wanted to offer you big hugs an hope you get the support you need.

  11. The Following User Says Thank You to me+he&she=three For This Useful Post:

    kayjayehoping1  (02-02-2013)

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    I have my echo on Wednesday - 5 more days!! They're getting me in earlier, ugh so scared. So want this day to come quickly but not ever.....


 

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