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  1. #151
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    Default Has anyone kept their edwards syndrome baby?

    Wonderful news that he's kicking Ally. I always think of you two and wonder how you are doing xx

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    Allymumtobe  (19-02-2013)

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    Default Has anyone kept their edwards syndrome baby?

    Hi Ally, I have been reading along and thinking of you and little Angus frequently.

    It's so wonderful to hear that he is giving you some reassuring kicks.

    I hope your next scan goes well. I will be thinking of you.

    Big hugs

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    Allymumtobe  (19-02-2013)

  5. #153
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    Default Has anyone kept their edwards syndrome baby?

    Pleased to hear Angus' update ally

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    Allymumtobe  (21-02-2013)

  7. #154
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    Stole this from my blog to leave an update. Today is not a good day for me. Angus is happy as ever though kicking away telling me not to be afraid...

    Today we had a scan on Angus’s brain and heart. At first we thought it was going fine, until our doctor went and got the Cardio Specialist.

    Angus indeed has a small VSD (hole in his heart), but thats the least of his worries. They found that the right side of his heart was enlarged presumeable from s narrowed artery on the left side causing pressure on the right. This is bad as he could go into heart failure. There is also alot of “pressure” in his skull which basically means fluid so his brain cannot grow and develop which if it continues to get worse could lead to buba being totally brain dead. There is a hole in his left diaphram that is allowing his intestines to push their way into his chest cavity crowding his heart and left lung, if he was born today his left lung would not have any room to inflate for breathing.

    there was also talk of an enlarged gall bladder which they do not know what caused it they are hoping this doesn’t indicate a liver issue although the liver looked fine today, his kidneys are also in great shape apparently. they talked about something corpus something? that was severely under developed or possibley missing but they didnt elaborate. they wouldnt tell me anything really it was very frustrating!!

    besides that he was two weeks behind in growth besides his legs which were only 1 week behind which explains all the big kicks i’ve been getting!!



    I hope my Ob can tell me what everything means becuase it all sounds very scary and i’m terrified for Angus. I pray to god theres something (anything) we can do to help my baby boy. I know he’s not long for this world but i just want to hold that beautiful boy in my arms and see him breathe, just for a little while.

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    KaraB  (12-01-2014)

  9. #155
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    Oh I'm just so sorry to read your update. When are you seeing your Ob? I hope they can do something to help him xx

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    Allymumtobe  (26-02-2013)

  11. #156
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    LifeInShadesOfGrey is offline Just a little bit silly :)
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    In so sorry to hear about your most recent update. I hope something positive is on the way for you all soon xx


    Sent from my Unicorn.

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    Allymumtobe  (26-02-2013)

  13. #157
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    Darling little boy. I truly hope you get your wish. Keeping you both in thoughts. Fight hard sweetheart, just a little while longer.

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    Allymumtobe  (26-02-2013)

  15. #158
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    I'm so sorry they haven't given you a clearer idea of what's going on . They probably don't want to worry you more than they need to but at this point it's silly to keep you in the dark.
    I hope you get some answers soon. It must be very upsetting to not have a clear idea of what's going on.

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    Allymumtobe  (26-02-2013)

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    I'm so sorry to hear this...I'm thinking of you and your beautiful bay boy xx

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    Allymumtobe  (26-02-2013)

  19. #160
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    Tomorrow morning I see the ob I hope that there is a plan to help him


 

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