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Thread: Dealing with bad news

  1. #1

    Default Dealing with bad news

    My baby just got diagnosed with having inuterine growth deficiency and to make matters worse they also suspect she has a heart condition which will require surgery soon after birth. So we are possibly looking at having to deal with a small possibly pre-term baby that needs open heart surgery.

    I am currently 21 and a bit weeks and they will not be able to diagnose the heart condition with any certainty until 32 weeks. However the fetal cardiologist said his gut feeling was it will be an issue.



    Im just finding it really hard to deal with. Im trying hard to stay positive.

    Any advice on how to put it aside for the moment and enjoy at least some of my pregnancy?

  2. #2

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    Oh hun.
    sending you lots of thoughts and warm hugs.

    I know the girls here will have lots of advice for. My advice (very cliche i know) focus on the positives and the great feeling of being pregnant.

    hugs
    xxx

  3. #3

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    The best advice I can really give is - don't fight it. If you feel you want to cry, then do it. If you hold off on that, and things are exactly as he said, its just going to be twice as hard at a time when you need to be ready and level headed. Best thing you can do for your mental state, imo, is let it all out. People always try and bottle it up, but I found letting yourself follow the need to be very therapeutic.

    Once you have mourned for the loss of the 'perfect pregnancy' as every woman envisions at the beginning, you are prepared for the challenges that reality likes to bring crashing down into our ideal worlds.

  4. #4

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    Thanks for your advice. I'm trying to deal with it the best I can. Lots of tears but I think bubs knows cause everytime I get really upset I get a few reasuring kicks in the gut to remind me she's ok.

    I just find it really hard when everyone keeps commenting that I'm not showing much yet and look really tired. I just want to scream at them, but instead I just have to explain things aren't going so well.

    And then you get people, including my family, putting in their advice that wasn't asked for. One person even asked how much all the surgeries are going to cost us, seriously as if I care about costs right now or ever. Some people just dont think.

  5. #5

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    and hoping the rest of your pg is a good one. Hopefully the news is better than expected at 32 weeks. Focus on looking after yourself and that beautiful baby you are looking after inside of you. Unfortunately unsupportive and ignorant people are always around to give advice, smile and ignore them. It's good practice for when your baby is here!

    Enjoy the beautiful time you are sharing with your baby girl right now as much as you can.

  6. #6

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    I agree with what Inertia said.

    To add to it, maybe try doing some research when you are ready to find out exactly what everything means.
    A lot of information is given in statistical form which doesn't help when YOU are the one facing everything so if you researched what everything is not only will it help you to better understand it in a round about way it helps you prepare mentally for what lies ahead.

    I am so sorry you are facing such a difficult time,my advice is to just take each day as it comes, the good the bad and the down right devastating. There is no right or wrong reaction.

    As for the people saying stuff - Unless you have been in a situation like this there is absolutely no way they can understand. It doesn't make hurtful comments better but from my experience telling myself that they are only saying things to try to help or to understand what I am going through can help a little.

    People often don't know how to help and really its all they are trying to do you just have to bite your lip at the time then let out all your frustrations in here

  7. #7

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    Update...

    Had another scan this week and more bad news the blood flow to the placenta is compromised. At the moment our little girl is still growing and the blood flow to her brain and vital organs seems to be okay, but the doctors seem unsure of exactly how long she will be okay for.

    I'm only 24 weeks, and the doctors are talking about delivery if she starts to struggle.

    Its just so scary, the chances of survival for an extremely preterm baby with significant growth restriction are not good.

  8. #8

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    For every day she is over the 24 week mark the better and yes while extreme preterm babies have low survival chances - there are ALWAYS those that go on and survive and do have quality lives.

    Will be keeping everything crossed everyday counts hun so just hang in there and hope for the best.

  9. #9

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    It must be awful going through all of this. Just try to be as positive as you can and try not to stress about the unknown as you can't now what the outcome of all this will be and worrying about it will not improve things.

    Remember that not everything they see on an ultrasound is accurate... I had both a DS scare & two weeks of stress about cord blood flow due to ultrasound results when in actual fact all was well.

    Stay strong for you bub.

  10. #10

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    I have no advice but my thoughts and prayers of with you

  11. #11

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    A close friend of mine has just had twins at 35 weeks one of whom had IUGR and heart problems. they knew they were vey bad from 21 weeks pg but couldn't really tell until birth. She was born at 1.3kg and 32cm long but is a little fighter and is doing well in hospital. Her heart problems aren't as severe as they thought and despite being too small to operate on yet she is doing really well. Its been a tough 2 weeks and there has been some difficult times but things are currently looking up.
    My friend found that "Heart Kids" were brilliant support.

  12. #12

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    Can't really offer advice but you are in my thoughts and prayers. Just try and stay strong for your little one.

  13. #13

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    Thanks for your support. It helps knowing I can come here and vent and get support of people who actually understand.

    Im taking a lot of comfort in the fact that bubs is a big wriggler and spends alot of the day moving around. So I figure she cant be doing too badly just yet. Im just hoping she can hold on til 32 weeks and be 5 pounds (not sure exactly how realistic that is). But at this stage Im taking each extra week she can stay put as a blessing, and if things are worse at the next scan, we will count each day as a blessing.

  14. #14

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    all things considered you have a great attitude and I love how she kicks you when you are down to reassure you - see you already have a bond!!

    and for you, I can only imagine how scary this all is for you. Do you know she is a girl or just suspect it?

    Hope you make it to 32 weeks to go and concentraing on one day, one week at time will help you to stay sane.

  15. #15

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    Sezza - Although I don't have any wise words, my thoughts are with you.

  16. #16

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    We werent going to find out what sex our baby was but I was looking over the specialist's shoulder at my referal notes and there it was clear as day under amino results XX. But I'm glad we know it helps with all the dramas. I can call her by name when I give her daily pep talks on growing heaps, staying strong and remembering to kick me ocassionally just to say she's ok.

  17. #17

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    Sezza- thinking of you at this hard time for you. I am sure it must be scary and very stressful and I hope all works out OK

  18. #18

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    sezza, reading that brought tears to my eyes, it sounds so beautiful.

    The reason I asked is apparently statistically girls tend to be stronger then boys when they are premmie, something to do with survival of the fittest and girls need to survive more then boys or something so that is good to.

    Have fun thinking of names, keep giving her those pep talks and hope things work out for you. I look forward to sharing your journey with us if you are happy to do that.

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