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Thread: Parenting After Miscarriage or Loss - February 2010

  1. #37

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    Well we are back... Thankyou all for thinking of us today. Its been a toughy...

    The "Microarray" chromosomal analysis of Imogens blood has shown an abnormal result.
    She has an "interstitial deletion of q28"... There is no name for this due to the minimal documented cases of this disorder. Thus it is difficult to gauge her prognosis.
    Dr Gattas informs me this is a very rare disorder & an answer to why Imogen has "mild dysmorphia", very small stature & "global develoopmental delay". He explained that as with most chromosomal abnormalities there is a wide spectrum & it is impossible to predict weather Immy will be severely neurodevelopmentally delayed or mildly so. It will become apparent over time. She will need lots of support, learning opportunities and stimulation. He does not believe that this is an inherited deletion (due to the "normal" intellect of both parents). Therefore it is unlikely that the other children could pass this on. However, should Imogen have children she likely would pass this to her children. It would also seem that it is not degenerative so any learning that she achieves thankfully will be retained.



    So it's a lot to take in. He has given me the name of a support group on the internet for rare genetic disorders where there are two children with the same issue.

    I felt relieved that we had an answer - but it then hit me and it feels very confronting. It is also hard to sit there in the Doctors office & hear this information and know that it's only me that's hearing it... YK?

    Anyhooo that's the news...

  2. #38

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    Hello.

    I am going to try and get back on BB later tonight and do some personals. If I don't get back on I just wanted to let Michelle know that she is in my thoughts.

  3. #39

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    Oh Deb.. I don't know what to say. There's a tiny part of me that's releived you have some answers but I guess they're not really the answers we were all hoping for. I can't imagine how you must be feeling and yeah.. to be sitting there listening to the information on your own must of been incredibly hard.. but we're all here for you and hopefully you'll also find some comfort from the online support group they suggested. Thinking of you.

    Mako - Good luck with the big boys bed.. we didn't really have any problems with DS either, so hopefully it will be a smooth transition!!

    Jo - How did you go with your doctor today??? What's the plan of attack?? Hopefully you'll have another scan booked in for late next week!

    Janie - I'm so glad you still made it to the calm birthing classes. When's your next CTG?? I'm sooo happy to help out whenever you need it.. don't have much on next week, other than a couple of morning things here and there, nothing major though.

    Megsmum - Hope you start getting some more sleep soon!!

    Willow - Hope you get some more sleep too... and hope it makes you feel a whole lot better too.

    Freya - It's so great to have some good news in here for once!! And good luck with the puppy!

    Hope everyone else is well.

    AFM - I'm doing ok... feeling a bit crappy again today, just a bit of a 'down' day again. I'm not looking forward to next month.. it's already hitting me that one of our angels would have been born in March and I'm still not even pg yet!! For some reason, it helped the first time to be pg again by the this time... iykwim??? Anyway can't be helped and I'm still praying for a BFP soon.. so hard to know when to DTD or test after a D&C... we'll just wait and see... would definitely be a miracle if it happened first cycle, so I'm not expecting it.. but still praying anyway.

    DS had swimming lessons this morning too.. it was great, he's full of confidence in the water.. almost pushing me out of the way and trying to swim on his own... so funny!! He loves the water so much. Then I treated myself to a new top at the shops.. decided I deserved it!!! We're off to Geelong on Saturday morning too so that will be nice.

    DH is out at a work dinner again tonight so I'm sure I'll BBL.

    Kel xxx

  4. #40

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    Deb, wow, what a full on day. I have been thinking of you and Immy lots. I am relieved that you have an answer, but hear how frustrating it is that there is little knowledge about this disorder. Especially for someone like you, who likes to be armed and informed. But if anyone can help Immy through this, it's you, she was SENT to you so you could help her through her life. You are an amazing, incredible, strong mother and woman, and I know you will do everything in your power to help Immy down this road. I hope you check out the online support group too, it's important for you to have people in your life who understand, and who can help you as you help Immy. We of course will be here anytime you need us . Being on your own must have been doubly hard........extra hugs for you lovely

    Mako, thanks hun . I am quite resigned to the fact that a caesar may be necessary to deliver our little baby, but we both really feel that Calmbirth will help us through that as well. And if I do go into labour, then hopefully it will see us have a very calm birth LOL! I think you'll be surprised at how well Sage goes in a big boy bed. It seems such a big step, I know, but I'm sure he'll take to it very easily.

    Megsmum, I think you're right . But now that I've finished work, and there are now extra expenses with this pg (which is completely fine) things are a bit tighter than we expected, so a lappy is probably out of the question right now. I'm getting an iphone soon though hahahaha!

    Kelly, thinking of you my love . I totally get what you mean about being pg by an EDD, I'm sure everyone in here understands.

    Michelle, thinking of you lots lovely, will be giving you a cyber cuddle Wish I could do it in person.

    ETA Willow, thinking of you too hun, sleep deprivation bites It will pass, it truly will

  5. #41

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    Michelle - Just want to send you a massive hug and wish you all the very best for tomorrow. I'll be thinking of you. Take care and hope you get some sleep tonight!!

    Kel xxx

  6. #42

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    OMG.. I have an avatar.. very exciting.

    Sorry, just got a wee bit excited.

    Big hugs to everyone.

    Kel xxx

  7. #43

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    Deb: wow Hun, you've had so much information to absorb today. I have no wise words, all I know is that you are blessed with a beautiful little girl and you are an amazing mother. I pray that the challenges you face together only make you stronger.

    Michelle: Here for you in every way possible as you face tomorrow. I hope the wait for results is short and you get some wonderful news.

    My news seems inconsequential at the moment but I just wanted to share that B rolled today. Photographic proof on FB.

    BBL for more persies.

    Lv Spring xx

  8. #44

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    Hi girls,

    Just a short one - and want to say thank you for your lovely words to me, I go through tough periods of grief, it never completely goes away as you all know. I won't go into it all now or I'd write a novel, but you cheered me up girls, thanks. I know so many of you are really doing it tough at the moment - Michelle, you are in my thoughts for tomorrow. Jo, I pray your bub continues to grow healthy and big. Janie, how you doing? Jayne, thanks for sharing. Willow, praying for sleep for you hon. Kelly, hang in the babe, it will happen soon enough, keep diverted in the meantime. Deb, I know you and Immy will contine to be the beautiful team you already are, hope now that you have some clearer results you might fine more kindred spirits for you both. Mako, how you doing hon? Anna, glad you got some good news! Rach, hugs babe, and love to your beautiful Lilli. Spring, yah on B rolling. Flynn rolled at 4 days old in hossie, whilst under photo therapy lights, rolled from tum around, couldn't believe it - tell our boys to stay babies for a while longer yet!!

    Too tired and vague for much else girls, and got to hit the pillow. Before that my little lad needs some snuggly mummy time.

    Lee xo

  9. #45

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    Well i rang the dr after 2pm and spoke to the results lady and she said they have the report but my dr hasnt had a chance to look at it as he'd been at the hospital delivering a baby but shes marked it as urgent and she was going to try to get him to ring me back today but i didnt get a phone call so i'll ring tomorrow and either try talk to my dr or talk to the results lady again.

    Michelle: goodluck tomorrow you'll be in my thoughts

    Deb: i dont know what to say, that is alot of information to take in

    Kelly: i love your avatar

  10. #46

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    Wow, so much to catch up on!

    Jo - what did your dr say today?

    kelly - I love your avatar, yay! What do you do to get an avatar? I can't wait to get one too! I also totally get wanting to be pg again before the EDD of an angel. Who knows, maybe it will happen! It turns out that I was pg with DD on the EDD of our first angel, it was just too early to know at the time. I hope the same happens for you!

    Mako - good luck with the big boy bed. I have just set up DD's big girl bed but like you am reluctant to start putting her in it because we have had enough sleep issues already and I don't want to create any more! Hopefully both our little ones will go well.

    Deb - wow, what a lot to take in, and I agree, it must have been hard to take in, especially on your own. I am glad to hear there is a support group, I hope it helps. Like the others have said, you are a wonderful mum and Immy is very lucky to have you and I am sure you will do a fantastic job of supporting her needs.

    freya - woohoo on the housing situation, that is great news!

    willow - I hope you start to feel a little more upbeat soon. I think I had forgotten just how debilitating sleep deprivation is, but it is starting to hit me now!

    Lee - i hope you enjoy your snuggly mummy time! My DS also rolled while in hosp and has done it again at home. It seems way too early to me too! I swear he is growing so fast I can almost see it, and I just want him to stay little!

    Spring - yay on the smiles and cooing, that is lovely! You sound so happy with your gorgeous little men.

    megsmum - sorry about the sleep deprivation. I can definitely relate right now! I hope we both get a good night's rest soon.

    Janie - when is your next CTG? I'm glad to hear how well the calmbirth classes are, and I love how relaxed you are sounding! That is just what you need!

    Michelle - will be thinking of you tomorrow.

    Today I had my first full day alone with BOTH kids! It was a mixed day as it seems that either both kids are happy and we are having lovely cuddles or something and I think this is easy, or else both are screaming and I don't know who to start with first! DS was sooo unsettled this arvo - wouldn't let me put him down at all, meanwhile DD was wanting my attention and all I wanted was some lunch! Finally got a bite to eat at 4pm when I felt like I was going to pass out! I am hoping this juggling act thing gets easier with experience. I have so much respect for those of you with two or more kids, especially those managing to work as well, I don't know how you do it!

    Oh, and DD is TWO tomorrow!! I have no idea where that time went.

  11. #47

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    Thanks everyone...

    Michelle I want you to know I will have my candle lit tomorrow & I will be hoping & praying for you, Omar & G tomorrow...

  12. #48

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    Thank you beautiful ladies Feeling very, very scared tonight. Just hoping to get some sleep soon and then face the process tomorrow.

    Will be back later.

    Thinking of you all and thanking you for your ongoing support xxx

  13. #49

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    Ok just a quickie before I collapse into bed and hopefully get some sleep.

    Deb - You are an amazing mum and I am sure you'll be able to tackle any challenge that is put before you. Immy was very smart to choose you. I am glad you've got some answers

    Jayne - I just want to tell you that I love reading your posts. You've got an amazing gift to make people smile. I wish I had that talent

    Jo - hugs

    Mako - hugs to you.

    Bun - Happy Birthday to miss C. I am glad you survived your first day alone.

    Spring - My goodness - Have you given birth to superboy??? Smiling, cooing and rolling.

    Willow - Hugs hun, I really really know how you feel

    Janie - I am thinking of you and your bubba all the time

    Lisa - How are you>

    Lee - I hope you are ok

    I can't believe I got RAKed. If it was anyone here thank you so much. I had a reading on Wednesday - Nothing to report except that there wont' be any more bubs for me apparently. Although she asked me if I had a boy and a girl and she didn't pick up Eva at all, so I have my doubts. Sorry I haven;t been around but I really don't think I've got much to contribute except for a hug here and there.

  14. #50

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    Deb I have no wise words either and im glad you at least have some answers although there are probably still more questions with todays news. Sending some love and light to you and Immy and for the road ahead xx

    Michelle - sending my prayers out for you for tomorrow hun.

    Bek - Im doing well sweety, you?? How is Miss Eva getting along?? Do the ring test to see how many bubbies and what they will be, the ring test tells me first baby is girl, next boy and one more after that, another boy, so we'll see how accurate it is in a few weeks.

    Janie - how are you travelling? I'll have some free time after next week if you need a hand with anything hun.

    Big cheerio to everyone else, got to go and get some sleep, im not sleeping well at all, its a combo of the heat and the stage of pg..

    Lis xx

  15. #51

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    Michelle I hope you managed to get some sleep last night. I'll be there in spirit holding you hand today. I don't know much about the amnio test hun but will you get any results back today or over the weekend or do you have to wait a while? I hope you have some answers and everything comes back much better than you are expecting Either way your little Omar is one very special little bub who is loved already by so many

    Bek Its great to see you pop in hun. I think about you often. How is Miss E going with her sleep? Has she improved at all? I hope you managed some sleep last night too

    Lisa How are you doing?

    Willow I hope you also got some sleep last night too. I remember all too well how tough lack of sleep is and its soooo hard to function at times How is DD going at school?

    Deb Oh hun I don't have any words either just lots of

    I'd better go. I have my appointment this morning too so really need to think about that too. Oh and to top that off DH's Kidney(he only has 1) is playing up again so I'm not too sure what the plan is for him at this stage. He's gone off to work this morning but who know's how long for.I'm just so so worried about him too.

  16. #52

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    Michelle - My beautiful friend, I am thinking of you today and praying that all will be well. If it means anything at all, my gut is telling me it will all work out just fine.

    Deb - I'm so sorry the results weren't what we were all hoping for. It must be an incredibly hard time for you and to have to face all of this on your own isn't fair. I know you have amazing people in your life to surround you and support you and I hope they are rallying around you now.

    Janie - You are also in my thoughts constantly. You're doing an awesome job baking that bub.

    Jo - hope you get some answers today

    Bek - Have been thinking of you in my sleep deprived state and hoping you're hanging in there. Woot on the RAK! You know, you'd be my no 1 pick if I was in a position to RAK anyone, but my own RAK doesn't expire till the end of the year I think. Can't wait to see an avvy!

    Anna/Mako
    - I'm OK, really doesn't even rate with the stuff that is going on here at the moment. See you Sunday

    Big to everyone. I know I'm not being very supportive and am not contributing much at the moment but I'm just a bit miserable and can't think of much to say.

    Got hardly any sleep last night and have to take the boys out shopping today to try and find a damn dress for D's christening on the weekend. Awesome, that should be LOADS of fun.

    To make matters worse, I log on to BB this morning to a warning PM about not turning my signature off in a thread. I am probably taking it too personally because of the head space I'm in but I know the rules, am fully aware of them and I just forgot to turn it off. It was Rach's thread and I just didn't think to turn it off when 'speaking' to her. I probably over reacted in my reply to the mods but but there you have it

    Need to go and call the GP to try and get an appt for L today. He had a fall a few days ago and is still limping Doubt I'll get him in but starting to get a bit worried about it.

    So....wasn't intending to come in here and have a big whine but looks like I have anyway. Sorry girls, I'm just not a very nice person on next to no sleep.

  17. #53

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    Dont apologise Willow; Im on the no-sleep train too so I hear ya on not being a happy person to deal with lately I will definately see you sunday; is Mako going too? Oh good cause I was feeling a little silly that I wouldnt know anyone lol

    Thinking of you today Michelle

    Crap nights sleep last night. I had one whingy toddler in with me for the first half; then I shafted him out at 1am finally got the baby to settle in his portacot............then Jett wanders in crying so Im shooshing him and threatening time out if he doesnt be quiet so not to wake Stellan. So I had him snoring in my ear and whacking me in the head with his elbow the rest of the night on top of trying to avoid him laying all over Stell when he was feeding *sigh* And Im supposed to get through 3 days of Uni + at home study doing this. Im officially fricken stupid for thinking it was doable.

  18. #54

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    Michelle: Thinking of you and sending you my love and support.

    Deb: Another for you.

    Mako: Good luck for your appointment today babe. I hope it goes well.

    Jo: I'm sorry you had to wait another night to speak to your Dr. I hope you get to speak with them today.

    Willow/Freya: lack of sleep is the pits, I hope the kids give you both a break soon. Willow don't worry too much about the warning, it isn't personal hun

    Lisa: Hope you managed to get some sleep last night.

    Bek: I'm so glad you got RAK'd you really deserve it.

    Bun: having two will be second nature before long. I may regret saying this but I actually think once you've got it figured it is easier, O is so entertained by B that I don't have to continually think of things to do to entertain him. Isn't it just so sweet when they cuddle.

    Lee: 4 days! Wow that must be a record. What a strong little lad you have there.

    I've been thinking whether or not to post this but I guess I should. The mods have told me that someone tried to RAK me but I can't accept because I'm a Mod and already have access to Plat. If it was one of you gorgeous ladies I just wanted to say a massive thank you. It made me feel so special just to know I'd been thought of. A big grin spread across my face. So if it was one of you please know that even though I couldn't accept, I still felt mighty special.

    Sending my love and support to those of you facing challenging days today.

    Lv Spring xx

    Freya: Hun, I just wanted to add this. I know Uni might seem totally overwhelming at the moment but I know you've got it in you hun. I know I studied a different discipline, but if you need tips about getting through please ask. I know my circumstances were different I was young and more concerned about my social life than Uni. I got through with the minimal amount of study (too busy drinking $2 scooners with my mates at the Uni Pub) , honestly I just figured out how to take really good notes to help me remember the huge amount of material. I'm not proud of it but I did a few exams hung over as anything and one I basically got home from town, had a shower and went it. I think because I did my work throughout the year I didn't ever need to cram the days before. I also learnt some great assignment writing techniques. So if I can be of any help let me know. I got pretty good results, could have been much better if I were sober (lol) but I guess what I'm trying to say is that I was so distracted with my social life (I guess you insert 3 kids here) but I got through. I hope this makes sense and that you don't all think I'm a drunk lawyer (lol)

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