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Thread: Premmie Mums #7

  1. #109

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    Carrie, congrats on Kyla! That is so worth a brag! These babies are stacks of fun.

    Helena, what great news about Ava's eyes. Sounds like her progress has been amazing.



    Gemma is doing well, crawling everywhere & pulling up. She never sits--only stands, kneels, or crawls! She went to bed early tonight after 10 minutes of controlled crying (with a few intervening back pats & soothing words). I hated to do it...but she struggles to stay awake whenever I'm around (ie, all the time) and would be up till 10 every night unless I did something. Even the time-honoured "nursing off to sleep" doesn't always work. She is just too anxious to be part of everything. Always plenty of activity at our house!

    Any other news? hello to everyone!

  2. #110

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    hey guys can i join this thread MY dd kenzee is 14 months old she was born at 35.5 weeks after a trying to come out at 22 weeks nd then manny times after thet we was stoked to keep her in as long as we did her birth weight was great for that of a 35 weeker she was 3 kilos but soon dropped down to 2.5 which i know is still pretty big but unfortunatly her weight was deceaving and she wasnt as healthy as we would have hoped she has had a tough 14 months with 2 operations on her airways 2 operations on her tummy and is still 100 percent tube fed at the moment she is on a feed into her tummy but next month she is getting her tube changed a a gastrostomy with a jejaluem port si that she feeds into her intetines, we are not looking forward to her going in for that op as she had major troubles last time and ended up needing to be back on oxygen for a few days, she also has hyertonia, and sensory intergration issues so she is under a ot and physio for thoses issues,
    she is now as i said 14 months old and weighs in at a unhealthy 6.5 kilos so she went from being a big premie at bith to now being the size of a former micro premie

  3. #111
    helena36 Guest

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    hi Mikenzees mum, nice to meet you and it sonds like you and your daughter have had it rough. I am the mum of a micro premmie- born at 25/6 weeks weighing in at 535g. she is also 14 mnths old 11 corrected and weighs in at 7.0 kg which to us is amazing. She is nearly walking and we have been gobsmacked at her progress. i hear so many stories of babes like your DD who have many problems even though they have been born close to term. I wonder why this is? we have been extremely lucky and my heart goes out to you and yours for all your dedication to nurturing your child. it takes a special kind of person/family to undertake all that you have undertaken. so welcome welcome welcome

    Helena 36 mum to emily 10
    Ava 25/6 weeker now 14 mnths 11 corr

  4. #112

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    hi Mikenzees mum,
    welcome to the group, it sounds like you guys have had a very tough time. what was the reason she almost came at 22weeks and many times after?
    It was great that you got so far along in the pregnancy but you have still had to endure many complications and hurdles.
    Like Helena said, it takes a special kind of family to endure all that you guys have.
    My son was born at 33+3weeks after ruptured membranes at 32+5w. He is happy and healthy now but the first 5 days he was quiet sick for a 33weeker. I quiet often feel a little bit out of place speaking with some mums of micro premmies and they presume that because he was a 33weeker he must have been fine. No one in here just to clarify everyone in here has been so supportive and helped me in every step of the way since he was born.
    Im now pg with baby 2 and hoping this one stays FT. I have a gut feeling they may not happen but still hoping and praying that it does.
    i hope her op goes a lot smoother this time for you next month.

    for the regulars in here, i have my ultrasound on Monday and hoping we find out the sex! My OB has also requested i have a further scan at 26w to check the blood flow through to baby's heart he was a little concerned from some results on my 12w scan. im staying optimistic!

  5. #113

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    hi thanks guys
    helena im glad that your former micro premmis is doing so well walking at 11 months corected that so great, sounds like she is gaining weigh wel thats great would have been a hard strugle

    Nic i know what you mean about people asuming a 33 or 35 weeker is all good and has no health issues at all i so wish that was the case congratulations on your pregnancy praying for a full termer for you

    The reason i went into labour at 22 weeks was i had PROM then its sealled over but not properly so it kept hapening again

  6. #114

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    Hi Mikenzees mum & welcome to the group! I'm sorry to hear about your rough past year. I hope your dd's 2nd year will only get better.
    Nic, what you said is right on target. Gemma came at 33 weeks & even though everything was fine...she was always pink & breathed well, never set off the monitors, no circulatory issues...you still are dealing with a tiny, sleepy baby who is very hard to feed properly.
    Since there were no health issues & she was discharged from NICU so quickly, everyone thought that I was just "home with the baby" as if with any other newborn. Many people were surprised to learn that I was not able to return the breast pump until she was well over 3 months old. I felt like I was living in a fog until she was about 6 months old.

    Nic, I hope you go FT! I know, we get so wound up in these feelings...and you wonder how much to trust yourself, or if you are making it difficult when it doesn't need to be.

  7. #115
    helena36 Guest

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    off the subject but sort of on the subject of people assuming. i am finding it incredibly difficult to keep sick people away and for them to understand that Ava, even though developmentally is doing well, she still has a compromised immune system and has only been off home 02 for 5 mnths.I'm ALWAYS having to explain her corrected age and that she does not do things like full termers. prems no matter what their gestation deal with a whole range of problems. I AM SO SICK OF EXPLAINING THIS!!!!!!somedays I just want to cry. I don't really have a social life becos hubby works away and becos winter is approaching so is flu season. People just don't understand that i cannot/ will not take ava into crowded places still becos of this. One flu could put her on a ventilator as she still has chronic lung disease. Does anyone else have these issues? and to top it all off i don't have any support and havn't had any support for babe since coming home. i've had to endure this myself while DH works away. I'm tired, lonely and just plain upset over the whole premmie experience.
    sorry about the vent ladies but Mikenzees mum has brought it to the surface for me.(not blaming hon just needed a vent you've helped humble me somewhat) I really feel for everyone who has stuff going on with their babies all the time. Just wanted to clarify that Ava is not out of the woods yet. everyday is a challenge.

  8. #116

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    i so see where you are coming from helena everyone seems to think that cause mikenzee is over 1 now she has the immune system of any other child and it is so not the case as with your litle one, i have had people come near her with a cold or something and be like oh all kids get it doesnt do any harm and it frusatrates me cause everytime kenz gets a cold she ends up with a full blown chest infection and cant breath with out o2

    Iknow that Ava wouldnt be out of the woods yet i was just looking for the positives, i know everyday is a strugle and every illnes brings back nicu memeories and fears of what the illness will turn into

  9. #117
    helena36 Guest

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    hey mckenzees mum, it is really hard to stay positive all the time, damn i think i've stayed pretty positive despite repeat hospitalisations and to be honest it has made me appreciate my life a little more each day. I never took my pregnancies for granted and someone had a plan and this is what we have. most days are great but today and lately more days have been ..you know... woe is me but i remain faithful to raising healthy happy kids. Sometime I really needa break. hubby and I have not had much time together in the last 14 mnths and frankly i need a rest. I really do think you are marvellous and I think mums and dads of prems and sick prems deserve medals.

  10. #118

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    Mikenzees mum- you did extremly well to have PROm at 22weeks and make it to 35weeks. I had PROM at 32w5d and only lasted 5days, doc did tell me the longest i'd hold out would prob be 4 weeks so to hold out 13weeks is amazing.

    helena- your doing great and you do need a break. unfortunatley the relationship between the mum and dad are usually the first to suffer because baby obviously comes first. do you have some family you would feel comfortable leaving Ava with even just for a few hours so you and DH could go have a nice lunch or dinner and walk somewhere?

  11. #119

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    nic
    I was very luck y in that aspect at 22 weeks only had a relitively small leak so i sealed over somewhat but unfortunly not well enough, unfortunatly though some of kenzee develpopement was hindered from then on

    helena you are doing so well to stay positive i know how hard it is, and i so understand about it being hard to have time with your husband, we have the same thing and when bubs are sick like all of iurs on this thread they tend to be very dependent on there mums 24 7 which get draining

  12. #120
    helena36 Guest

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    hey everyone just wanted to thankyou for understanding how difficult things can get.
    unfortunately my parents live 3 hrs away and yes a break is definantley on the cards pretty soon. i don't trust my mother in law all that much and she lives 5 min away. there have been times when hbby and i just wanted to have a nice dinner out and MIL goes to bed at 8pm and won't come to our house to babysit(upsets her routine) so i said to hubby that without a support network our relationship is fast going down the toilet. I really need to unwind and feel female again, not just a mum.that came out badly but i think you get my drift. I love my kids to bits and am fiercely protective but... jst lately have wanted to be on my own and feel resentful that the kids are around. That sounds so selfish and I am guilt ridden for thinking this. I've been wondering if the whole hospital experience has somehow caught up with me because as you know you are on auto pilot most of the time concentrating on getting your babe home. Even when i came home it was tough, always worrying about their health, the impact on your other children becos you were not there for them alot. (this is my experience anyway) god I'm rambling. Do you think this could be delayed shock? i think I need help.

  13. #121

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    it coluld be delayed shock helena, as you said throughthe whole NICU time you just run on auto pilot and even when you are home and things are still really bad you just go along and do what you have to do, and until you you have time to really think about whats hapened thats when it all gets on top or you

    I know you love your kids i can tell that from reading your posts an i agree you do need time to be you not just a mum, thats not selfish at all you have been through a traumatic 14 months and i know you sill have a hard road ahead and you nee to be have time for you in order for you to be able to deal with whats going on

    If you ever need to talk Im here i understand what your going through, and whats funny i am typing all of this to you and i really should take me own advice

  14. #122

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    Hi everyone, I'm sorry to post about what probably seems trivial compared to what alot of you have gone through, but I need some advice.

    My Nicholas was born at 35 weeks after I went into spontaneous labour. He has done amazingly well from the minute he arrived. We are BFing, and he is now only having a comp feed 2-3 times a day, instead of after every feed. Sometimes he even refuses it YAY! He is actually feeding really well almost all of the time, but I do have to undress him for feeds to keep him awake. He is getting better at staying awake (my EDD was this Saturday) but on some of the occasions that I have left him dressed he struggles to feed as well.

    I am happy to undress him each time, except that it really disturbs him, he hates it. And I hate to do it to him when he's had a really nice feed and fallen asleep!

    So.....did any of you have to do this, and if so, for how long? I know it's not a big deal, but I don't have anyone else to ask. Because he's doing so well, everyone forgets that he was prem and assumes that he's just like a 'normal' baby.

    Oh, and also, how long does it take them to get rid of the mucous in their head? We've had a couple of scary episodes lately, I really hate it..........

  15. #123

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    It sounds like Nicholas is doing really well...congratulations!

    I would keep undressing him, even though he hates it. You will be past that in just 2-3weeks. I know it seems mean, but at this point his need for food is greater than your (perfectly normal) desire not to disturb him. Once his weight increases a fair bit, he'll have the strength to feed well & he won't need the stimulation of being undressed to wake up & have a good feed.

    It's only the beginning of many things we have to nudge them into doing, even when they don't like it!

    I can't comment on mucus, because it was not an issue for us, but I'm sure one of the other girls will pop in & help you out.

  16. #124

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    Hi all,

    just wondering what your all doing for National Premmie Day which is 12th June?
    There is something on up the central coast NSW but dont think i can make it up there.
    I'd like to do something but dont know what! There is a calender of events on prembaby website but most of it is in other states not Sydney

  17. #125

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    Ohh, i didn't even know about National Premmie Day! I'll have to look into it!

  18. #126
    sweet-bear Guest

    Default really is there a national premmie day

    wow i didn't know that, i was at the hospital last week where charlie was born and there was nothing there about it, might have to google it to see what comes up,

    how is everyone and their little bundles of joy?

    charlie turned 15months yesterday and is doing well, well apart from the C.B.S.A but we are getting there

    oh and if there are any mums here that are from brisbane and would like to set up a mothers group please email me [email protected]

    hope you are all having a wonderful weekend

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