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  1. #1
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    Default DD diagnosed with ASD......

    Happy New Year to everyone!!

    Hi, my name is Nelle and in December 2012 my almost 5mo daughter was diagnosed with Atrial Septum Defect. Her name is Emelia and ever since she was born she has had feeding and weight gain issues. At the age of 3 weeks on her third admission to hospital a senior PAED heard a murmur that he said may or may not have been anything or have anything to do with her feeding and weight issues but thought it best to have it checked out. At almost three months Emelia had her first echo but nothing was able to be ruled out as she was so young and quite small for her age. She weighed 3250g at birth. We went back at 5mo to have a repeat echo and to my suprise and that of our paed my dd was diagnosed with a moderate ASD as well as a smaller ASD just below the larger one. Her mitral valve has prolapsed and she has mitral regurgitation as well as mild to moderate tricuspid regurgitation. Also the right side of her heart is enlarged and not functioning properly. I did my research and decided i wasn't going to stress until the doctors told me her condition was no longer stable. They told me what to keep an eye out for and if anything in her daily routine or habits changed to bring her back to the hospital. Feeding and weight gain has been her biggest problems but in the last three weeks as she approaches 6 months old (next week) her milk intake has improved but so has her fatigue she sleeps 20 hours most days. Miss Emelia is the happiest little camper (with a serious emphasis on little lol) andto look at her other than her small size you qould not know she was sick.

    Up until today i have not stressed about her condition (bit proud of myself actually as i am a bit of a stress merchant sometimes) and have just carried on as normal looking forward to her first christmas but then things took a turn for the worst!! i swear to god i must have killed a whole family of china-men!!!! Three days before xmas i was involved in a nasty almost head on MVA that was not my fault but that of the teenage drunken idiot driving a car he had stolen. I remember little of the accident other than the head lights coming towards me and i'm told by my passengers (im a taxi driver) that i swerved otherwise it would have been a full headon MVA with a mini van sporting a bull bar travelling at approx 80km hr versus my 50-55km hr. Still rather shook up and in quite a bit of pain but managed to walk away with only a compressed vertabrae, lots of soft tissue damage and some wicked bruises. So i've been able to spend more quality time with my girls than usual and while my big girl bella is thriving my baby is not. in one week she will be six months old and even without taking her to visit the health nurse i know she hasn't put on any weight more likely lost weight so she has now in the last 4 weeks completely disappeared off the weight for age charts that she has been clinging to since birth. She started on the 25% line and by the time she was 3mo was sitting on the 10% line which we have continued to cling to for the last couple of months. We have also started solids which so far has had no real impact (i was hopeing that solids may have been her saving grace). To stay clinging to the 3% line she would need to have gained atleast 400g in the last 3 weeks, we struggle normally to gain 50g a week. unfortunately this is one of the things that our paed told me to look out for and to bring her back to the hospital.

    We have an apt with PAED in 3 weeks and the cardilogist 4 weeks after that but i honestly don't think we are going to be able to wait that long. Now i am genuinely scared as to what may happen as nothing myself or the doctors are doing seems to help with her weight and it is now impacting her heart condition and vice versa. I also wonder whether having her heart condition "fixed" will even help wit the weight side of things at all.

    Sitting here writing this having a bit of a cry which i haven't allowed myself to do up til now and absolutely dreading getting my baby weighed and out impending trip back to the hospital tomorrow. Not sure what im after from you all by writing this maybe just having vent at the injustice of it all and wondering why this is happening to my family (several members of my family have been diagnosed with cancer and other erious illness in the last 3 months)!!!

    If anyone out there in bubhub land has had a similar experience and would like to share good or bad please do.......

  2. #2
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    sorry for rambling but i needed to get this off my chest as i don't really have a great deal of support other than my mum who is quite unwell herself and my dad. Yes i have friends but at the moment am feeling very alone

  3. #3
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    Default DD diagnosed with ASD......

    I don't know anything about ASD but I wanted to send you some hugs & love. What tough time you're having!!!! xxx

  4. #4
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    I just wanted to send you and your girl a hug. I have no experience of what your going through but it sounds like you are having a very tough time. You sound like an amazing mum and a strong one. Allow yourself to cry , it's bloody not fair . I hope your peadiatrician can help xxx big hug .

  5. #5
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    Default Re: DD diagnosed with ASD......

    my boy was diagnosed with a large vsd and small asd at 5mths. we chose to have it repaired asap as the research i studied said it would not repair itself as it was too large and he would get worse. in the month we waited for his op he lost weight even with all the meds he was on. there is no doubt in my mind he would have kept deteriorating if we chose to wait. before surgery he would drink a max of 30ml and nap constantly but never for any length as he would wake hungry again. within a week of his op he was up to 100ml and by 3 weeks 200ml. he is now on the weight scale he gained 3kg within a month of op and is defiantly happier and meeting milestones. I am thankful everyday we chose the have the surgery asap as it was the best decision for our son and our family.
    Only you know what is best for your family. We went through westmead and our cardiologist was Dr Scholler (who also gave us the wait and see option) and surgeon was Dr Winlaw and his assistant. surgeon was amazing, he had open heart surgery on a wed and home by Monday!!
    Good luck it is the hardest thing we have ever done but had such a great outcome for our baby :-)

    Sent from my GT-I9100 using BubHub

  6. #6
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    .
    Last edited by lolly137; 17-09-2015 at 19:34.

  7. #7
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    Default Re: DD diagnosed with ASD......

    Hardly a scar 4 months on and finally a little chubby!

    Sent from my GT-I9100 using BubHub
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  8. #8
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    Default Re: DD diagnosed with ASD......

    2 days after

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  9. #9
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    Thanks for the support everyone it is much appreciated

    Kylie231 - so pleased for your family that your bubba has bounced back and is looking absolutely fabulous I must say. My daughter has a moderate ASD and a smaller one and the doctors here have taken the wait and see attitude, for now I'm ok with that as her symptoms are only minor. At the moment she is in hospital, was admitted late last night as I'd had some concerns about her symptoms. 3 days before Xmas I had a nasty car accident so I have been home 24/7 and was just a bit worried about the racing heartbeat she was sometimes getting and her fatigue. This is our 3rd admission since birth, the first two were mainly about her poor feeding and weight gain. She has struggled with her feeding and like your son only having small amounts 40-60ml per feed but she was also sleeping for hours and was very hard to wake up. With much perserverance over several months I have managed to get her drinking between 120-160ml per bottle but it takes an hour sometimes as she needs to rest when drinking. I can't fault the doctors they have taken excellent care of her

    Have just had a consultation with a Dr Nitin who is our consultant for this visit which has turned out to be a good thing. dr Nitin is a consultant pediatrician who is in training to be a Paediatric Cardilogist too. He believes that her holes in her heart due to their moderate size have nothing to do with her feeding issue and her fatigue and that there is something yet to be diagnosed going on. Currently waiting for Emelia to have a chest xray and then to go to sleep so she can have an EKG and then we can go home. May have to travel down to Hobart in the next couple of weeks to see the cardiologist.


 

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