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Felicha1 
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Joined: 20 February 2011
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 Posted: 04 October 2011 at 12:52pm |
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Hey erinalba I hope they can get to the bottom of why this is happening to your daughter and I hope it is nothing to serious. I too am waiting on a holter monitor test for myself, which I'm waiting 2 months for it seems like forever but it's really not. Good luck :)
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Nikki
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Joined: 02 October 2003
Location: West Auckland
Points: 2279
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Posted: 04 October 2011 at 8:41pm |
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Welcome to the new people. I'm so sorry to hear about your daughter erinalba. Hopefully you will get some answers soon. We can all relate on some level and are here for support.
Good luck for the tests Felicha1 and erinalba. and Limochick!!
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DS (5yrs) and DD (3yrs)
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Limochick
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Joined: 29 September 2008
Location: Mount Maunganui
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Posted: 04 October 2011 at 8:42pm |
I'm so frustrated, Tim was supposed to ring me today to tell me if my oldest son needs surgery and he hasn't!! I realise they are really busy but patience is not my strong point 
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Nikki
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Location: West Auckland
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Posted: 04 October 2011 at 8:51pm |
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I would be frustrated too!! (I'm not patient either though, and hate being mucked around, especially when its regarding something so important). Can you try to call them tomorrow? I'm sure they will understand your concern / impatience!?
Becki -- I was going to add before -- yes we are doing good now thanks. My heart bub is 4 and like limochick I live in denial between checks (which have stretched out to 18-24 months now so its been a while). He is almost due for a check so getting a little nervous, as there is a small chance of more surgery as his heart grows --- but generally he is a normal active healthy big 4yr old. and apart from the scars you would have no idea.
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DS (5yrs) and DD (3yrs)
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Raspberryjam
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Joined: 07 November 2007
Location: north shore
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Posted: 04 October 2011 at 9:56pm |
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You have such beautiful children Nikki, you would never guess your boy has had anything wrong ever!
Grrr Limochic - I would have phoned already!
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ClaireSword
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Joined: 15 April 2011
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Posted: 05 October 2011 at 8:44am |
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erinalba - sorry to hear your having a tough time, i hope it all works out. my son has Tetralogy of Fellot - you can find me on FB if you want, Claire Sword :)
Limochick - grrrr i hate it when that happens and they dont get back to you, making you worry!
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Nikki
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Posted: 06 October 2011 at 8:35pm |
Awwww, thanks RJ. I think they're cute too, but I'm biased! hehe.
Yeah - apart from the napping til he turned 4 and the scars he seems fine.
Any news Limochick?
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DS (5yrs) and DD (3yrs)
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Limochick
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Posted: 06 October 2011 at 9:34pm |
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Oh yes sorry I forgot to update here, Tim rung yesterday afternoon and Thomas won't have to have surgery just yet. They will do a repeat echo next year and go from there. I'm happy to have that not happening so then we can just deal with Quin!!!!
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Limochick
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Posted: 07 October 2011 at 10:21am |
I just found out that they are looking at scheduling Quins surgery for the week of the 13th November. I've just sent his pre-admin forms in and it's all seeming very real now 
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james
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Joined: 01 January 1900
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Posted: 07 October 2011 at 10:41am |
Limochick big hugs hun 
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erinalba
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Posted: 07 October 2011 at 12:09pm |
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Thanks for all your kind words. Briannah has completed 2 days on the Holter monitor and we returned it this morning. So now we just play the waiting game for the results.
Limochick - great news about Tom and hugs about Quin.
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Nikki
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Posted: 08 October 2011 at 8:58pm |
Great news about Thomas Limochick, but hugs re Quin. 
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DS (5yrs) and DD (3yrs)
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Raspberryjam
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Posted: 25 October 2011 at 1:02pm |
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How is everyone?
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Limochick
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Posted: 25 October 2011 at 5:28pm |
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We are doing pretty good just waiting on exactly what dates Quin will be in starship at this stage it is looking like the 12th November. How is everyone else??
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Kumara77
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Joined: 18 May 2011
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Posted: 26 October 2011 at 7:05pm |
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Edited by Bee_ - 26 July 2016 at 10:39am
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fire_engine
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Posted: 26 October 2011 at 8:58pm |
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Bee, my boy was 3 months when he had his surgery so we just kept BFing (had about 3 days of expressing). There were quite a few newborns in PICU and HDU with us who had surgery in the first couple of days after birth. Their mums all expressed and were starting BFing within a couple of days of surgery (dependent on recovery obviously). I found the staff on the ward were really supportive of whatever we wanted to do - we actually introduced a formula feed while we were there so that I could sleep and the nurses could give it - but they also got me a lactation consultant to talk things through with. THey supplied all the expressing equipment and had rooms on the ward for expressing.
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Mum to two wee boys
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Nikki
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Posted: 26 October 2011 at 9:42pm |
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We are good. Morgan has to go back for more tear duct surgery so we were back at the eye clinic at hospital the other day, and back on the waiting list ... but thats another (not heart related!) story, haha.
I breastfed Jake but we didn't find out he was in heart failure til he was 3 weeks old, so BFing was well established by the time I got to hospital with him. they got me to express in between feeds for tube feeding (he wasn't gaining any weight) so I felt like a freakin cow off to the milking sheds every 3 hours and feeding every 3 hours! (Yes day and night I was feeding / expressing every 1.5hrs! it was crazy and I do kinda understand why some mums end up giving formula in that situation). He was tube fed in intensive care and the HDU and then second day on the ward after surgery he was back to BFing, so about 5 days of just expressing post-surgery. He was a great feeder so I had no issues (they warned me some do after a while of not BFing post surgery but he was 6wks old by then and loved his feeds so very keen to get back to the boobs!). I found the staff very supportive of your feeding method no matter what it was (unlike the maternity wards who are very pro-BFing and anti-bottles).
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DS (5yrs) and DD (3yrs)
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Limochick
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Posted: 27 October 2011 at 11:16am |
Bee - I don't talk to alot of people and I'm not part of heart children in our area. I'm not really sure why but I live in denial alot of the time because if you can't see it it's not there iykwim That's great that there is nothing new and good luck with everything. I lived in Waikanae and delivered in Wellington with my oldest (my 1st heart child) and it was an awesome experience they were so helpful and kind!! I expressed and breastfed
Fire engine - we did the same thing cos you really need that sleep in the early days!!
Nikki - good luck for the tear duct surgery and I hope it's not a long wait!! I can't imagine what it's like to have a child go into heart failure that must have been horrible and scary 
I got the dreaded phone call from Starship this morning. Quin has been booked for an MRI and echo on the 14th Nov and then surgery on the 16th!! I'm scared and nervous and just want it over with!!
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james
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Posted: 27 October 2011 at 2:09pm |
hugs limochick lots of luck and just try to breath 
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High9
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Posted: 27 October 2011 at 3:46pm |
Hi, not sure if I am in the right area or not but just wondering if anyone has any experience with PDA - Patent Ductus Arteriosus? My daughter was diagnosed with a heart murmur (innocent) a couple of months ago. About 3 different doctors 'heard' it. First in ED at Wellington hospital and then again about 2-3 weeks later at our local GP by a newbie doctor who wasn't sure if he was imagining it or not... And then again by a 3rd doctor who said it was just innocent. But today at her paed appointment for something else the Paed thought she may have this as it doesn't sound like a normal heart murmur...
Any help/advice/tips would be appreciated!
We;ve been referred for an echo/ultrasound but that will be around Xmas/New Years and he's mentioned possibly going up to Starship.
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