Heart Kids Week!
Printed From: OHbaby!
Category: Have A Baby?
Forum Name: First baby? Second or more?
Forum Description: Want help? Need support? Want tips? Men and women share advice and tips in this supportive community
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=26639
Printed Date: 27 April 2024 at 3:33pm
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Topic: Heart Kids Week!
Posted By: Katie_R
Subject: Heart Kids Week!
Date Posted: 20 May 2009 at 7:43pm
Just thought I would remind everyone Heart Kids Week is coming up very soon 
I also thought it might be a nice excuse to see if there are any other heart kids out there that I haven't 'bumped into' yet! 
. . . We are hoping to get Ash's second surgery done next week - this will be the fourth date in the last few months as previously it has been put off because of his blood count and now this week they are full. We might be spending Heart Kids Week in the Childrens Heart Ward!! ------------- 
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Replies:
Posted By: fire_engine
Date Posted: 20 May 2009 at 8:45pm
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Oh man, hope you get it soon!
As most of you know, Daniel's a heart kid - aortic coarctation, bicupsid aortic valve, left ventricular hypertrophy and now aortic stenosis (plus "at risk of subaortic stenosis" according to the report I finally received today). Nothing compared to most heart kids, but still is at the back of our minds all the time. Who else is out there? ------------- Mum to two wee boys |
Posted By: mum2paris
Date Posted: 20 May 2009 at 8:47pm
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Hi there Katie....
I posted something up the other day in conjunction with it... just trying to get people to sponsor me in the heart stopper challenge for heart kids week. If you don't mind me asking, what has Ash got? Paris has a bicuspid aortic valve with some reguritation at this point so fairly mild really but we are just starting to notice her getting a bit more tired at things she used to cope with well, swimming lessons being one of those things. Which operation(s) has your little person already had and what's coming up? good luck for next week anyways, good to find someone else supporting the cause. ------------- Janine and her 2 cool chicks, Paris & Ayja 
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Posted By: Katie_R
Date Posted: 21 May 2009 at 7:40am
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Oh sorry I missed your post Mum2paris! I hope you are getting lots of sponsors Maybe you could put a link to your thread in here too?
I made a little http://asheart.shutterfly.com/ - webpage to keep track of all of his photos and there is a bit of information on there about his heart . . . . but it is pulmonary stenosis, tricuspid stenosis, right ventricular hypertrophy and right ventricular hypoplasia. . . . there are some new things that have come up in the last few months with his right pulmonary artery and right atrium. But they haven't made the list yet.hehe. Again it's not the best problem in the universe, but compared to some other heart kids he is very lucky! And cut and pasted from that page . . . Ash has had a Balloon Atrial Septostomy + Balloon Valvotomy at 15 hours old. Then a Modified BT Shut Insertion at 17 days and home at 1 month. He now has a Blocked BT Shunt and we are waiting for Bi Directional Glenn + Pulmonary Valvotomy + Aterial Septectomy + RPA Plasty also a Possible Shunt. Sorry to hear that Daniel has a new added risk! I sometimes hate those reports, there always seems to be something new added that you had no idea about! Does Paris have anything planned? That must be worrying that she is starting to struggle. -------------
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Posted By: mum2paris
Date Posted: 21 May 2009 at 10:07am
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no, hers is fairly mild really. most likely to really take impact as she gets older etc. We are due back at the peads this year in a few months so will see where we go from here. Basically they're just monitoring her. her growth is fairly ok, height is good for her age, just a little skinny really. last weight was 16kgs at 5 &1/2, ------------- Janine and her 2 cool chicks, Paris & Ayja
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