Heart Children roll call

ok, maybe we had 2 last year then I cant remember, strange they didnt mention that when I phoned

Im pretty sure I will have one too, and I think DH will now we have had a chat - but Im still not 100%

Jake had the 2 shots last year. We have been meaning to take him but haven't got around to it yet - better do that next week. We want to get Morgan done too, cos shes starting daycare in june and Jake got so sick that first few months.

I went to the first west akl heart babies coffee morning this morning. There was about 7 of us there. Very nice to meet others who have been thru similar things. All the stories were a little different, but many similarities too. They are doing them once a month I think, so I'm going to try and keep going even though I've just started back at work parttime - cos I think it will be nice for Jake to know some other "heart kids" as he gets a bit older and has more understanding about his scar/heart.

I've only just found this thread and I've been on ohbaby for awhile now My oldest son is a heart child (he's almost 9) and he has ebsteins anomaly. He had surgery last february , this pic was taken 7 days after surgery.



I haven't read all of the posts but I will do that tomorrow but right now I have to go to bed cos I also have a 3month old.

yea he did amazingly well, we went home after 10days but then got rushed back because he had fluid around his heart

Hi there ladies, haven't been on the forums for ages but found this. It's so awesome to see so many happy smiling little people despite what they have had to go through, your stories are all amazing.

We are in the middle of finding out what exactly Miss Paris has, we have been referred to the starship team next time they are in Palmy (so who knows when that'll be...). Paris is really only mild compared to your little guys and girls.

For us it started when she was about 15 mths, the doctors picked up a murmer at a chance visit, of course the next time it wasn't there, sometimes it was, sometimes it wasn't (I think it depended on the ability of the doctor as we attended a group medical centre so was quite rare to have the same doctor) I would usually ask them if they heard it as I was starting to get worried about it and how no-one seemed to be communicating about it in their notes etc obviously.

Finally at 3 years, we had a wonderful doctor who listened and took note of my worries and said that no, by 3 years there should definately not still be murmers etc, and he referred us up to the hospital.

So of course we had our first visit and they were pretty convinced that it was likely just a wee small Vsd, but sent her off for ecg, echo and chest xrays
we were given the initial diagnosis of biscuspid aortic valve with mild regurgitation.

She had been kinda sickly just before that ad for a long time after too she was sick with constant chest infections and asthma, she would pick up a wee small snuffle and within 24 hours she was sick with a raging infection. We moved houses and that made a alot of difference but she still gets sick quite easily.

we have since had only 2 more paeds appointments to monitor growth etc, however at her last one at 6 yrs her paed had one listen, took her blood pressure and said "ok, we won't see her now till she's 10".

I was kinda concerned really at how he could listen once, and just say that it was no different from when she was first diagnosed, considering at the in between appointment he hadn't even seen her. Especially since she has been steadily getting more tired, and has begun having "white" periods where if she's running about with her sister and being crazy, she will go horribly pale all of a sudden and look like she's going to flake. So being a nurse, having a bit more knowledge than i initially did, and knowing the paed thru work, I pushed for an echo and I am so glad that I did.

They now aren't even sure what is going on with her. During the echo the cardiologist couldn't even figure it out, what they initially thought was bicuspid aortic valve, they aren't sure now if it is, it may actually have 3 cusps, they can't tell for sure, however it has worsened in terms of regurgitation, "domes" out with each beat and flaps about in the breeze before closing down again. So again, we are just waiting for an appointment and the hope of getting some answers.

It's crazy as she does just get sick so quickly, I mean she's healthy in between, but doesn't take much for infections to take hold for her. The end of last term saw her only at school for 4 days out of 3 weeks and she spent the school holidays recovering as somehow she'd gotten double ear infections, popped her eardrum and got a raging UTI (which we hadn't gone about, but just found by chance while testing for all possibilities as they were wondering if shehad glandular fever). We are beginning to notice mre now the difference between her and her younger sistertoo. They both really enjoy taking part in triathlons and she is finding now that her little sister passes her easily. She wants to move on to the big kids ones next year with her 7 yr old age group, but she struggles with doing 300m run, 600m bike and 1 width of the learner baby pool.. I really don't think she will be able to move up and hate that she'll feel left out.

argh, just want some answers, I hate not knowing what's going on.

Edited by mum2paris

It has been pretty muddly indeed. Will definately keep you all updated, am glad this thread got started up, I tried to start one up a few years back when Paris was little but not many people around then.

Is anyone else here doing the heart stopper challege? I get a team together each year from the neonatal unit where I work. Have posted in the general section about it. Here

Mum2Paris, did you use to work in the neonatal? My DS was a premmie and I can't tell you how wonderful the NICU/SCBU nurses were to us. You guys do an amazing job!

What perfect timing Milla starting kindy and bubs arriving Milla should be well and truely settled before bubs arrives! Rex won't be starting kindy until at least the beginning of next year

What a horrid teacher! heart condition or not no child should be made to do that!
Its great he is so well, denial is fine, you obviuosly take note when you need to. I have met some very pretencious little madams on the ward, whose parents spend far to much time on their condition. I prefer to let Milla be Milla, I think if I get to concerned about the heart kid thing, thats all she will ever be and that is definately not what defines her as a person
She is definately ready for Kindy, its only 3 hours twice a week to begin with then two 6 hour days when the new baby is here but yeah she will love it

At least rex will be funded Nikki, its not cheap when they are under 3 and we get no assistance.
They sound like they are going to take her child and disability allowence away too (which totally pi**es me off) how sick do you have to be!!

better go I can here the little monster stirring

Take care

I never seem to get the emails notifying me of replies to this thread - I have clicked on watch this thread countless times!  I keep dropping by to see if any new posts - this time there are heaps! yay!

Welcome Limochick  and mum2paris  

We are going to do the collection as well at Westcity - on Saturday 29th.  Nikki what mall are you doing it at? 

Thats awesome that you are doing the heart stopper challenge mum2paris!!  And what a fantastic amount of money you raised raspberry jam!!

We went to the Heart Children Auckland Family Day last weekend at Chipmunks - Roman thoroughly enjoyed himself, tired himself out with all the playing - he was go go go!

Cool that Milla is looking forward to kindy - Roman enjoys his days there - almost every day he comes home with paint on him and stories (via the teachers of course!) of the fun activities he did

Why are they taking away her child & disability allowance??!!!

Last time when we were at the heart clinic in March, we were told he was doing well and won't need to come in for 6 months - just got a appointment letter to come in on the 2 June............hmmm hope everything is ok....he had a blood test (they took heaps of blood ) and run countless tests for immunity issues as he gets sick a lot and is classed as "failure to thrive" (arrgh I dislike that term) - he is developing very well and everything, but is small for his age.