OHbaby! Forums : Heart Children roll call https://www.ohbaby.co.nz/forum/ Copyright (c) 2006-2013 Web Wiz Forums - All Rights Reserved. Fri, 01 May 2026 11:23:19 +0000 Wed, 30 Oct 2013 15:58:29 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 12.05 360 https://www.ohbaby.co.nz/forum/RSS_post_feed.asp?TID=31320 <![CDATA[OHbaby! Forums]]> https://www.ohbaby.co.nz/forum/forum_images/web_wiz_forums.png https://www.ohbaby.co.nz/forum/ <![CDATA[Heart Children roll call : Hi Rheenz1. I don&#039;t think...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852324&title=heart-children-roll-call#5852324 Author: aims_one
Subject: 31320
Posted: 30 October 2013 at 3:58pm

Hi Rheenz1. I don't think people use this forum much now as there is a closed group Facebook page instead. Everyone on there is really supportive and great for advice/info. Let me know if you want to join. I'd just need to temporarily facebook friend you, and then can add to the group.
Cheers
Amy]]> Wed, 30 Oct 2013 15:58:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852324&title=heart-children-roll-call#5852324 <![CDATA[Heart Children roll call : Hi, we have a little boy, about...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852322&title=heart-children-roll-call#5852322 Author: rheenz1
Subject: 31320
Posted: 30 October 2013 at 3:43pm

Hi, we have a little boy, about to turn 1 that has pulmonary artresia (sp), he's had two major heart surgeries and due to have his fontarn done around 3 years of age. Growing okay, and doing well so far. Would love to hear from other mums in the same/similar situation. Thanks :)]]> Wed, 30 Oct 2013 15:43:30 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852322&title=heart-children-roll-call#5852322 <![CDATA[Heart Children roll call : Thanks Limochick! Baby (he or...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850044&title=heart-children-roll-call#5850044 Author: Keleho
Subject: 31320
Posted: 03 October 2013 at 9:28am

Thanks Limochick!
Baby (he or she, we kept it a surprise :P ) is still in my belly at the moment, Im just shy of 21 weeks (found out about things last week at the anatomy scan).]]> Thu, 03 Oct 2013 09:28:55 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850044&title=heart-children-roll-call#5850044 <![CDATA[Heart Children roll call : Hi Keleho, I&#039;m so sorry to...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850037&title=heart-children-roll-call#5850037 Author: Limochick
Subject: 31320
Posted: 03 October 2013 at 8:17am

Hi Keleho, I'm so sorry to hear about your sons diagnosis. How old is he?? I will send you a pm on here so then you can join us ]]> Thu, 03 Oct 2013 08:17:42 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850037&title=heart-children-roll-call#5850037 <![CDATA[Heart Children roll call : Does anyone still come in here?We...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850030&title=heart-children-roll-call#5850030 Author: Keleho
Subject: 31320
Posted: 02 October 2013 at 11:04pm

Does anyone still come in here?
We found out last week that our #3 has Tetralogy of Fallot. Heading to Auckland for a CTG in a couple of weeks to determine the extent and talk over what happens next with the drs, so early days and rather daunting at the moment. Would love to join the facebook group ]]> Wed, 02 Oct 2013 23:04:07 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850030&title=heart-children-roll-call#5850030 <![CDATA[Heart Children roll call : Sure, send me a friend request...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5807301&title=heart-children-roll-call#5807301 Author: Nikki
Subject: 31320
Posted: 25 July 2012 at 8:49pm

Sure, send me a friend request and I will add you.]]> Wed, 25 Jul 2012 20:49:21 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5807301&title=heart-children-roll-call#5807301 <![CDATA[Heart Children roll call : hi, could i be added to the group...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806972&title=heart-children-roll-call#5806972 Author: worm28
Subject: 31320
Posted: 23 July 2012 at 1:57pm

hi,
could i be added to the group please, my girl has a asd]]> Mon, 23 Jul 2012 13:57:10 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806972&title=heart-children-roll-call#5806972 <![CDATA[Heart Children roll call : And Amy :) ]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806904&title=heart-children-roll-call#5806904 Author: Nikki
Subject: 31320
Posted: 22 July 2012 at 10:02pm

And Amy :)]]> Sun, 22 Jul 2012 22:02:17 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806904&title=heart-children-roll-call#5806904 <![CDATA[Heart Children roll call : Cheers Nikki. Request done. ]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806903&title=heart-children-roll-call#5806903 Author: aims_one
Subject: 31320
Posted: 22 July 2012 at 10:00pm

Cheers Nikki. Request done.
]]> Sun, 22 Jul 2012 22:00:57 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806903&title=heart-children-roll-call#5806903 <![CDATA[Heart Children roll call : Added you Sarah :) ]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806901&title=heart-children-roll-call#5806901 Author: Nikki
Subject: 31320
Posted: 22 July 2012 at 9:54pm

Added you Sarah :)]]> Sun, 22 Jul 2012 21:54:05 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806901&title=heart-children-roll-call#5806901 <![CDATA[Heart Children roll call : Yep, send me a friend request...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806899&title=heart-children-roll-call#5806899 Author: Nikki
Subject: 31320
Posted: 22 July 2012 at 9:48pm

Yep, send me a friend request and I can add you (you need to be friends with someone on the page for them to add you).

Assuming you're Sarah dear_albie? ]]> Sun, 22 Jul 2012 21:48:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806899&title=heart-children-roll-call#5806899 <![CDATA[Heart Children roll call : Nikki - would you be able to tell...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806884&title=heart-children-roll-call#5806884 Author: aims_one
Subject: 31320
Posted: 22 July 2012 at 8:32pm

Nikki - would you be able to tell me the facebook page too?

Thanks]]> Sun, 22 Jul 2012 20:32:26 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806884&title=heart-children-roll-call#5806884 <![CDATA[Heart Children roll call : Hi dear_albie .... are you on...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806881&title=heart-children-roll-call#5806881 Author: Nikki
Subject: 31320
Posted: 22 July 2012 at 8:22pm

Hi dear_albie .... are you on facebook? We have a group on there now where most of us post, so if you want to be added add me as a friend and I'll add you to the group( Nikki Davy )
And may be best to send a message so I know its you!]]> Sun, 22 Jul 2012 20:22:52 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806881&title=heart-children-roll-call#5806881 <![CDATA[Heart Children roll call : The operation has been put off...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806699&title=heart-children-roll-call#5806699 Author: dear_albie
Subject: 31320
Posted: 20 July 2012 at 9:03pm

The operation has been put off again - the third time. Hard work this waiting as I really feel like our life is on hold till we get on the other side of it. Do any of you keep blogs of your lil' ones journey? Ours is http://mrwrigglesworth.wordpress.com
Anyone else due at Starship anytime soon? ]]> Fri, 20 Jul 2012 21:03:01 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806699&title=heart-children-roll-call#5806699 <![CDATA[Heart Children roll call : Hi there NZ Heart Mamas STOKED...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5805087&title=heart-children-roll-call#5805087 Author: dear_albie
Subject: 31320
Posted: 07 July 2012 at 2:41pm

Hi there NZ Heart Mamas

STOKED to find this group - have found quite a few heart mums groups on Facebook, but they all seem to be based in the States. Its nice to have a group who know all about Starship, PICU and the joys of 23B!
Albie is 16 months and has TGA, PS, SPS and a VSD. He had a BT shunt placed last April and is due for a Rastelli operation the week after next. Its open heart. Gulp.
Is there anyone here who has had a kid have a Rastelli or knows of anyone? I have found one family in Hamilton and its so nice to know what their experience was. I know everyone is different, but still nice to know others have tread our path before us.
]]> Sat, 07 Jul 2012 14:41:41 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5805087&title=heart-children-roll-call#5805087 <![CDATA[Heart Children roll call : The travel insurance we got included...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799739&title=heart-children-roll-call#5799739 Author: Nikki
Subject: 31320
Posted: 25 May 2012 at 8:46pm

The travel insurance we got included anything other than pre-existing conditions. But yeah, the cardiologist should give you a better idea and hopefully put your mind at ease.]]> Fri, 25 May 2012 20:46:58 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799739&title=heart-children-roll-call#5799739 <![CDATA[Heart Children roll call : Thanks Nikki. The op went well...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799106&title=heart-children-roll-call#5799106 Author: aims_one
Subject: 31320
Posted: 22 May 2012 at 10:19pm

Thanks Nikki. The op went well in that they successfully stretched the valve again and got good readings, but it threw up a couple of other issues which need to be kept an eye on and, in the words of the cardiologist who did the op, she has a 'horrible' valve which he believes will have to be repaired at some stage in the near future. ECHO in a week's time should tell us whether that's the next step or whether we can hold off a few months.
I had heard that some insurers will cover a person for everything except their heart where it's a pre-existing condition, but that other insurers simply won't insure them at all. We don't have plans to travel in the immediate future but were thinking of a trip to Fiji in a year or so maybe, and have family in Aus that may influence some travel too. I'm just trying to get some info now while I'm not under any pressure. Although there's a low risk of her needing any urgent care, there are still some issues which could be a risk requiring intervention and so I think we'd need to be covered. Good idea about asking the cardiologist as surely they've got some knowledge. Will make enquiries when we're back at Starship next week.]]> Tue, 22 May 2012 22:19:12 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799106&title=heart-children-roll-call#5799106 <![CDATA[Heart Children roll call : Oh hi again - I just re-read above...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799105&title=heart-children-roll-call#5799105 Author: Nikki
Subject: 31320
Posted: 22 May 2012 at 10:03pm

Oh hi again - I just re-read above - how did her op go?
hope it went well. I guess with her condition you would need to talk to your cardio, as its completely different to our situation. ]]> Tue, 22 May 2012 22:03:59 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799105&title=heart-children-roll-call#5799105 <![CDATA[Heart Children roll call : Hi aims_one .... our heart bubba...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799103&title=heart-children-roll-call#5799103 Author: Nikki
Subject: 31320
Posted: 22 May 2012 at 9:58pm

Hi aims_one .... our heart bubba (hes almost 5) has been to Fiji, Vanuatu, Oz, Thailand twice and Malaysia. We just got normal travel insurance so he would not have been covered for pre-existing conditions - but as he is on 2 yearly checks now I would assume he would not go downhill so quickly that we had to take him to hospital overseas - so absolute worst case we would have to take a flight home early, and we were willing to take that risk, as its incredibly unlikely. Your child's condition may be different though - so maybe ask your cardiologist for advice?

We did not want to stop our lives or stop him from experiencing travel due to his condition as he is technically "repaired" apart from a small chance of future valve surgery.

I can't help with your other questions sorry. Hopefully someone else knows more??]]> Tue, 22 May 2012 21:58:26 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5799103&title=heart-children-roll-call#5799103 <![CDATA[Heart Children roll call : Hi again. Just wondering if anyone...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5798677&title=heart-children-roll-call#5798677 Author: aims_one
Subject: 31320
Posted: 20 May 2012 at 6:53pm

Hi again. Just wondering if anyone has experience with travelling internationally with children with heart conditions. Does anyone know of an insurance company that covers pre-existing heart conditions? And if travelling to Aus, are they covered under their public system anyway if we're Kiwi citizens? There's a good chance we'll need to travel in the future so just trying to get some info.
Thanks]]> Sun, 20 May 2012 18:53:12 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5798677&title=heart-children-roll-call#5798677 <![CDATA[Heart Children roll call : lol you ;) ]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5796218&title=heart-children-roll-call#5796218 Author: Raspberryjam
Subject: 31320
Posted: 05 May 2012 at 3:37pm

lol you ;)]]> Sat, 05 May 2012 15:37:39 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5796218&title=heart-children-roll-call#5796218 <![CDATA[Heart Children roll call : Good luck Aims one Check...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5795541&title=heart-children-roll-call#5795541 Author: Limochick
Subject: 31320
Posted: 30 April 2012 at 7:34pm

Good luck Aims one

Check out your new ticker RJ ]]> Mon, 30 Apr 2012 19:34:07 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5795541&title=heart-children-roll-call#5795541 <![CDATA[Heart Children roll call : Best of luck aims one xx ]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5795536&title=heart-children-roll-call#5795536 Author: Raspberryjam
Subject: 31320
Posted: 30 April 2012 at 7:15pm

Best of luck aims one xx]]> Mon, 30 Apr 2012 19:15:37 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5795536&title=heart-children-roll-call#5795536 <![CDATA[Heart Children roll call : Thanks everyone for your replies....]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5794813&title=heart-children-roll-call#5794813 Author: aims_one
Subject: 31320
Posted: 25 April 2012 at 10:06pm

Thanks everyone for your replies. Had the ECHO last week and the sedation was a breeze! She didn't even grizzle at not having her usual feeds! She did wake up cranky - as though she was really tired - and i had to breastfeed her while they finished the ECHO and ECG, but went back to sleep about 30 mins later for a few hours, and continued to be quite sleepy over the next day or so but otherwise was all good. Based on the results, they've booked her in for another operation next week - so I guess I'm pleased I know they got good images and could make an nformed decision,
Thanks again.]]> Wed, 25 Apr 2012 22:06:46 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5794813&title=heart-children-roll-call#5794813 <![CDATA[Heart Children roll call : Well to be honest in the scheme...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5791056&title=heart-children-roll-call#5791056 Author: Raspberryjam
Subject: 31320
Posted: 01 April 2012 at 3:09pm

Well to be honest in the scheme of things a little sedation to get good pics of the defect is not too much to ask when it gives the docs a better idea of how to fix her. Long term its probably better than having to go back over and over to get a better picture.
Like the others have said its more of a deep slepp, not that different to the one they give for catheter from what I recall]]> Sun, 01 Apr 2012 15:09:33 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5791056&title=heart-children-roll-call#5791056 <![CDATA[Heart Children roll call : My daughter had a sedated echo...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790232&title=heart-children-roll-call#5790232 Author: WEB111
Subject: 31320
Posted: 27 March 2012 at 3:50pm

My daughter had a sedated echo in January, she was 8.5 months. It was fine I just wrapped her up and she went off to sleep then they did the echo she woke towards the end and tried to 'help' lol by grabbing the wand. She wasn't groggy or out to it though but I think some kids can be grumpy after it. Her appointment was 8:45 so not too long to wait for food. They tried to do an echo at our local hospital when she was about 4 months and it was so hard she screamed and wriggled which made it much more difficult to get good pictures. ]]> Tue, 27 Mar 2012 15:50:36 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790232&title=heart-children-roll-call#5790232 <![CDATA[Heart Children roll call : Btw, please don&#039;t get me...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790223&title=heart-children-roll-call#5790223 Author: aims_one
Subject: 31320
Posted: 27 March 2012 at 3:07pm

Btw, please don't get me wrong about sedation. I'm not against it, I just want to know all the options. Because she's so young, I imagine she'll be super-stressed out in the hours before since she won't be able to feed - which in turn will be hard on her parents! She would usually feed every couple of hours at that time of day so I can't help but wonder if holding her off for sedation would be more traumatising for her than being held on the bed...]]> Tue, 27 Mar 2012 15:07:48 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790223&title=heart-children-roll-call#5790223 <![CDATA[Heart Children roll call : I hadn&#039;t realised what my...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790221&title=heart-children-roll-call#5790221 Author: aims_one
Subject: 31320
Posted: 27 March 2012 at 3:02pm

I hadn't realised what my username was! Shame I can't change it. Anyway, thanks for your reply. At first I was ok with the thought - after all, you have to trust the docs etc are giving the best advice - but part of me wonders if sedation is necessary. Am I just letting them put drugs into her little body unnecessarily? As her parent, shouldn't I be trying everything else first? We really believe the biggest cause of her moving during the ECHO was that it took so long as the guy took ages to get started and then seemed unsure of what he was doing and how to handle a baby. We then had to wait for someone else to come in and check what he'd done. It just seemed unreasonable. We also had a long wait as the nurse never seems to be able to get a blood pressure reading (first appointment she just gave up. - the cardiologist did it in a matter of seconds tho, and second appointment she got 3 different readings and then just used the one closest to her records) - so she'd been awake for well over an hour before we even started the ECHO (her awake time is usually 45mins or so). Are there any alternatives to the sedatives? And what are the chances they'd maybe do the ECHO when we first arrive - and other tests afterwards. Any ideas on how to keep a young baby still (she won't take a dummy). Perhaps feeding from a bottle?
]]> Tue, 27 Mar 2012 15:02:05 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790221&title=heart-children-roll-call#5790221 <![CDATA[Heart Children roll call : ma11man and guest I am so sorry...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790218&title=heart-children-roll-call#5790218 Author: Limochick
Subject: 31320
Posted: 27 March 2012 at 2:48pm

ma11man and guest I am so sorry to hear that your children also have heart conditions!!

ma11man it sounds like you have had a rough ride!! I have not had to go down the mickey button route but I know others that have. I'm sorry I can't be more help

Guest my youngest boy who has a heart condition is always sedated for his echo's it just means that they can get good pictures without the kids getting frustrated. It is only a short sedation not like a general or anything. They are still semi with it, the best way to describe it is that they are having a deep sleep.]]> Tue, 27 Mar 2012 14:48:35 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790218&title=heart-children-roll-call#5790218 <![CDATA[Heart Children roll call : Hi there. Haven&#039;t used this...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790215&title=heart-children-roll-call#5790215 Author: aims_one
Subject: 31320
Posted: 27 March 2012 at 2:27pm

Hi there. Haven't used this forum before but was searching for some answers and came across it. What a great idea! My daughter was born in January and was diagnosed with pulmonary stenosis at 9 days old. She underwent a catheter balloon procedure the following day to stretch it but they couldn't get it to normal size so we're waiting for them to try again in the coming months when she's bigger. She has regular checkups at Starship but at the last one it seems they didn't get a very good ECHO so next time they want to sedate her. She'll be 3 months old. I'm worried about having to sedate her and the effects, let alone not being able to eat beforehand - her appointment is mid-morning. Can anyone provide any insight? Last time we had a trainee doing the ECHO which we found frustrating as it seemed to take longer then previous ones - we had thought our daughter did really well at being still given all the mucking around that went on, let alone the 40min wait to be seen after seeing the nurse. How can they expect such young babies to stay awake for such a long time?! Any helpful hints would be much appreciated!]]> Tue, 27 Mar 2012 14:27:22 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5790215&title=heart-children-roll-call#5790215 <![CDATA[Heart Children roll call : Hi There I am new to this forum....]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5789393&title=heart-children-roll-call#5789393 Author: ma11man
Subject: 31320
Posted: 23 March 2012 at 11:41am

Hi There

I am new to this forum. My daughter Isla was born at 32 weeks( semi planned C Section) She has a heart condition called Left Atrial Isomerism and Hetrotaxy. She has a permanent pacemaker and has had 2 open heart surgerys.
She spent her first 4 months in Intensive Care at Starship. She is now 14 months. She was 02 dependant until 3 weeks ago where we have been liberated from the tubes!!!!

She is tube fed using a Mickey button. I am keen to information share with anyone else having oral adversion issues. Also keen for extra help with her feeding. We are under Waitakere DHB but feel we may need some extra help but am not sure where to start

Kind Regards

Kylie]]> Fri, 23 Mar 2012 11:41:11 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5789393&title=heart-children-roll-call#5789393 <![CDATA[Heart Children roll call : The risk is higher for neonates...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1419785&title=heart-children-roll-call#1419785 Author: Raspberryjam
Subject: 31320
Posted: 03 January 2012 at 12:03pm

The risk is higher for neonates on bypass, I remember that chat. Milla had streaking in her brain tissue - likely as a result of bypass, but it has had no effect on her development - which is the common outcome. ]]> Tue, 03 Jan 2012 12:03:18 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1419785&title=heart-children-roll-call#1419785 <![CDATA[Heart Children roll call : There is always a risk - it&#039;s...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1419708&title=heart-children-roll-call#1419708 Author: fire_engine
Subject: 31320
Posted: 02 January 2012 at 11:17pm

There is always a risk - it's present for oldies who have bypass as well. One reason I'm glad we avoided bypass last time - won't be so lucky next time. I guess I look at it thinking "what's the choice" but it's still not nice to have to think about. ]]> Mon, 02 Jan 2012 23:17:10 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1419708&title=heart-children-roll-call#1419708 <![CDATA[Heart Children roll call : Hi Angelina, I&#039;m not sure...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1419189&title=heart-children-roll-call#1419189 Author: Nikki
Subject: 31320
Posted: 31 December 2011 at 9:13pm

Hi Angelina, I'm not sure if it changed as they get older - but I think the risk is probably lower the bigger they get. It has something to do with the time they have to be on bypass too I think. It freaked me out when they told me, so I definitely remember that part of the pre-op talk!]]> Sat, 31 Dec 2011 21:13:40 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1419189&title=heart-children-roll-call#1419189 <![CDATA[Heart Children roll call : Hi everyone, sorry for some reason...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1418255&title=heart-children-roll-call#1418255 Author: DaisyAngel
Subject: 31320
Posted: 24 December 2011 at 2:15pm

Hi everyone, sorry for some reason my notification of comments in this topic stopped working :( 

Merry Christmas everyone! 

Hi to the newbies :)

Can someone please add me to the group too?  :)  Angelina Newman

Wow the brain damage is new information for me.....I don't remember having that mentioned to us......or is that not a risk as he had his open heart surgery at 4 1/2 months?

]]> Sat, 24 Dec 2011 14:15:13 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1418255&title=heart-children-roll-call#1418255 <![CDATA[Heart Children roll call : .Edited by Bee_ - 26 July 2016...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1418062&title=heart-children-roll-call#1418062 Author: Kumara77
Subject: 31320
Posted: 23 December 2011 at 9:08am

.

Edited by Bee_ - 26 July 2016 at 10:41am]]> Fri, 23 Dec 2011 09:08:36 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1418062&title=heart-children-roll-call#1418062 <![CDATA[Heart Children roll call : Merry Christmas everyone!!! The...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1418021&title=heart-children-roll-call#1418021 Author: Nikki
Subject: 31320
Posted: 22 December 2011 at 9:32pm

Merry Christmas everyone!!!

The only Becki Horgan I found has a girl with a baby in the pic (and a guy) - is that you? I'm Nikki Davy if you want to add me and I can add you to the group. Good luck for Jan hun!!]]> Thu, 22 Dec 2011 21:32:37 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1418021&title=heart-children-roll-call#1418021 <![CDATA[Heart Children roll call : Merry christmas everyone, I hope...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1417916&title=heart-children-roll-call#1417916 Author: Limochick
Subject: 31320
Posted: 22 December 2011 at 11:38am

Merry christmas everyone, I hope all your kidlets are happy and healthy!!!

Beck I just tried to find you but it didn't come up you could try searching me and then I can add you I'm Alicia Gestro and it's a photo of me and my son. It is a very scary and daunting time but you will be in the best place. I wish you lots of luck

I forgot to update you all in here, it turns out my daughter has a heart murmur as well and my other sons ecg has come back abnormal so they both need to have echo's to check for a heart condition. Oh the joy of it all imagine if I ended up with 4 heart kids ]]> Thu, 22 Dec 2011 11:38:09 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1417916&title=heart-children-roll-call#1417916 <![CDATA[Heart Children roll call : .Edited by Bee_ - 26 July 2016...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1417868&title=heart-children-roll-call#1417868 Author: Kumara77
Subject: 31320
Posted: 22 December 2011 at 8:22am

.

Edited by Bee_ - 26 July 2016 at 10:40am]]> Thu, 22 Dec 2011 08:22:54 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1417868&title=heart-children-roll-call#1417868 <![CDATA[Heart Children roll call : The special christmas parties...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405770&title=heart-children-roll-call#1405770 Author: Limochick
Subject: 31320
Posted: 08 November 2011 at 7:10am

The special christmas parties are awesome, I haven't been to one since Thomas was 4. I'd love to go to the Hamilton one cos I don't think Tauranga has one.

Bee - you will surprise yourself with how strong you are for your little baby

Nikki - everything can be so scary in those early days can't it ]]> Tue, 08 Nov 2011 07:10:53 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405770&title=heart-children-roll-call#1405770 <![CDATA[Heart Children roll call : Hey Bee, sorry to scare you with...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405750&title=heart-children-roll-call#1405750 Author: Nikki
Subject: 31320
Posted: 07 November 2011 at 10:35pm

Hey Bee, sorry to scare you with the brain damage talk .. I forgot you were here and how scarey it all is! I freaked at that part when they told me the night before his op. also freaked at the blood transfusion happening with surgery (something I wasn't keen on and hadn't considered would be needed) and also freaked that they gave my 3wk old bubba a dummy when I was anti! But I had no option but to deal with it all, as it was happening whether I liked it or not.

Thanks Limochick -- yeah I was stoked with Jakes results even though we kinda knew he was doing well it was nice to have someone else tell us. I'm assuming they will have to sedate them if they won't stay still?? Don't really want to go through that again unnecessarily but I know the research is for a good cause!!

Thanks Suzie! We got offered tickets for the Xmas party last year thru heart babies (couldn't make it though), but haven't heard anything this year. when is it?]]> Mon, 07 Nov 2011 22:35:40 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405750&title=heart-children-roll-call#1405750 <![CDATA[Heart Children roll call : .Edited by Bee_ - 26 July 2016...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405731&title=heart-children-roll-call#1405731 Author: Kumara77
Subject: 31320
Posted: 07 November 2011 at 9:34pm

.

Edited by Bee_ - 26 July 2016 at 10:40am]]> Mon, 07 Nov 2011 21:34:20 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405731&title=heart-children-roll-call#1405731 <![CDATA[Heart Children roll call : If any of you have children with...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405420&title=heart-children-roll-call#1405420 Author: susieq
Subject: 31320
Posted: 07 November 2011 at 8:22am

If any of you have children with slight developmental delay and are in the auckland area and want tickets for the plays at greenlane that I get through our special needs group or the Special kids area at the Farmers xmas parade or the special kids xmas party please email me suemcgehan@ihug.co.nz or if you want our special needs newsletter]]> Mon, 07 Nov 2011 08:22:08 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405420&title=heart-children-roll-call#1405420 <![CDATA[Heart Children roll call : Nikki - good on you for using...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405396&title=heart-children-roll-call#1405396 Author: Limochick
Subject: 31320
Posted: 07 November 2011 at 7:23am

Nikki - good on you for using your instincts and pushing for your daughter. She would have shown signs that something was wrong eventually.

Wendy I added you as a friend as well

Nikki - how cool that you scored ahead for his age that is great!! Oh and with relation to the no sedation at 6 for the MRI, my son had his done at 7 with sedation ]]> Mon, 07 Nov 2011 07:23:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405396&title=heart-children-roll-call#1405396 <![CDATA[Heart Children roll call : Wendy I&#039;ve just sent a friend...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405375&title=heart-children-roll-call#1405375 Author: Nikki
Subject: 31320
Posted: 06 November 2011 at 9:46pm

Wendy I've just sent a friend request so I can try to add you to the group. :)

high9 - my sister used to work in the cath lab :) Not sure what would have happened if they hadn't found it then - I assume she would start to show signs of going downhill eventually. Jakes was fixed at 6wks as he was having surgery anyway so I didn't know too much about it apart from what they told me (mentioned above). Hopefully you will get an appt date soon.

Limochick - yep theres a 30% chance of brain damage having their hearts stopped for open heart surgery at that age!! When they say damage they mean "brain changes" and not all of it is serious or even will affect them at all. But developmental delays are normal and we were warned of it. Jake was fine and did everything early-ish (rolled at 12wks, crawled at 6mths, pulled up and walked around furniture at 7mths, pushing along toys at 8mths, proper walking 3 days after his b'day, talked really early etc). He had a check as part of the study at 2yrs and scored ahead of his age in all the areas and well ahead in a couple of areas, so that was a huge relief. His brain also showed very little change (MRI before / after and monitored during surgery). Its been a bit of a pain - taking him back for appts etc (the sedation at 4 months for follow-up MRI was HORRIBLE!!) - but if it helps some other little bubbas I'm all for it. Being a scientist how could I say no?!?]]> Sun, 06 Nov 2011 21:46:28 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405375&title=heart-children-roll-call#1405375 <![CDATA[Heart Children roll call : Just want to add the first doctor...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405363&title=heart-children-roll-call#1405363 Author: High9
Subject: 31320
Posted: 06 November 2011 at 9:11pm

Just want to add the first doctor from our clinic heard it in the area where the paed did so paed said he was most likely hearing the same thing if that makes sense?

It's a pretty scary thing to think about though had I not pushed for her to see a paed - what would have happened?

My cousin has a heart baby too. But not sure what her condition is. ]]> Sun, 06 Nov 2011 21:11:40 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405363&title=heart-children-roll-call#1405363 <![CDATA[Heart Children roll call : Hi sorry forgot to come back!...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405361&title=heart-children-roll-call#1405361 Author: High9
Subject: 31320
Posted: 06 November 2011 at 9:09pm

Hi sorry forgot to come back! Umm well the heart murmur wasn't picked up until she went to A&E about 3-4 months ago now but when we saw a gp at our local clinic he thought it sounded in a different area to where A&E said the murmur was so he wasn't sure if he was imagining it or not but a second opinion 2 weeks later from another GP at our local clinic agreed with the doc from A&E. However almost 2 weeks ago now that paed said it sounded different to the kids he gets in with heart murmurs. We got a follow up letter from our appointment, still waiting for an ultrasound and echo but won't know much until then but if it is PDA then they will most likely do catheter insertion to plug it up. She's 20 months. The letter did mention open heart surgery but only as a last resort. ]]> Sun, 06 Nov 2011 21:09:40 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405361&title=heart-children-roll-call#1405361 <![CDATA[Heart Children roll call : Hi, I would be keen to join the...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405324&title=heart-children-roll-call#1405324 Author: WEB111
Subject: 31320
Posted: 06 November 2011 at 6:02pm

Hi,

I would be keen to join the facebook group, my name is Wendy McGeown. I will try and find you on there

I am really interested in the Hearts and Minds study as we have been told all along that we are facing at the least a mild developmental delay at worst severe brain damage. Hoping to get a brain MRI done early next year when we are next at Starship. Molly had a cardiac arrest and 10 minutes of CPR and a couple of other very serious incidents which may have compromised her brain. So far developmentally she is slightly behind but doing better than most doctors predicted

So glad I found this group! I see there is another heart mummy on here with a Truncus baby, although their journey sounds a bit different to ours it is nice to know that her little girl is doing well now

]]> Sun, 06 Nov 2011 18:02:30 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405324&title=heart-children-roll-call#1405324 <![CDATA[Heart Children roll call : I started a facebook group and...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405299&title=heart-children-roll-call#1405299 Author: Limochick
Subject: 31320
Posted: 06 November 2011 at 4:30pm

I started a facebook group and joined those of you who are on my friends list but if you want to join just let me know my facebook name is Alicia Gestro

Nikki - bummer about the 6month waiting list Wow that study would be quite interesting. Do they think early surgeries can affect them??

hi web111 sorry to hear about your little girl

I have to start the organising of what we need to take to starship and what stays at home for the inlaws to bring up, I can't wait lol!!! Will deffinetly all let you know how Quin gets on.]]> Sun, 06 Nov 2011 16:30:10 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405299&title=heart-children-roll-call#1405299 <![CDATA[Heart Children roll call : Welcome WEB111. :) So do I Limochick...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405292&title=heart-children-roll-call#1405292 Author: Nikki
Subject: 31320
Posted: 06 November 2011 at 3:44pm

Welcome WEB111. :)

So do I Limochick -- got a letter yesterday and its another 6 month waiting list for Morgys eyes. also got a letter about the study Jake is in (Early Prediction of Brain Damage after Heart Surgery in Infants --- which they are now calling Hearts and Minds, sounds a bit nicer!) and he has to go back at 6yrs for two developmental/neurobehavioural tests and an MRI!

A facebook page sounds great!! Good idea.

Let us know how Quins surgery goes .....]]> Sun, 06 Nov 2011 15:44:44 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1405292&title=heart-children-roll-call#1405292 <![CDATA[Heart Children roll call : Hi people, I have just found...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1404867&title=heart-children-roll-call#1404867 Author: WEB111
Subject: 31320
Posted: 04 November 2011 at 6:00pm

Hi people,

I have just found this forum, I have a 6 month old heart baby. She has Truncus arteriosus repaired at 8 days old. She also has other complications caused by her heart condition which are, ironically, more concerning now than her heart!

We had a pretty rough time for the first few months like most of you guys from what I have been reading. Nice to find others who have been through the similar things with surgery, Starship stays, weight gain etc.

Hope all your kiddies are doing great!!]]> Fri, 04 Nov 2011 18:00:15 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1404867&title=heart-children-roll-call#1404867 <![CDATA[Heart Children roll call : Nikki I hope this next surgery...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1404852&title=heart-children-roll-call#1404852 Author: Limochick
Subject: 31320
Posted: 04 November 2011 at 4:30pm

Nikki I hope this next surgery is more successful!!

hey girls I was wondering if you were keen to start a heart group on facebook and add people that we know, what do you think??]]> Fri, 04 Nov 2011 16:30:42 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1404852&title=heart-children-roll-call#1404852 <![CDATA[Heart Children roll call : I don&#039;t know too much about...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402889&title=heart-children-roll-call#1402889 Author: Nikki
Subject: 31320
Posted: 29 October 2011 at 9:48pm

I don't know too much about a PDA either High9 but yes you are in the right place. Jake had a PDA but it was the minor issue compared to the other problems. They fixed it while he was in surgery for his other defects. I think they usually either close up on their own (all bubs have that hole when born and it usually closes in a few days) or they do it in the cath lab - still scary but at least not open heart surgery. I'd assume with your daughter being older that its not closing on its own. Wonder why they didnt pick it up sooner. Does she have any symptoms apart from the murmur?

Limochick - good luck with the surgery!!
And thanks re DD's tear duct surgery -- she had it done 7 months ago and is in the unlucky 2% who it didn't work for! I'm not sure how long the waitlist is right now but it was 6 months last time she went in, and 1 month when I had something done recently. Happy to wait til after Xmas to be honest!
When I said heart failure - that was the medical term for what was happening - but he didn't go blue or stop breathing so not that sort of scary. I had to drive straight to starship from the GP, but no ambulance or anything. It was probably more scary the next day when we found out what was really the problem!

Edited by Nikki]]> Sat, 29 Oct 2011 21:48:48 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402889&title=heart-children-roll-call#1402889 <![CDATA[Heart Children roll call : High9 I haven&#039;t had anything...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402190&title=heart-children-roll-call#1402190 Author: Limochick
Subject: 31320
Posted: 27 October 2011 at 4:04pm

High9 I haven't had anything to do with PDA other than hearing about it but if you want to talk to someone I'm here it is a scary prospect but we all understand and know what it feels like ]]> Thu, 27 Oct 2011 16:04:01 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402190&title=heart-children-roll-call#1402190 <![CDATA[Heart Children roll call : Hi, not sure if I am in the right...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402185&title=heart-children-roll-call#1402185 Author: High9
Subject: 31320
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.]]> Thu, 27 Oct 2011 15:46:22 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402185&title=heart-children-roll-call#1402185 <![CDATA[Heart Children roll call : hugs limochick lots of luck and...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402141&title=heart-children-roll-call#1402141 Author: james
Subject: 31320
Posted: 27 October 2011 at 2:09pm

hugs limochick lots of luck and just try to breath ]]> Thu, 27 Oct 2011 14:09:58 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402141&title=heart-children-roll-call#1402141 <![CDATA[Heart Children roll call : Bee - I don&#039;t talk to alot...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402069&title=heart-children-roll-call#1402069 Author: Limochick
Subject: 31320
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!!]]> Thu, 27 Oct 2011 11:16:33 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1402069&title=heart-children-roll-call#1402069 <![CDATA[Heart Children roll call : We are good. Morgan has to go...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401954&title=heart-children-roll-call#1401954 Author: Nikki
Subject: 31320
Posted: 26 October 2011 at 9:42pm

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).]]> Wed, 26 Oct 2011 21:42:25 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401954&title=heart-children-roll-call#1401954 <![CDATA[Heart Children roll call : Bee, my boy was 3 months when...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401934&title=heart-children-roll-call#1401934 Author: fire_engine
Subject: 31320
Posted: 26 October 2011 at 8:58pm

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. ]]> Wed, 26 Oct 2011 20:58:59 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401934&title=heart-children-roll-call#1401934 <![CDATA[Heart Children roll call : .Edited by Bee_ - 26 July 2016...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401877&title=heart-children-roll-call#1401877 Author: Kumara77
Subject: 31320
Posted: 26 October 2011 at 7:05pm

.

Edited by Bee_ - 26 July 2016 at 10:39am]]> Wed, 26 Oct 2011 19:05:09 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401877&title=heart-children-roll-call#1401877 <![CDATA[Heart Children roll call : We are doing pretty good just...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401455&title=heart-children-roll-call#1401455 Author: Limochick
Subject: 31320
Posted: 25 October 2011 at 5:28pm

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??]]> Tue, 25 Oct 2011 17:28:46 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401455&title=heart-children-roll-call#1401455 <![CDATA[Heart Children roll call : How is everyone? ]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401378&title=heart-children-roll-call#1401378 Author: Raspberryjam
Subject: 31320
Posted: 25 October 2011 at 1:02pm

How is everyone?]]> Tue, 25 Oct 2011 13:02:41 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1401378&title=heart-children-roll-call#1401378 <![CDATA[Heart Children roll call : Great news about Thomas Limochick,...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396739&title=heart-children-roll-call#1396739 Author: Nikki
Subject: 31320
Posted: 08 October 2011 at 8:58pm

Great news about Thomas Limochick, but hugs re Quin. ]]> Sat, 08 Oct 2011 20:58:10 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396739&title=heart-children-roll-call#1396739 <![CDATA[Heart Children roll call : Thanks for all your kind words....]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396256&title=heart-children-roll-call#1396256 Author: erinalba
Subject: 31320
Posted: 07 October 2011 at 12:09pm

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. ]]> Fri, 07 Oct 2011 12:09:27 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396256&title=heart-children-roll-call#1396256 <![CDATA[Heart Children roll call : Limochick big hugs hun ]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396214&title=heart-children-roll-call#1396214 Author: james
Subject: 31320
Posted: 07 October 2011 at 10:41am

Limochick big hugs hun ]]> Fri, 07 Oct 2011 10:41:27 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396214&title=heart-children-roll-call#1396214 <![CDATA[Heart Children roll call : I just found out that they are...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396202&title=heart-children-roll-call#1396202 Author: Limochick
Subject: 31320
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 ]]> Fri, 07 Oct 2011 10:21:27 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396202&title=heart-children-roll-call#1396202 <![CDATA[Heart Children roll call : Oh yes sorry I forgot to update...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396095&title=heart-children-roll-call#1396095 Author: Limochick
Subject: 31320
Posted: 06 October 2011 at 9:34pm

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!!!!]]> Thu, 06 Oct 2011 21:34:26 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396095&title=heart-children-roll-call#1396095 <![CDATA[Heart Children roll call : Awwww, thanks RJ. I think they&#039;re...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396063&title=heart-children-roll-call#1396063 Author: Nikki
Subject: 31320
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?]]> Thu, 06 Oct 2011 20:35:44 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1396063&title=heart-children-roll-call#1396063 <![CDATA[Heart Children roll call : erinalba - sorry to hear your...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395281&title=heart-children-roll-call#1395281 Author: ClaireSword
Subject: 31320
Posted: 05 October 2011 at 8:44am

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!]]> Wed, 05 Oct 2011 08:44:17 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395281&title=heart-children-roll-call#1395281 <![CDATA[Heart Children roll call : You have such beautiful children...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395221&title=heart-children-roll-call#1395221 Author: Raspberryjam
Subject: 31320
Posted: 04 October 2011 at 9:56pm

You have such beautiful children Nikki, you would never guess your boy has had anything wrong ever!

Grrr Limochic - I would have phoned already!]]> Tue, 04 Oct 2011 21:56:31 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395221&title=heart-children-roll-call#1395221 <![CDATA[Heart Children roll call : I would be frustrated too!! (I&#039;m...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395191&title=heart-children-roll-call#1395191 Author: Nikki
Subject: 31320
Posted: 04 October 2011 at 8:51pm

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.
]]> Tue, 04 Oct 2011 20:51:50 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395191&title=heart-children-roll-call#1395191 <![CDATA[Heart Children roll call : I&#039;m so frustrated, Tim was...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395188&title=heart-children-roll-call#1395188 Author: Limochick
Subject: 31320
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 ]]> Tue, 04 Oct 2011 20:42:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395188&title=heart-children-roll-call#1395188 <![CDATA[Heart Children roll call : Welcome to the new people. I&#039;m...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395185&title=heart-children-roll-call#1395185 Author: Nikki
Subject: 31320
Posted: 04 October 2011 at 8:41pm

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!!]]> Tue, 04 Oct 2011 20:41:03 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395185&title=heart-children-roll-call#1395185 <![CDATA[Heart Children roll call : Hey erinalba I hope they can get...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395000&title=heart-children-roll-call#1395000 Author: Felicha1
Subject: 31320
Posted: 04 October 2011 at 12:52pm

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 :)]]> Tue, 04 Oct 2011 12:52:05 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1395000&title=heart-children-roll-call#1395000 <![CDATA[Heart Children roll call : Hi erinalba, thats so scary for...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394938&title=heart-children-roll-call#1394938 Author: Raspberryjam
Subject: 31320
Posted: 04 October 2011 at 10:44am

Hi erinalba, thats so scary for you, I really hope they can find out whats going on soon .
The halter will give them loads of info, and it seems as though they are moving pretty fast to help your little one. Although Im sure it feels like its taking forever. It is soo stressful.
I know its easier said than done, but rest assured they will give your girl the best care possible

You are miles from me, but Im always here to chat if you need me

oh and Im on facebook too - Jo Wells -

x]]> Tue, 04 Oct 2011 10:44:03 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394938&title=heart-children-roll-call#1394938 <![CDATA[Heart Children roll call : Thanks Limochick. No she wasn&#039;t...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394880&title=heart-children-roll-call#1394880 Author: erinalba
Subject: 31320
Posted: 04 October 2011 at 7:18am

Thanks Limochick. No she wasn't sedated. They did it urgently between appointments.]]> Tue, 04 Oct 2011 07:18:02 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394880&title=heart-children-roll-call#1394880 <![CDATA[Heart Children roll call : Erinalba - how scary and horrible...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394877&title=heart-children-roll-call#1394877 Author: Limochick
Subject: 31320
Posted: 04 October 2011 at 7:01am

Erinalba - how scary and horrible for you I hope they can figure out what is going on. Was she sedated for the echo?? I've just recently found out that my 20month old has a heart condition as well so I know how horrible it is!! I'm happy to listen when you need support!!]]> Tue, 04 Oct 2011 07:01:27 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394877&title=heart-children-roll-call#1394877 <![CDATA[Heart Children roll call : Hey everyone. I don&#039;t know...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394875&title=heart-children-roll-call#1394875 Author: erinalba
Subject: 31320
Posted: 04 October 2011 at 6:53am

Hey everyone. I don't know yet whether I should be in here, but I need some support. My 20 month old daughter has been in and out of hospital in the last few weeks with episodes of turning blue. They are concentrating on her heart as the cause at the moment, but they don't know what's actually going on. Typically, she hasn't been having the episodes while in hospital, but I think that's because she hasn't been active in there. They've picked up a heart murmur and her chest xray shows her heart is an unusual shape. Echo was fine, although they did say they couldn't complete it because she got so distressed. We're getting a Halter monitor tomorrow in the hopes they can capture what's going on. She was a very active toddler, but now she gets tired so easily. Yesterday I followed her around outside and in the space of 2 minutes she had to stop 3 times and squat down. It's so hard not knowing what is going on with my gorgeous little girl and we're getting so stressed out.

Edited by erinalba]]> Tue, 04 Oct 2011 06:53:00 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394875&title=heart-children-roll-call#1394875 <![CDATA[Heart Children roll call : Nikki - I&#039;m pleased that...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394569&title=heart-children-roll-call#1394569 Author: Limochick
Subject: 31320
Posted: 03 October 2011 at 11:53am

Nikki - I'm pleased that it's not just me that goes into denial then

ClaireSword - I've got some here that we aren't using so I'll take them up with us when we go. I remember thinking that last time we were there lol.

Tauranga hospital rung on Friday and are going to see Quin in the next 2wks just to make sure that he's alright. It worries me that they are worried about him iykwim

Bee - I do think heart children help and we are all here as support as well ]]> Mon, 03 Oct 2011 11:53:52 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394569&title=heart-children-roll-call#1394569 <![CDATA[Heart Children roll call : Limochick - we were at starship...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394558&title=heart-children-roll-call#1394558 Author: ClaireSword
Subject: 31320
Posted: 03 October 2011 at 11:30am

Limochick - we were at starship about 6 weeks ago and YES they still need damned mugs in 23b!!]]> Mon, 03 Oct 2011 11:30:47 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394558&title=heart-children-roll-call#1394558 <![CDATA[Heart Children roll call : Hi Felicha ,Liz was / is our surgeon...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394270&title=heart-children-roll-call#1394270 Author: Raspberryjam
Subject: 31320
Posted: 02 October 2011 at 8:47am

Hi Felicha ,Liz was / is our surgeon too! we love her!

That does suck about the washing machines! and Im think the ward always needs cups, and cutlery and plates!

RE the holland poem, it really helped us back then... these days I dont really think about her being sick, she never does anything to cause me concern, not that Im complacent, I still check hr heartrate etc   when she sleeping sometimes and since she is on aspirin - I dont go a day where its not a part of our life, but really its a non issue - maybe that is being in denial!

Hope your well Bee

]]> Sun, 02 Oct 2011 08:47:41 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394270&title=heart-children-roll-call#1394270 <![CDATA[Heart Children roll call : .Edited by Bee_ - 26 July 2016...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394266&title=heart-children-roll-call#1394266 Author: Kumara77
Subject: 31320
Posted: 02 October 2011 at 8:17am

.

Edited by Bee_ - 26 July 2016 at 10:38am]]> Sun, 02 Oct 2011 08:17:31 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394266&title=heart-children-roll-call#1394266 <![CDATA[Heart Children roll call : Hey all. I found this when I was...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394239&title=heart-children-roll-call#1394239 Author: Felicha1
Subject: 31320
Posted: 01 October 2011 at 11:41pm

Hey all. I found this when I was on google. Hi Claire :)
Have never used this ohbaby forum before.

My son, now 9 months old, was born with T.A.P.V.D (Total Anomalous Pulmonary Venous Drainage) - it was picked up at 9 days old and he had surgery at 10 days old. He had the infracardiac type which was also obstructed requiring emergency surgery. We had Liz as his surgeon and I can't thank her enough for saving his life. We were in Auckland in March after the earthquake so we had a checkup in the health clinic with Tim and he thought in the echo he could see the pulmonary veins narrowing, and his ECG also came back "different, but not bad different" or something like that. Anyway so they scheduled another echo for May in Christchurch but that came back all clear which was a relief and now we will be having another echo in November sometime apparently.

Does anybody else here have a child with TAPVD - I know nobody else.]]> Sat, 01 Oct 2011 23:41:30 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394239&title=heart-children-roll-call#1394239 <![CDATA[Heart Children roll call : I&#039;m in denial between check...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394097&title=heart-children-roll-call#1394097 Author: Nikki
Subject: 31320
Posted: 01 October 2011 at 1:57pm

I'm in denial between check ups too ... unless I see a heart bub ad or someone mentions it.

]]> Sat, 01 Oct 2011 13:57:36 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394097&title=heart-children-roll-call#1394097 <![CDATA[Heart Children roll call : Has anyone been to starship lately??...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394041&title=heart-children-roll-call#1394041 Author: Limochick
Subject: 31320
Posted: 01 October 2011 at 9:09am

Has anyone been to starship lately?? Do they still need mugs?? Also has anyone stayed in the new Ronald Macdonald house and do they limits on how many people in a room??

I'm Alicia Gestro if anyone wants to add me on there, I have some photos of Thomas' surgery on there as well!!

so true about the "normal baby' grief, I go into denial about it quite often until he has his check ups and then it all comes back!!]]> Sat, 01 Oct 2011 09:09:35 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1394041&title=heart-children-roll-call#1394041 <![CDATA[Heart Children roll call : Oh that sucks the washing machines...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1393976&title=heart-children-roll-call#1393976 Author: Nikki
Subject: 31320
Posted: 30 September 2011 at 8:56pm

Oh that sucks the washing machines are gone!

I'm Nikki Davy on facebook if anyone wants to add me.

I cried when I read that Holland story when Jake was diagnosed at 3wks, and I cried again just then. I'd forgotten the part about the pain never going away and the grief.
It is so true that the loss of your "perfect / normal" baby is very real and painful! But I'm sure none of us would ever give out heart bubs back!

That sucks about Thomas Limochick, but good to have a plan for Quin.]]> Fri, 30 Sep 2011 20:56:24 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1393976&title=heart-children-roll-call#1393976 <![CDATA[Heart Children roll call : i &lt;3 that holland story raspberry...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1393846&title=heart-children-roll-call#1393846 Author: ClaireSword
Subject: 31320
Posted: 30 September 2011 at 3:29pm

i <3 that holland story raspberry jam!!
oh just to add to Nikki's bit..they dont have washing machine's now but do have a laundry service (it isnt cheap tho!!) but if your hubby is at the ronald mcdonald house he can be chief washing man!! also, if you have a car, there is a space at the house to park it :)]]> Fri, 30 Sep 2011 15:29:44 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1393846&title=heart-children-roll-call#1393846 <![CDATA[Heart Children roll call : Hi Bee....congrats on being pregnant!!...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1393844&title=heart-children-roll-call#1393844 Author: ClaireSword
Subject: 31320
Posted: 30 September 2011 at 3:23pm

Hi Bee....congrats on being pregnant!!
I was 19 weeks pregnant when I found out about my sons defect. We were first told it was Transposition, but ended up being Tetralogy of Fellot.
The 4-6 weeks of being there, take that with a grain of salt. We seen some transposition babies come and go very quickly when we were there, and obviously some stay longer.
Starship is AMAZING, and also our wee heart babies are just as amazing and fight hard!
It's a very scary time, and yes the next year will be hard i won't lie to you - but it'll be so rewarding and will make you treasure your precious baby all the more.
keep ya chin up, we have an amazing health system in new zealand, and amazing doctors, nurses and surgeons.
Do you have FB??? .... add me if you like, you should find me as Claire Sword
:) ]]> Fri, 30 Sep 2011 15:23:37 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1393844&title=heart-children-roll-call#1393844 <![CDATA[Heart Children roll call : Aww Bee, thats awful news, Im...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392876&title=heart-children-roll-call#1392876 Author: Raspberryjam
Subject: 31320
Posted: 27 September 2011 at 11:09pm

Aww Bee, thats awful news, Im so sorry to hear you have joined the club.
My girl has a different condition, but we too did 8 weeks in starship. Basically not much else to say other than what the others have said, starship, ward23b and ronald mcdonald are all fantastic supports.

The heart surgeons are amongst the top ten in the world!

@heart is on facebook - link up with them and find your local support systems now so you can feel a little more comfy and learned about what will happen.

My little one was not expected to make it, but she didnt need surgery til 4 weeks and now is a happy mostly healthy 3 year old, so dont loose hope sweet, we are all here to support you in which ever way we can

You may have already seen this in your heart pack? but its very relevant to having a heart child

Welcome to Holland
When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks and you learn a few phrases in Italian so you can get around. When it comes time, you pack your bags and head for the airport — for Italy.
Only, when you land, the stewardess says, “Welcome to Holland.”
You look at one another in disbelief and shock and say, “Holland? What are you talking about? I signed up for Italy!”

But they explain there’s been a change of plans and you’ve landed in Holland, where you must stay. “But I don’t know anything about Holland! I don’t want to stay!”

But you do stay. You go out and buy some new guidebooks. You learn some new phrases and you meet people you never knew existed. The important thing is that you are not in a lowly, plague-infested slum, full of pestilence and famine. You are simply in a different place than you had planned. It’s slower-paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life you will say, ”Yes, that’s where I was going. That’s what I had planned.”

The pain of that will never, ever go away.

You have to accept that pain because the loss of that dream, the loss of that plan is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.


Take care
Jo
x
]]> Tue, 27 Sep 2011 23:09:43 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392876&title=heart-children-roll-call#1392876 <![CDATA[Heart Children roll call : welcome Bee my sons have different...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392842&title=heart-children-roll-call#1392842 Author: Limochick
Subject: 31320
Posted: 27 September 2011 at 9:36pm

welcome Bee my sons have different conditions to yours but with my oldest we found out at 36wks (we lived in Waikanae) and were very scared, anxious and had no idea what to expect. It is a roller coaster ride to say the least Ronald macdonald house is awesome and so is the heart ward!! Oh and the Wellington Heart Children branch is great!!

I spoke to Tim Hornung (I think that's how you spell it) today and we now have a semi-plan in place for Quin. He needs to go up for an MRI within the next couple of months and once they have those pics will decide exactly what they are doing and then surgery. Thomas is being discussed on Monday cos apparently his valve now has quite a bad leak so they may need to operate again

I hope everyone else is doing alright!!!

We are very lucky to have such great doctors and resources!!!!]]> Tue, 27 Sep 2011 21:36:07 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392842&title=heart-children-roll-call#1392842 <![CDATA[Heart Children roll call : Welcome Bee. So sorry to hear...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392816&title=heart-children-roll-call#1392816 Author: Nikki
Subject: 31320
Posted: 27 September 2011 at 8:56pm

Welcome Bee. So sorry to hear of your bubs diagnoses - it must be a complete shock. If there is one good thing about finding out when pregnant, at least you have time to get your head around it all a little, and research the condition etc.

My sons defect was different, but I also spent about 4 weeks in hospital with him. He had surgery at 6 weeks (was diagnosed at 3wks) but was still at his birth weight at that time so very tiny too. It is heartbreaking seeing your tiny newborn bub going through surgery! Handing him over would have to be one of the hardest things I've ever done.
The staff on the ward are really awesome. You will get a room with a bed for you and a cot for bub and I assume your partner would stay at Ronald McDonald house being from out of town. I found the time on the ward really hard as it felt a bit like a prison cos I couldn't really leave (was breastfeeding him and he wasn't allowed out of hosp) and every morning they came in and weighed him and I was devastated if he hadn't gained weight! there was also alot of mucking around the day he had surgery (yes we're doing it, no we're not etc - and all that time I couldn't feed him in case it did go ahead, so he was screaming hungry and my hormones were raging!!) but the nurses are absolutely fabulous, and the surgeons are world-class and do an amazing job. Your bub will be in great hands.

Theres not much else I can remember to tell you about the hospital, apart from maybe take a plastic plate and coffee mug in case they are still short! (If you've got access to Ronald McDonald house you may be able to go there for some food though, I'm not sure how that works). They feed you if you're breastfeeding (cos you're feeding the patient) but I don't think you get meals if not. there was always toast and left over meals in the kitchen though. they have washing machines. Some nurses were happy to give you heaps of nappies and some more stingy, so I grabbed more when the generous ones were on. But basically you should only need to take a few I think as they supplied them when I was there. They will probably give him a dummy for pain relief (I was anti! but it was great for all the blood tests etc). If you have a car and your partner needs to park it there - find out about the free parks from the staff (we found out the week we left) - if they still have them that is.

The @heart support staff on the ward are wonderful, and I'm sure there is probably a welly branch you can contact for more info now?

Some ladies who have been there more recently may be able to tell you more ...

If you have any more questions though .. ask away!]]> Tue, 27 Sep 2011 20:56:23 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392816&title=heart-children-roll-call#1392816 <![CDATA[Heart Children roll call : ...Edited by Bee_ - 26 July 2016...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392801&title=heart-children-roll-call#1392801 Author: Kumara77
Subject: 31320
Posted: 27 September 2011 at 8:32pm

...

Edited by Bee_ - 26 July 2016 at 10:36am]]> Tue, 27 Sep 2011 20:32:31 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1392801&title=heart-children-roll-call#1392801 <![CDATA[Heart Children roll call : Good luck Limichick!! Is anyone...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390695&title=heart-children-roll-call#1390695 Author: ClaireSword
Subject: 31320
Posted: 22 September 2011 at 10:18am

Good luck Limichick!!
Is anyone here in Chch?!?]]> Thu, 22 Sep 2011 10:18:33 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390695&title=heart-children-roll-call#1390695 <![CDATA[Heart Children roll call : Good luck Limochick!!! Hope it...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390594&title=heart-children-roll-call#1390594 Author: Nikki
Subject: 31320
Posted: 21 September 2011 at 10:12pm

Good luck Limochick!!! Hope it all goes as well as it can.

Jake didnt sleep ... of course .... wishful thinking that he would!
Will definitely try to make it to another one. ]]> Wed, 21 Sep 2011 22:12:50 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390594&title=heart-children-roll-call#1390594 <![CDATA[Heart Children roll call : was nice to meet you too Nikki!...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390448&title=heart-children-roll-call#1390448 Author: Raspberryjam
Subject: 31320
Posted: 21 September 2011 at 6:07pm

was nice to meet you too Nikki! fun bunch of girls for sure - usually iuts not quiet so crazy there and we get the chance to all chat together

Good luck Limochic x
]]> Wed, 21 Sep 2011 18:07:37 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390448&title=heart-children-roll-call#1390448 <![CDATA[Heart Children roll call : They are going to be disscussing...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390295&title=heart-children-roll-call#1390295 Author: Limochick
Subject: 31320
Posted: 21 September 2011 at 1:34pm

They are going to be disscussing Quin on Monday and I'm super nervous ]]> Wed, 21 Sep 2011 13:34:46 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390295&title=heart-children-roll-call#1390295 <![CDATA[Heart Children roll call : Hopefully he will think its cool!...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390270&title=heart-children-roll-call#1390270 Author: Nikki
Subject: 31320
Posted: 21 September 2011 at 1:02pm

Hopefully he will think its cool! I visited a primary school today and they said the kids do tend to ask about things like that but the teachers are really sensitive to it and just tell the kids the facts and that seems to stop them questions.

Lovely to meet you today RJ! I'm glad I came now, it seems like a nice bunch of ladies, and that cafe is brilliant. Shame Jake wasn't feeling 100% .... hes gone off for a nap now!! Its just a cough and asthma but must be taking a bit of a toll. Who knows if hes actually sleeping though ....]]> Wed, 21 Sep 2011 13:02:04 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1390270&title=heart-children-roll-call#1390270 <![CDATA[Heart Children roll call : awww Nikki I&#039;m sure he will...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1388925&title=heart-children-roll-call#1388925 Author: Limochick
Subject: 31320
Posted: 17 September 2011 at 2:42pm

awww Nikki I'm sure he will be fine it will be something that makes him special and everyone will want to know his story. Boys think scars are cool as well My son is also quite sensitive, he's 10 and we have to have hugs for 1/2 an hr before he goes to bed lol!!

Thanks for the vote ]]> Sat, 17 Sep 2011 14:42:17 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1388925&title=heart-children-roll-call#1388925 <![CDATA[Heart Children roll call : Voted I hope he will be OK...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1388924&title=heart-children-roll-call#1388924 Author: Nikki
Subject: 31320
Posted: 17 September 2011 at 2:23pm

Voted

I hope he will be OK with the scar when he gets to school. Hes a bit of a sensitive kid.]]> Sat, 17 Sep 2011 14:23:44 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1388924&title=heart-children-roll-call#1388924 <![CDATA[Heart Children roll call : Nikki - school comes around very...]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1388822&title=heart-children-roll-call#1388822 Author: Limochick
Subject: 31320
Posted: 17 September 2011 at 6:36am

Nikki - school comes around very fast Life likes to throw all sorts of challenges at us unfortunatly!!

Thomas got photos taken when he was in surgery and he's got a heart book he takes it to school every year and shows the kids in his class, he's quite proud of it though for the 1st year he wouldn't swim without a rash shirt. His scar is actually very light so you don't really notice it unless you are really looking.

Just letting you all know if that Quin is up for baby of the day today so if you want to vote for a fellow heart child we would really appreciate it ]]> Sat, 17 Sep 2011 06:36:57 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=1388822&title=heart-children-roll-call#1388822