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DaisyAngel
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Joined: 05 August 2008
Location: Auckland
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Posted: 07 February 2010 at 12:02pm |
Yip that sounds like Liz She was an angel too when Roman had several pulmonary hypertensive crises. Here's a pic of her
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NikkiB
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Joined: 25 January 2007
Location: Wellington
Points: 2354
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Posted: 07 February 2010 at 12:18pm |
SimSam wrote:
I that pic of "our" gorgeous Jacob x x x x x x Cant wait to catch up when you come up Nikki - I know its going to be a super tough time, but all Jacobs Auckland "aunties" are ready to support you all!! |
Thanks SS I know I'm extremely lucky to have so much wonderful support in here. Just think, if Jacob wasn't who he is, then we may not have meet all you lovely Auckland aunties.
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A very lucky mummy to two gorgeous boys:
RB 3/10/2008
JB 29/12/2009
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NikkiB
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Location: Wellington
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Posted: 07 February 2010 at 12:27pm |
Hi Angelina
Gosh Roman sounds like a little fighter too! His first birthday will certainly be worth some celebrations!!!! Gorgeous, checky grin! You must be so proud of him.
Liz looks very familar, but we haven't had her. I can't remember the names of the nurses we had, but they are all so lovely down in PICU.
It seems like pneumonia is common in PICU. With Jacob's last catheter study, he got strep pneumonia and was very very ill, giving us such big frights (again! - he did that when he was first born too).
The doctors and nurses tend to 'freak out' a bit down here when I take Jacob to hospital. They aren't use to dealing with heart babies so become very paranoid. They generally admit us straight away, then they do chest xrays etc. Must be nice being in Auckland where all the specialists are - probably gives you a lot more confidence.
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A very lucky mummy to two gorgeous boys:
RB 3/10/2008
JB 29/12/2009
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DaisyAngel
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Location: Auckland
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Posted: 07 February 2010 at 1:50pm |
Yeah we are having a big party to celebrate We are sooo proud of him
I must admit It is a relief/comfort having Starship in AKL - but our local hospital is Waitakere Hospital, they have been involved in his care as well and have been good/helpful too
Is anyone going to the International Congential Heart Day on Valetines Day that Heart Children AKL is putting on? St Heliers Bay Beach Reserve 4-6pm
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Raspberryjam
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Joined: 07 November 2007
Location: north shore
Points: 4066
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Posted: 07 February 2010 at 4:00pm |
Wow, you guys must have been terrified with the pneumonia - knock on wood we havent had it - its great that you have strong little boys!!
Yes thats her, she is just such a blessing to that place, Miles too. my dh found him fab down there - bit of manly support.
I wasnt going to the beach day , i think we are busy actually
We take Milla to north shore occasionally , they dont freak out about heart kids, or admit us ever - its great - they just treat her for whatever we take her in for. Milla has very obvious signs when its cardiac, and thank fully has never 'misbehaved' outside of surgery
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NikkiB
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Joined: 25 January 2007
Location: Wellington
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Posted: 13 February 2010 at 8:21am |
Do you guys try to go to the CH's coffee groups? I've probably been to a handful, but I must make more of an effort to go to more this year. The coffee groups I have been to have been very informative and encouraging (particularly regarding tube feeding)
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A very lucky mummy to two gorgeous boys:
RB 3/10/2008
JB 29/12/2009
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Raspberryjam
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Joined: 07 November 2007
Location: north shore
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Posted: 15 February 2010 at 6:18pm |
I dont attend anything like that, I have run into some really negative people along the way and just dont have time for that. I have met some wonderful people just by chance and am happy to leave it at that
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NikkiB
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Joined: 25 January 2007
Location: Wellington
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Posted: 18 February 2010 at 8:22pm |
Looks like Jacob's surgery has already been pushed out to next Friday (its only been pushed out by one day - I hope this isn't a sign of things to come )
*drums fingers* the waiting is driving us insane
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A very lucky mummy to two gorgeous boys:
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JB 29/12/2009
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Nikki
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Joined: 02 October 2003
Location: West Auckland
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Posted: 18 February 2010 at 9:50pm |
Hi all, I have a heart baby too. Brings tears to my eyes reading all the stories. I know how you feel Flissty about feeling like a bit of a fraud as Jake doesn't have on-going issues --- but we certainly went thru h#ll at the time!
He was diagnosed at 3.5weeks (no indication earlier, so a real shock!) and had open heart surgery at exactly 6wks, we'd been in hospital waiting for him to gain weight but he was still at his birth weight so they couldn't wait any longer. He had a large VSD and faulty tricuspid valve (plus another small hole and enlarged heart due to the blood pressure/VSD). Kirsten was the surgeon and Clare is our Cardiologist. We only spent a week in hospital after surgery (they didn't transfer us to waitakere, but he was too young to be immunised so that could be why) but they only really discharged him as they needed the bed, cos he still hadn't gained weight (we had a community nurse daily for a while). Those daily weigh-ins in hosp were so stressful!!! I think cos I was BFing I felt so responsible for him not gaining weight! He spent 2 days in intensive care and less than 48hrs in HDU then back to the ward and BFing.
I had planned to go to the valentines day thing - but DH had food poisoning! I think it was rainign anyway. I've been to a few of the things they have - zoo, motat, easter egg hunt etc. And I did try one of the NS coffee groups at first but the person in charge didn't turn up and never textd me back when I asked when they were next on! So there was only me and one couple there.
Good luck for the surgery!!!
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DS (5yrs) and DD (3yrs)
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NikkiB
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Joined: 25 January 2007
Location: Wellington
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Posted: 19 February 2010 at 6:54am |
Thanks Nikki Ha! Another Nikki with a little boy Jacob, with a heart defect!
Pleased to hear Jakob is doing well now. Must have come as a real shock.....not a very nice way to start motherhood. Shame about the coffee groups. Our Wgtn person is excellent with morning teas and keeping in contact.
Jacob is fully tube feed at present, so at least that is one thing we don't have to worry about at the moment - him feeding properly before they discharge us. He's only had to be tolerating his food before we've been discharged from hospital before.
Mind you, I can't wait until he's at the stage where he is well enough and fat enough for us to try to get rid of the ng tube.
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A very lucky mummy to two gorgeous boys:
RB 3/10/2008
JB 29/12/2009
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NikkiB
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Posted: 19 February 2010 at 6:03pm |
We've just received another call from Starship. There is a good chance that we will be sent home after Jacob's catheter study and will get a call later for us to go back up for his surgery They've had a few babies born who need urgent surgery. At least Jacob isn't classed as urgent. I'm gutted, but I also feel for the families that are in the 'urgent' basket.
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A very lucky mummy to two gorgeous boys:
RB 3/10/2008
JB 29/12/2009
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Raspberryjam
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Location: north shore
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Posted: 19 February 2010 at 6:06pm |
Oh hun, thats disappointing, its quite a battle of the mind preparing for something so huge, but like you say , and I completely agree, at least its not your babe who is critical
We were sent home three times, so it sounds not uncommon, fingers crossed its sooner rather than later aye
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NikkiB
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Posted: 19 February 2010 at 6:19pm |
Thanks Raspberryjam. 3 times...wow...how do you get your head around that?
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A very lucky mummy to two gorgeous boys:
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JB 29/12/2009
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Raspberryjam
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Posted: 19 February 2010 at 10:35pm |
Um I guess we just focused on the positive that it wasnt our baby in trouble that time, that was at her 6 month op. The first time was the worst they didnt call her off til after 11am and we had been there since 6 that morning with a very hungry baby!
I dont think its so bad when you live in auckland.
Its a pain to wait but they wont put your babe at risk. Im really looking forward to you being so excited about how much better your lovely Jacob will be!! Its like you can finally breath out
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NikkiB
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Posted: 20 February 2010 at 7:05am |
Raspberryjam wrote:
Im really looking forward to you being so excited about how much better your lovely Jacob will be!! Its like you can finally breath out |
I can't wait either! I can't wait to see that different little boy
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A very lucky mummy to two gorgeous boys:
RB 3/10/2008
JB 29/12/2009
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Nikki
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Location: West Auckland
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Posted: 20 February 2010 at 10:17am |
So sorry to hear about the delay. We were mucked around alot while in hospital but didn't have to go back for more surgery thankfully, so I can only imagine how hard it is when there is a delay once you've prepared mentally for it.
Weird re the Nikki / Jacob / Jakob / heart defects!!
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DS (5yrs) and DD (3yrs)
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Raspberryjam
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Posted: 20 February 2010 at 1:12pm |
We have an anatomy scan on Monday, Im so fricken scared!!
We got them to check that bub had 4 chambers at our NT scan - seems that part is ok, just hope all the right connections have been made!!
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fire_engine
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Posted: 20 February 2010 at 2:56pm |
RJ, how did you arrange the fetal echo? Did your MW refer you?
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Raspberryjam
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Posted: 21 February 2010 at 7:22pm |
Heya, actually Milla had a cath in dec and I just told Heather I was pregnant and she said make sure you get a fetal echo here and yeah the MW will just send through a ref. Must say its huge piece of mind knowing they will have a look, even if we are having a anatomy at insight
Just got a letter in the post yesterday to say Milla has clinic on the 17th of March - may be on the ward when your up this way NikkiB
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MummyFreckle
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Posted: 22 February 2010 at 8:05am |
Thinking of Nikki & Jacob today getting his catherter study done.....
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