Heart Children roll call

 

Yip that sounds like Liz   She was an angel too when Roman had several pulmonary hypertensive crises.  Here's a pic of her

 

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.

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

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

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!!!

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.

Thanks Raspberryjam. 3 times...wow...how do you get your head around that?

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

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!!

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