Heart Children roll call

Hi

I thought I'd start a thread for those of us with Heart Children. Somewhere we can go to discuss stories, concerns and happy times.

I know there are a few of us that have Heart Children and would love to hear from you.

My youngest son Jacob has pulmonary atresia and MAPCAs. To date, he has had one catheter and one attempted catheter. Full heart repair is booked for the end of this month

We were orginally told in Feb 2009, that they could not repair his heart and that he had a short life expectancy (10 - 20 years). On the CT scan in Sept 09 (after a failed catheter), it showed confluent central pulmonary arteries (which they believed Jacob didn't have). They are now confident they do do a full heart repair Thank goodness for those beautiful central pulmonary arteries!!!!

I'm feeling confident about the surgery, but not looking forward to the journey that Jacob will take us on (he has a bad habit of scary us!)

I know every child is different, but how long did your little one have to stay in hospital for after open heart surgery? For those who don't live out of Auckland, were you discharged from Starship or did you do a hospital transfer to your nearest hospital to fully recover?

Hi all, I have a heart babe, but before i tell you about her, I must say Im always a little dubious about swapping stories.
For anyone who reads these stories , especially if you have only just been diagnosed, what each defect or issue means for one child - really only pertains to that child - the way the kids cope is so individual - even if they have the same defect.

My beautiful little girl Milla, has truncus arteriosis - which is no pulmonary vessels, a leaking truncal valve (at the base of the aorta) and did have a 7mm VSD which was closed at her 1st surgery , full replacement of pulmonary vessels at 1st and second surgery. Her truncal valve is yet to be repaired as it is mild
She has had 4 catheters - 3 with dilatation for narrowing in both the RVs and SVC

Nikki to answer your question and to tell her story, Milla was born at National womans so after only 6 hours in NICU we were on the ward. She was in HDU for 1 week, mostly beause I had a c section and couldnt care for her on my own. at 3 weeks 5 days she showed her first signs of heart failure, it was sunday, had her first open heart on the tuesday at 4 weeks old.
Milla came out of surgery with her chest open - which is common for tiny babies - even though we knew that - alarming!! 24 hours later they closed her chest and her ventilator moved - as a result she had a bracycardic arrest and they had to whip her back open and massage her heart for 4 mintues to stabilise her. As a result of her issues we spent a very long 10 days in PICU and a further week in HDU before being put back ina room. We left 8 one day short of Milla being 8 weeks old.

Take two was because the first op didnt work - due to size of Milla, size and material of the replacement vessels and Milla is inclined to have narrowing of her vessels.
So back in at 6 months exactly - for a full pulmonary replacement - from the time we handed her to the PICU nurse to the time we rolled her back to the ward 22 hours!! - incredible - she woke the day after surgery breathing on her own and trying to taker her ventilator out.
From memory a few days in HDU then home within a week. Size makes a huge difference - I hated the way they went on about feeding her more and weighing her so often - but it was just about the difference between life and death for us

Dh was in Ronald Mcdonald family rooms on level 3 while i was still in maternity, then kicked of home - which sucked - we had never had a night apart the whole time we had been together and now he couldnt be with us when they were expecting Milla to die - it was horrible. Each surgery or time in HDU - we have both been allowed to stay at Ronald Mcdonald - but otherwise it was just me allowed to stay in Millas room because we live in Auckland

Huge story!!!! feel free to ask questions - Im so proud of my little super star!!

ps our surgeon was Liz Rumball - she is our Hero!!

Edited by Raspberryjam

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This is my girl not a week after her 6 month op - home again!

Here's a photo of Jacob on his first birthday


Edited by NikkiB

Thanks, I think so too lol

We're getting closer and close to his op and I'm feeling really positive about it all. I'm sure I'll go through ups and downs before the big day.

Thanks Raspberryjam Jacob certainly seems to have a very strong will to live

Nigel Wilson is our lead cardiologist and it looks like Kirsten Finucane is calling all the shots about the upcoming catheter and surgery - so hopefully she is the surgeon.

Yes, I heard that about Nigel's son Nigel was very very empathic (sp?) when tell us about Jacob's short life expectancy. And then he was SO happy when they discovered they can hopefully repair his heart. We are certainly very very lucky with the team we've got up there - that's why I feel so positive, we couldn't ask for better.

Poor Nigel though, I understand it was due to cancer and his son ended up on Ward 23b

I think we must have seen them all too Flissty, I think in our first stay they all had a rotation.

What I like about Jon skinner is that he is black and white - no fluffy stuff - just tells it like it is. Milla was admitted for constipation - I was fuming!! Id already had 4 months at home caring for this fragile baby who had had no complications and they stick us in for that - he walked in - took one look at her and said take that tube out - she is obviously eating and go home - Awesome!!

Tim is fab too, really articulate - dosent speak to you like your stupid - obviously after being in there so often you understand most things that are going on, although Id rather not no a bloody thing!!

When are you back? Are you in auckland ?

Daniel is very cute. I was gonna say we could catch up for a coffee, we are due back in july too, but Im also due to have a baby in july so not sure how that will pan out!

Hey Everyone

   

Hugs to you all - it always brings a tear to my eye reading about other heart children

What cute strong babies you all have

Roman is also a heart child - he had his open heart surgery when he was 4 1/2 months old.

He has APW - Aorto Pulmonay Window.  As a result of the APW he also had Pulmonary Hypertension.  Bascially he had a large hole between his aorta and pulmonary artery which then pumped high pressured blood meant for the body into the lungs instead of the low pressured blood that the lungs should receive. So his heart and lungs were working overtime, thus why his heart was enlarged and his lung tissue hardening.

The surgery was high risk but also "simple" - they put a patch over the hole

We had Kirsten Finucane as his surgen - what a .   She was made an Officer of the NZ Order of Merit .   She is very talented - as soon as we met her we felt our little baby was "safe" in her hands

We have John Stirling as our Lead Cardiologist, and Tom Gentles as our Lead Consultant.

Roman spent 4 days in PICU, then 3 days in HDU, then 8 days in our ward room.

Everyone in PICU was good but a nurse called Liz was fantastic - she really went the extra mile and helped me "feel useful/needed" again - previously all I was allowed to do was just sit there watching him all drugged up and wires etc everywhere feeling useless & the nurses would just sit there watching him, giving more drugs and filling out their sheets - but Liz let me wipe him down with flannels to "bathe him", she let me feed him though the feeding tube, she told me about the journalling box  (PICU has a journalling box at reception that is avaiable to parents to use with journal book, stickers, pens etc ) - it actually really helped me to process and when Roman is older we can use it to show him what happened to him (I collected xrays, results, tubes, bits & pieces  - she really helped me during that difficult time.

While he was in PICU they did several more chest xray's and saw that he had developed Pneumonia in his lungs, and his left lung had collasped. Kirsten was very blunt and said he was a lucky boy, if he didn't have the operation when he did he would have died - as the Pneumonia would have been too much for his already overworked heart & lungs....   Such a scary thought

He was such a brave little boy all the way through, just took it all in his stride - he is our strong little warrior