Aria's Heart Journey
Supporting Arias family while her "broken heart" gets fixed.
Manawatu / Whanganui
When Libby was 21 weeks pregnant she went for a scan and was given the news that baby had a lot of abnormalities with her heart but they couldn’t be sure how serious it was until she was born. What they did know was that she would need several surgeries before the age of 4.
After 19 weeks of stress awaiting baby’s arrival ‘Aria Te Aroha’ was born on the 27th September, after a quick cuddle she was taken straight into NICU and hooked up to heart machines. At 5 days old they were able to leave the hospital for 2 days but after a visit from the home nurse her oxygen levels were too low and she was rushed back to starship by ambulance where she has been since. Today Aria is 19 days old and yesterday she underwent her first open heart surgery. She was put on a bypass machine and they put a PA band in which tightens the way to the lungs reducing the blood flow and supporting her oxygen levels. They also opened the top chamber in her heart as it was so blocked the hole was the size of a pin point which was what was making it so hard for her to breathe.
Aria is only 19days old and this is just the beginning of a long journey for her and her family. Aria has a heart defect known as TGA (Transposition of the Great Arteries) which means the Aorta and Pulmonary arteries are around the wrong way in most cases a ‘switch’ is performed. Unfortunately, Arias heart is quite complicated and her Mitral valve has not formed and her LOVT is restricted. Aria also has Hypolastic left heart syndrome with normal function (her left side of the heart is bigger then the right) so the surgeons will need to come up with a different surgical plan for Aria.
Along with this wee Aria has neurological issues which they currently are not too worried about but will keep a close eye on.
I have asked Arias family if I could set this page up to help ease the stress while she is in Starship. The funds from this page will be used to support the day to day needs of the family and to allow her sister Charlee to maintain some normality and leave the hospital to do activities as she is also finding all the change quite challenging.
The family is overwhelmed with all the kindness of everyone at this difficult time and would like to say a big thank you to you all for your endless support. If you would like to follow Arias journey there is a private page called ‘Arias little heart journey’ which you can request to follow x
Jodie McCown 's involvement (page creator)
Best friend/sister
Use of funds
Funds will be used for Travel, food, charlee's activities, anything Libby & her family may need
Latest update
Aria December 10 December 2018
Aria update from libby 4th dec
This should be the post where I write and say yay were getting discharged but unfortunately after a brief chat with a doctor in the lift she seems to think that were here for a few more months which has just put the icing on the cake
Last time I posted I was so happy she was on 0.2 oxygen which meant home was only about 2/3days away, unfortunately the down fall of being in a hospital is your likely to pick up every bug going around .. aria has rotavirus again 😫😫 a runny nose and a cough..
She’s been up and down on her oxygen the highest was last night 1.1Litres 😭😭 we are not sure if it’s because she’s sick or if she just needs that extra help..
there’s so many questions to ask but you forget as soon as you see the doctors , like if she comes off oxygen and can go home will we need to come back everytime she gets a runny nose or a cough? When she grows and her heart gets bigger will the PA band be to tight on her heart? How would we know if she’s ok will we be rushing her back one day because she’s gone blue because the PA band is to tight? Or are we going to be here until her next open heart surgery which is at 6-12months old.. so many questions but yet they have NO answers for me whatsoever
I have asked to go home on oxygen but this is not an option for us they won’t allow it 😢
Charlee has been put into kindy 2x days a week as hard as it is for me to let her go 😭😭😂😂 it’s even more horrible on her to be stuck here with me in the ward 😔 how
Today aria is on 0.7 oxygen all we can do is hope any pray once she gets over her virus and cough that she doesn’t need oxygen if she still does .... then 😭😭😭😭 we’ll just have to do what we gotta do
I have met so many beautiful families here with heart babies, was so nice having people to talk to but hardest part of meeting people is seeing them go home, I’ve never been a jealous person but man am I jealous 😭😭 super happy for them but sooo jelly I’m sure they can all relate to this feeling tho 💖💖 miss all you heart mamas
It’s Algood tho we are here for a reason our day will come when aria is ready
They can say all this and that but they cannot predict the future so I’m not giving up hope we will be home for Christmas 🎄🎄🎄
Latest donations
Thankyou x
Who's involved?
Page Q&A
Ask a question hereAny concerns?
Report this pageThank the donor
Your message will be displayed on the page and emailed to the donor.
Your new message will also be emailed to the donor.
Saving a blank entry will delete the current comment.