Aria's Heart Journey

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 🎄🎄🎄