Violets heart journey
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Meet Violet,
At just 3 weeks of age, a parents worst night mare came to fruition when violet stoped breathing and turned blue. This brought violet and her parents to their first emergency trip to gunnedah hospital.
Whilst the gunnedah hospital unfortunately misdiagnosed violets first episode as sleep apnoea, after a transfer to Tamworth base hospital and 2 days of testing, violet was diagnosed as having an abnormal heart. because of this diagnosis violet was transferred to a bigger hospital in Sydney that could accomodate her condition. what was meant to be a day trip turn into a 4 week long stay, as poor little violet was in early stages of heart failure. thankfully she received treatment and was placed on medications to manage her heart condition for the time being, but this sweet girl was in for a very long road ahead.
It was on discharge (3 days before Christmas) that her parents were given the news their precious baby girl could go one of three ways: she could get better, she could need surgery or sadly she would die.
Form that moment on Violet has been in a constant battle with her condition, her parents in a constant state of worry for their baby. At just 10 months old she has faught the odds more times then most adults do in a life time.
Violet was doing ok for a short period but her heart had gotten worse. more and more medications were needed to keep her condition in check. violet has needed numerous hospital admissions, in Tamworth as well as Sydney.
Violet has struggled with feeding and gaining weight so in June the paediatrician and dietitian decided she needed a feeding tube she's had it for nearly 3 months and has still not put much weight on
Violet is 10 months old but weighs just 6.8kgs. This frail little body holds the most beautiful sweet soul bursting to love and live. Unfortunately her heart is failing her and her parents and numerous health care professionals in gunnedah, Tamworth and Sydney all need to assist her in her fight to survive.
Just 4 weeks ago Violet became very ill and was admitted to Tamworth hospital after a few days the drs believed she was getting better then in a matter of an hour Violet had deteriorated and ended up on a lot of machines to help her breath and take the strain of her heart, she was immediately flown to Westmead childrens hospitality in Sydney where she was in intensive care/ close observation unit where her parents were told she would need to remain there.
24 hours later Violet was diagnosed with pneumonia, she was given an iron transfusion, given antibiotics, and put on IV fluids and not allowed anything to drink for 3 days due to fluid overload and because of the pressure on her heart. What little she could have was very restricted due to the machines she was on and the risks involved.
On days 5 little violet started to become herself again and fought against all odds to come home after 8 days.
Violet and her parents have been back to Sydney since being discharged with all the travel taking a huge toll on them both emotionally and financially.
Vioets heart medication has been increased and her feeding has been changed again due to still not being able to eat solids and her weight being dangerously low. Little violet, will be attending many ongoing appointments in Sydney, and very shortly attending Melbourne for a heart transplant assessment.
Violet and her parents are doing everything possible to stay positive and to enjoy every moment they have with each other.
But they both need your help.
At just 3 weeks of age, a parents worst night mare came to fruition when violet stoped breathing and turned blue. This brought violet and her parents to their first emergency trip to gunnedah hospital.
Whilst the gunnedah hospital unfortunately misdiagnosed violets first episode as sleep apnoea, after a transfer to Tamworth base hospital and 2 days of testing, violet was diagnosed as having an abnormal heart. because of this diagnosis violet was transferred to a bigger hospital in Sydney that could accomodate her condition. what was meant to be a day trip turn into a 4 week long stay, as poor little violet was in early stages of heart failure. thankfully she received treatment and was placed on medications to manage her heart condition for the time being, but this sweet girl was in for a very long road ahead.
It was on discharge (3 days before Christmas) that her parents were given the news their precious baby girl could go one of three ways: she could get better, she could need surgery or sadly she would die.
Form that moment on Violet has been in a constant battle with her condition, her parents in a constant state of worry for their baby. At just 10 months old she has faught the odds more times then most adults do in a life time.
Violet was doing ok for a short period but her heart had gotten worse. more and more medications were needed to keep her condition in check. violet has needed numerous hospital admissions, in Tamworth as well as Sydney.
Violet has struggled with feeding and gaining weight so in June the paediatrician and dietitian decided she needed a feeding tube she's had it for nearly 3 months and has still not put much weight on
Violet is 10 months old but weighs just 6.8kgs. This frail little body holds the most beautiful sweet soul bursting to love and live. Unfortunately her heart is failing her and her parents and numerous health care professionals in gunnedah, Tamworth and Sydney all need to assist her in her fight to survive.
Just 4 weeks ago Violet became very ill and was admitted to Tamworth hospital after a few days the drs believed she was getting better then in a matter of an hour Violet had deteriorated and ended up on a lot of machines to help her breath and take the strain of her heart, she was immediately flown to Westmead childrens hospitality in Sydney where she was in intensive care/ close observation unit where her parents were told she would need to remain there.
24 hours later Violet was diagnosed with pneumonia, she was given an iron transfusion, given antibiotics, and put on IV fluids and not allowed anything to drink for 3 days due to fluid overload and because of the pressure on her heart. What little she could have was very restricted due to the machines she was on and the risks involved.
On days 5 little violet started to become herself again and fought against all odds to come home after 8 days.
Violet and her parents have been back to Sydney since being discharged with all the travel taking a huge toll on them both emotionally and financially.
Vioets heart medication has been increased and her feeding has been changed again due to still not being able to eat solids and her weight being dangerously low. Little violet, will be attending many ongoing appointments in Sydney, and very shortly attending Melbourne for a heart transplant assessment.
Violet and her parents are doing everything possible to stay positive and to enjoy every moment they have with each other.
But they both need your help.
Organizer
Violet Rose
Organizer
New South Wales
