Help give our Raevyn a Beautiful Send Off

Help Give Raevyn A Beautiful Send Off!

Everyone this is our precious Raevyn Harper and this is her Story :

At 19 weeks her dad and I had found out that our sweet baby girl was dignosed with two rare and complex heart conditions named,

•Transposition of the Great Arteries

•Double Outlet Right Ventricle

•One Large Subpulmonary VSD.

As first time parents our hearts were filled with love and so much joy but I became so fragile to find out about these conditions our girl would have to face.. but each day she grew, so did my ever lasting love did too ❤

On the 20th of October, we had to take Raevyn into Emergency at the Queensland Children's Hospital. She was not waking, shallow breaths and she was not feeding. 

She had a Xray done on her Chest and we were told there was Fluid around the Heart, Lungs and her Liver was inflamed. Our Daughter was in heart failure

On the 27th of October... our Raevyn had just turned 1 month.

We spent the morning reading Doctor Seuss books and singing " you are my sunshine".

8am arrived she was taken down to the surgical ward to await her Heart Surgery. 

10 hours later we got the phone call and awaited to talk to her surgeon, he explained the surgery was a success which was a relief but that would only be the single good news we were to ever receive from that point forward.

28/10/20022, From 3am her blood pressure kept dropping in the low (30s) and had to be placed on the Echmo/Bypass Machine as they discovered a bleed in the Airways/Lungs and needed to support both Heart and Lungs to prevent the heart from any more damage. Four hours later the Doctor dignosed Raevyn with an aggressive form Sepsis, she was in Shock from Sepsis ( Pseudomonas grown in her blood ) what is causing failure in many of Raevyns organ system

-Liver & Kidney Failure/ Blood clotting problems, she is on ongoing blood transfusions.

- Trouble clearing ammonia, she's on Haemodialysis.

We have also found out she now has been diagnosed with Necrotising Enterocolitis (NEC) and that is caused by low blood flow reaching the intestines.

Raevyn also has fluid leaking into her tissues which they are using dialysis to attempt to take some fluid off.

Due to the low blood flow and the damaging to her tissues, her fingers, hands, feet and toes was black and purple and shrivelling up.

Raevyn was going to lose all her Limbs.

06/11/2022 She had a Bronc done and explained how Raevyns left airways were clotted and were able to remove blood clots from the lung what was there when she first contracted the bleed from her surgery. When assessing her Right airway the respiratory team were unable to get far as there way a blockage in the airways. They flushed it with sailene and left there till the 05/11/2022

05/11/2022

The Respiratory team did another Bronc and they believe what she has on her hands and feet could may be the same as what she has in her airways and lungs on the Right side. This alone could have taken weeks to recover.

Her left main airways looked clear but her right main airways are inflamed and blocked. We were unsure if it was Necrotic Lung or old blood clots.

15/11/2022

her head surgeon who's been on our case since day one had opened up the chest to assess the heart and lungs, he was unable to follow through with placing Raevyn on the VV Echmo.

When viewing the lungs, both sets are Nercotic. Meaning, both whole lungs are complete dead tissues.

Lungs are suppose to be soft and spongey. Raevyns lungs are solid.

All her surgeon could do is cover her chest up and leave raevyn to continue on with her VA Echmo, the same one as she has been on for the last 17 days.

As of the 18th of November, Raevyn had one last Bronchoscope to assess her airways.. but the respiratory person was unable to reach her left main stem amd her right main stem to the airway. My Raevyns airways were Icteric/ Nercotic. They could barely see a remnant to her left main airway.

I was told that our sweet Raevyn had a Zero chance of survival. 

On Saturday the 19th of November at 1:53pm,

Raevyn Jayne Elaine Harper grew her wings and lost her battle with Sepsis. She fought every single day of her precious life and is the bravest and strongest little girl I'll ever get to know. She was the Sunshine who lit up our whole lives but now without her present, her dad and I feel ever so dark amd bloomy. She will never be forgotten our Raevyn.

Raevyn was 8 weeks and 3 days old.

Please help us give Raevyn, our little rae of Sunshine the send off she truly deserves. No donation is to big or to small as it will go towards our Raevyns Funeral service in Gladstone QLD.

I would like to thank everyone who has been following raevyns journey start to finish. we are so thankful for all the positivity and prayers people have sent along the way. Raevyn will never be forgotten