Our little Isabella is facing yet another challenge in her short little life. After being born at 29 weeks with a massive Sacrococcygeal Teratoma, Izzy has defied the odds again and again. We were told that she would not survive, that there was no hope and that our best option would be to terminate. We told the Doctors that termination was not an option and we would take whatever time we had with Izzy, no matter how short.
We were referred to the most precious paediatric surgeon who said to us words I will never forget. He said 'Who told you there was no hope??.... There's always hope'. His statement to us that day is why we named her Isabella Hope.
The Teratoma was literally bigger than she was, growing from the bottom of her spine. The night that she was born at 29 weeks gestation was the best and worst day of my life. Weighing approximately 1kg - the size of a bag of carrots - Isabella was taken for surgery at only a few hours old.
During the surgery Isabella suffered a cardiac arrest and the incredible team spent 45 minutes doing CPR trying to save her life. Eventually, Isabella's time of death was called. I will never forget the doctor who had to inform us that we had lost our baby girl, that they couldn't save her. To hear the news that your baby - who you have wished and prayed for - didn't make it, was the single most devastating moment of my life.
A little while later a Doctor ran into our room with a phone up to his ear saying 'They've got a heartbeat, they've got a heartbeat!'. One of the anaesthetists had looked at Izzy, laying on the operating table and 'tried one more time' to get a heartbeat. Incredibly, God gave us a miracle that night, and our little girl was alive.
The next three days were critical. We were given so much dire news over those days and months, things like, she will be brain damaged, she won't be able to sit, she won't be able to walk... but we have the most incredibly beautiful 7 year old who is a daily testament to God and His miracle working power. Izzy ended up staying three months in the Neonatal Intensive Care Unit in Brisbane.
Izzy has had more surgeries than I care to count. She has spent more nights at the Children's Hospital than I also care to count. She has had specialist appointments after specialists appointments. Multiple times a week she does therapy. She has overcome so much but has life long damage from the tumour.
She has Percy, a colostomy :)
She has Gertrude the Mitrofanoff that needs to be catheterised multiple times a day. She also has to be connected to a urine bag every night.
She has Button the Mace Flush, which we can use to flush her bowel as needed.
She has Porty the port-a-cath for IV access in her chest. This needs to be accessed every 6 weeks to keep it from clotting.She has had recurrent urinary tract infections and kidney issues her entire life.
This kid is a walking miracle, a kid that smiles and laughs and leaves an impression on all who meet her.
As if all of the above wasn't enough, last week Isabella was diagnosed with Perthes Disease in her hip after we noticed her limping. X-rays revealed that she has a fracture right across the top of the femoral head, and her bones in her hip will continue to deteriorate and break down until her little body ultimately rebuilds them.
Unfortunately, she is facing 12 months of non-weight bearing on her right leg, and to do that means a wheelchair. We have managed to source a zippy little wheelchair with flashing wheels which is really cool, and Izzy is mastering getting around the house in the chair. We have an older style home, with 14 steep stairs at the front and back. At the moment we are carrying Izzy up and down these stairs in our arms. This new diagnosis is not covered by NDIS at the moment, nor is it expected to be as Perthes Disease is usually not considered a life long disease. Regardless, we know that we have many difficult years ahead of us with this disease as well as Izzy's other health issues.
Izzy will need to continue with physio, which we go to every fortnight. We drive 1.5 hours each way for these appointments. It would also benefit Izzy to do Hydrotherapy as her weight would be supported in the water. It is difficult to get to a heated pool to help with this, and our next goal would be to get Izzy a swim spa so that she can do regular hydrotherapy at home.
As well as the physical therapy, we need to make sure that we are helping Izzy emotionally and socially as best as we can.
We have had many people ask how they can help, aside from praying for us, which we deeply appreciate. We need to find things that she can do safely and easily from the wheelchair, and there is only so much art and craft that one can do. We've purchased lego, jigsaws and games. We would like to limit screen time as much as we can. We'd love people to send her letters, she loves getting mail.
I have always wanted to teach Isabella how to play the piano. I have loved playing the piano throughout my life, the benefits of music are well known. We have been able to buy Isabella a good quality Digital Piano and I have been talking with the people at Kawai Pianos, so that she can learn how to play and do something that will be of enjoyment to her lifelong. All of her activities have had to either pause or be changed so we are continually looking for things to engage her. She would love to do singing lessons, or even art classes, so we will look into that as well. We will continue to do Distance Education with Izzy, as the flexibility enables her to continue her therapy appointments.
Isabella just turned 7 a few weeks ago, and her entire life has been a challenge that she has faced with incredible resilience. I wish she didn't have to have so much resilience. It is a word bandied around a little, but she truly is an inspiring little girl. We know that people want to help, and thought this was a practical and worthwhile cause to get behind. We feel it is an investment into her future.
As well as getting her a Digital Piano, we would like to see if we can fund or partially fund a swim spa for hydrotherapy.
So, hence our Go Fund Me. We would love to see this shared on Izzy's behalf on social media. If you know anyone, a life group, a church, a sporting group or organisation who would like to sponsor Izzy, or throw some support her way, please let us know or share her page.
We sincerely appreciate each and every gift.
Bec Schwenk
Organizer
Bec Schwenk
Organizer
Griffin, QLD