- R
- T
Penny Rose was born a micro preemie at only 25 weeks and 5 days old weighing the tiny 870g. My engagement ring could slide up her arm to her armpit when she was born. It’s hard to imagine a baby can be so tiny until you see one with your own eyes, though they are fully formed physically just without the fat around the body making them very teeny and translucent. Even though Penny was tiny she had a great deal of might & still to this day is determined to overcome every hurdle.
Penny has spent 166 days in hospital out of her 322 day life thus far. 121 days in the Neonatal Intensive Care Unit (NICU) at the Mother Maters Hospital and 45 days in Paediatrics Intensive Care Unit (PICU) at the Queensland Children’s Hospital both in Brisbane. She has been rushed to emergency 3 times since coming home and has appointments every other week between 15 different medical teams to give Penny the best outcome in life she possibly can have.
Trying to keep the intense and traumatic experience short, Penny’s start to life was very rocky with the uncertainty of her survival. A feeling no parent should ever have to feel. Penny unfortunately fell ill several days after being born and she began having seizures. After tests she was diagnosed with E coli Meningitis, a very serious infection particularly in premature babies and the ripple effects just kept on coming. Penny sustained a Cerebellar haemorrhage and developed Hydrocephalus (a build up of fluid in the cavities deep within your brain) placing extra pressure on her brain which can lead to brain damage and other medical concerns. After 8 weeks of expansive amounts of antibiotics, seizure medication, 2 blood transfusions, 1 sedation, breathing support, 2 lumber punctures and weekly ultrasounds she was announced cleared and infection free only to relapse with the Meningitis for the second time 8 days later.
The second time Penny developed Ventriculitis, due to the Meningitis being such an aggressive infection which caused inflammation of her ventricles in the brain that are responsible for containing and circulating spinal fluid. It’s like a tornado or tidal wave hit an area leaving nothing but debris and destruction behind. This was what was happening in her tiny little un-developed head. The debris caused a partial blockage to her 4th ventricle which is further down the back of the skull which leads to the spine restricting CSF (spinal fluid flow). Therefore her head started to swell. Neurosurgeons would have to perform a TAP of the ventricles (a needle through the brain) to drain the fluid off alleviating pressure. She had over 6 head taps performed to bypass time before surgery once she was cleared fully from the Meningitis.
Surgery required a Shunt to be inserted into her head with a pipe leading from her ventricle to the shunt device then another pipe inserted to redirect the fluid to her peritoneal pocket in her tummy for her body to absorb. Commonly known as a VP Shunt. Penny’s shunt latest 5 months before having yet another head TAP followed by surgery to replace the valve after a build up of CSF was found on her brain yet again making her incredibly poorly. This time the pressure on her brain caused her eyes to slightly turn inwards, not the mention the bucket loads of vomit everywhere. After her second surgery and being discharged we spent 8 days at home before being rushed back to the emergency as something wasn’t right. Her belly was enormous. She stopped feeding and although she was happy it’s not normal and Penny has no margin for time to wait.
Turned out her peritoneal pocket was not absorbing the CSF and after another surgery to have the tubing removed to be drained externally for monitoring the surgeons drained over 900mls of CSF from her tummy. Penny had also contracted another infection (which is common when there is a foreign object inserted in the body) and placed on strong antibiotics again for a 15 day course before another surgery.
During the hospital stay, Neurologists, Neurosurgeons, Infectious Disease Team & Paediatricians all worked together to discover where we were to go from here. There were and have always seemed to be road blocks with Penny’s medical concerns challenging all teams involved from the very start. A highly stressful time filled with uncertainty, worry and sleepless nights.
Penny was then placed on the list for surgery for the 4th time to have her shunt tubing redirected into her blood stream that travels to her heart and pumped around the body then absorbed this way. Penny’s surgery couldn’t come soon enough. She became very poorly, pale, lethargic, reduced feeds, blue colouring around her eyes and vomiting everywhere. Again more fluid built up on her brain requiring Neurosurgeons support to again bypass time until surgery. Gradually deteriorating, her surgery now classified as an emergency high risk operation being so close to the heart was carried out and the VA Shunt was inserted. Neurosurgeons found her tubing from the shunt to the ventricle had blocked causing her to become unwell before surgery.
Amongst all her urgent medical needs and hospital stays Penny is also working closely with Physiotherapists on her developmental milestones as she was diagnosed with mild to moderate Cerebral Palsy mid-year. Not only has Penny faced a long list of health and medical concerns related with being a micro preem, she’s also faced and overcome a several life threatening infections and conditions.
Penny now 10 months old or 7 months corrected has quite the medical history.
- 3 blood transfusions
- 4 Lumber punctures
- 8 head taps
- 2x Meningitis infections
- Ventriculitis
- Hydrocephalus
- Brain haemorrhage
- 7 sedations
- Seizures
- 4 brain surgeries
- 2 different shunt devices
- 3x Xrays
- 2x MRI scans
- Over 20 ultrasounds
- Easily an A4 page of medication
And I honestly couldn’t tell you how many times she’s had blood taken or IV lines inserted.
Despite every challenge, every set back, every hurdle she has somehow made it through. She’s such a happy, cheerful, sweet, cheeky and very talkative baby. We have a long way still to go but she is just perfect. She has touched many hearts and we’ve had our hearts touched by many many nurses, doctors and specialists teams who have cared for Penny since she was born. We will be forever grateful for these incredible angels who dedicate everything to helping babies and families get through some of the most rough and traumatic experiences of their lives.
Penny you are so resilient. You’re a little trooper. Mummy’s little rock star and daddy’s little sunshine. We are so proud to be your parents. Keep fighting and stay strong.
Penny has spent 166 days in hospital out of her 322 day life thus far. 121 days in the Neonatal Intensive Care Unit (NICU) at the Mother Maters Hospital and 45 days in Paediatrics Intensive Care Unit (PICU) at the Queensland Children’s Hospital both in Brisbane. She has been rushed to emergency 3 times since coming home and has appointments every other week between 15 different medical teams to give Penny the best outcome in life she possibly can have.
Trying to keep the intense and traumatic experience short, Penny’s start to life was very rocky with the uncertainty of her survival. A feeling no parent should ever have to feel. Penny unfortunately fell ill several days after being born and she began having seizures. After tests she was diagnosed with E coli Meningitis, a very serious infection particularly in premature babies and the ripple effects just kept on coming. Penny sustained a Cerebellar haemorrhage and developed Hydrocephalus (a build up of fluid in the cavities deep within your brain) placing extra pressure on her brain which can lead to brain damage and other medical concerns. After 8 weeks of expansive amounts of antibiotics, seizure medication, 2 blood transfusions, 1 sedation, breathing support, 2 lumber punctures and weekly ultrasounds she was announced cleared and infection free only to relapse with the Meningitis for the second time 8 days later.
The second time Penny developed Ventriculitis, due to the Meningitis being such an aggressive infection which caused inflammation of her ventricles in the brain that are responsible for containing and circulating spinal fluid. It’s like a tornado or tidal wave hit an area leaving nothing but debris and destruction behind. This was what was happening in her tiny little un-developed head. The debris caused a partial blockage to her 4th ventricle which is further down the back of the skull which leads to the spine restricting CSF (spinal fluid flow). Therefore her head started to swell. Neurosurgeons would have to perform a TAP of the ventricles (a needle through the brain) to drain the fluid off alleviating pressure. She had over 6 head taps performed to bypass time before surgery once she was cleared fully from the Meningitis.
Surgery required a Shunt to be inserted into her head with a pipe leading from her ventricle to the shunt device then another pipe inserted to redirect the fluid to her peritoneal pocket in her tummy for her body to absorb. Commonly known as a VP Shunt. Penny’s shunt latest 5 months before having yet another head TAP followed by surgery to replace the valve after a build up of CSF was found on her brain yet again making her incredibly poorly. This time the pressure on her brain caused her eyes to slightly turn inwards, not the mention the bucket loads of vomit everywhere. After her second surgery and being discharged we spent 8 days at home before being rushed back to the emergency as something wasn’t right. Her belly was enormous. She stopped feeding and although she was happy it’s not normal and Penny has no margin for time to wait.
Turned out her peritoneal pocket was not absorbing the CSF and after another surgery to have the tubing removed to be drained externally for monitoring the surgeons drained over 900mls of CSF from her tummy. Penny had also contracted another infection (which is common when there is a foreign object inserted in the body) and placed on strong antibiotics again for a 15 day course before another surgery.
During the hospital stay, Neurologists, Neurosurgeons, Infectious Disease Team & Paediatricians all worked together to discover where we were to go from here. There were and have always seemed to be road blocks with Penny’s medical concerns challenging all teams involved from the very start. A highly stressful time filled with uncertainty, worry and sleepless nights.
Penny was then placed on the list for surgery for the 4th time to have her shunt tubing redirected into her blood stream that travels to her heart and pumped around the body then absorbed this way. Penny’s surgery couldn’t come soon enough. She became very poorly, pale, lethargic, reduced feeds, blue colouring around her eyes and vomiting everywhere. Again more fluid built up on her brain requiring Neurosurgeons support to again bypass time until surgery. Gradually deteriorating, her surgery now classified as an emergency high risk operation being so close to the heart was carried out and the VA Shunt was inserted. Neurosurgeons found her tubing from the shunt to the ventricle had blocked causing her to become unwell before surgery.
Amongst all her urgent medical needs and hospital stays Penny is also working closely with Physiotherapists on her developmental milestones as she was diagnosed with mild to moderate Cerebral Palsy mid-year. Not only has Penny faced a long list of health and medical concerns related with being a micro preem, she’s also faced and overcome a several life threatening infections and conditions.
Penny now 10 months old or 7 months corrected has quite the medical history.
- 3 blood transfusions
- 4 Lumber punctures
- 8 head taps
- 2x Meningitis infections
- Ventriculitis
- Hydrocephalus
- Brain haemorrhage
- 7 sedations
- Seizures
- 4 brain surgeries
- 2 different shunt devices
- 3x Xrays
- 2x MRI scans
- Over 20 ultrasounds
- Easily an A4 page of medication
And I honestly couldn’t tell you how many times she’s had blood taken or IV lines inserted.
Despite every challenge, every set back, every hurdle she has somehow made it through. She’s such a happy, cheerful, sweet, cheeky and very talkative baby. We have a long way still to go but she is just perfect. She has touched many hearts and we’ve had our hearts touched by many many nurses, doctors and specialists teams who have cared for Penny since she was born. We will be forever grateful for these incredible angels who dedicate everything to helping babies and families get through some of the most rough and traumatic experiences of their lives.
Penny you are so resilient. You’re a little trooper. Mummy’s little rock star and daddy’s little sunshine. We are so proud to be your parents. Keep fighting and stay strong.
Organizer and beneficiary
Selena Lucas
Beneficiary