Baby Cylis

Dear reader,

on November 18 2019 my 4yr old son set our rental home on fire. Myself & my partner are currently unemployed due to being fairly new to our township & we are full time carers of our 3 children Frez, Chorus, & Cylis aged 5, 1, & 4 months old.

Upon the night of the house fire, myself & my partner stayed up trying to salvage what was left of our home contents in between many falling tears in regards to not knowing how we were goner replace and repair things. The following morning after no rest I went into labour with Cylis. Cylis died inside me for over an hour due to bad calls made by my midwife in which an investigation has now been launched regarding this. I was transferred from Tokoroa hospital to Waikato hospital via helicopter.

Upon arrival there, I was told to push baby out as shes already dead after hours of being told i wasn't allowed to push. When she was still born in breach position, the nurses placed her lifeless body on me and had no intentions of attempting resuscitation. I pleaded with the charge nurse to try something "anything! just bring my baby back! please!" i screamed. So, after a further 17minutes of adrenalin and other resuscitation procedures, my little miracles heartbeat came back.

Afterwards, she stayed 2 months in NICU (Newborn Intensive Care Unit) where she spent alot of time in a deep coma with severe brain swelling. Myself and my partner during this time were in complete shock and traumatized that we were entirely numb. Each day that followed we were being told by the doctors and specialists that its selfish of us if we keep he on life support and that we shoyld let her choose her path but advised we were prepared if she survives to look after a baby with next to no brain activity or control of her body. However, the day came where she gained strength to breathe on her own and the next milestone was developing a suckle. Eventually she did, & was having no problems drinking her bottle; but then it was discovered that she has an unsafe swallow. Baby Cylis takes all liquids fed orally into the lungs rather than to her stomach. Upon this discovery, Cylis had a operation called a Gastrostomy where a g-tube was inserted directly through the stomach wall allowing feeds to bypass her lung passage and allowing a safe way for feeding at home. After NICU, we stayed another month in the Waikato Peadiatrics ward where i had to learn how to use the electric pump, change dressings, properly clean and prepare feeds and medications.

Throughout myself and Cylis's 3month hospital stay, my partner, & 2kids were 98kms away and i had only seen them on 3 or so occasions. We could not afford our daughter Chorus's 1st birthday on November 20th following the house fire and her sisters arrival the day prior. nor my sons 5th birthday on December 17th or xmas presents. We had to cancel my partners 25th birthday on January the 25th as we were apart and could not spend that day together as well as Valentines Day. I also missed out on my sons first day of primary school.

We have since reunited as a family and Cylis requires ongoing extra care and tenderness as she is now disabled and suffers from little brain seizures aswell. She has a hefty list of medications she takes including clonazepam & Melatonin. In short, I have created this page in hope to raise funds to afford a vehicle better suited to Cylis's confortability. Specifically i am needing a spacious car because I cannot risk the equipment she has attached to be torn from her gut by my other children while I drive. I do own a vehicle but it is old, un-warranted & it leaks water through to interior. If you were able to give to this cause It would make a huge difference in our lives & assist us in our daily lifestyle based around Cylis's care.