BiographyAdelaide was born with no heartbeat and not breathing, pale and floppy after mum suffered a complete placental abruption at home. She was delivered via a cat 1 emergency c section and took 16 minutes to revive. She was intubated and incubated at birth and we were told they didn’t know if she would make the night - if she did the unknown lies ahead.
She suffered numerous seizures for the first 9 days of life until day 9 when she woke and pulled at her intubation tube herself. She was resedated and taken for an MRI scan on her brain which showed Hypoxic Ischemic Encephalopathy (in non medical terms that means brain damage caused by lack of oxygen). We were told her brain injury was severe and they didn’t know how it would affect her or her life, we would have to wait and see how she grew.
The first 12 months were super hard, she spent the first 4 weeks of life in the neonatal unit and failed her newborn hearing screening. At 7 weeks old we learned she was completely deaf in both ears. At 8 weeks old we were told that she was blind but held on to hope that her vision was delayed and this would hopefully come in time, and at 6 months old her vision had finally caught up and other than a small squint all else visually was good.
By around 3 months old it was very obvious Adelaide had Cerebral Palsy and whilst we clung to hope for the best we knew deep down it would be worse. Even today Adelaide is unable to sit unaided, walk or crawl - although in our household we focus on the positives and she does roll over! Her only bit of independence but she uses this movement daily to get where she wants to be, usually in front of the TV!
Adelaide screamed and cried around the clock for the first 12 months of her life, she always seemed in pain due to muscle spasms, reflux disease and her brain neurostorming where she just couldn’t make sense of the world around her. We threw ourselves and Adelaide into every therapy we could find, we researched medications and got a paediatrician onboard to prescribe omeprazole and diazepam and things finally looked good shortly after her 1st birthday.
She was tube fed from birth as she had an uncoordinated suck and swallow and the risk of aspiration was high. At 15 months old she received her first PEG tube and we were so pleased to finally say good bye to the nasal gastric tube that was always stuck to her beautiful face. Not long after getting her PEG surgery she received surgery for bilateral cochlear implants an amazing device implanted into her cochlea organ that gave her access to sounds. Without her external device she is completely deaf but she does hear when wearing her external device. At 3 years old she said her first & only words which is mum (um) dad, home and per (nanny pearl). At 4 years old her seizures returned causing status epilepticus where she seized for nearly 1 hour and nearly had to be intubated again. She had 8 seizures back to back in the space of 3 hours and was diagnosed and given medication which thankfully has kept them under control now for nearly 2 years.
Recent x rays have shown she now has a mild scoliosis and her left hip is slowly coming out so we are more than likely looking at hip surgery as she grows. She attends school now, an amazing specialist setting school with all her therapies, nursing and paediatricians onsite. She has really flourished since going to school and her communication skills are really taking off, she will start year 1 this September.
She’s 5 years old now and as well as being a little sister she has also became a big sister and whilst she definitely finds her 2 year old baby brother annoying at times she certainly does love him. But her sisterly love with her 9 year old big sister is like no other, she looks to her for play, comfort and giggles. She’s a really happy girl despite all her struggles and oh so loved. We are so grateful to be receiving a blanket from Love Quilts as Adelaide loves to snuggle and we know she will cherish it.
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