24/12/17 UPDATE: Baby Sam has lost his battle, please refer to the message on 23 December from mum, Paula. ------ Sam went in for open heart surgery on 5 September. Still he remains in the paediatric intensive care unit at the Lady Cilento Children’s Hospital, 80 days after his admission. As yet, brave Sam has spent over one quarter of his life in hospital. Sam has faced a variety of complications after his initial surgery and hit hurdle after hurdle requiring numerous complex surgeries, re-repairs, countless cardiac bypasses, resuscitations, lifesaving drugs, various life supports (including ECMO Extracorporeal membrane oxygenation), inotropes, kidney failure, dialysis, countless invasive lines, many intubations and extubations (and reintubations) and the list goes on. Meanwhile his parents are juggling four children at home, dad’s job and mum’s 80+ day stay in intensive care with Sam. His family wait anxiously in limbo as Sam remains critical. ------------- At only eight and a half months old, Sammy has endured more than most will endure in a lifetime. He has had three open heart surgeries, his sternum was kept open for four weeks, and he has been fitted with a pacemaker. Sam has spent many days on sedation and paralysis drugs to allow his little body to heal and to stop him from feeling his pain. At his weakest, he was on life support for three weeks. Everything that could go wrong has, yet brave, strong Sam defies the odds and fights on, surprising his doctors and nurses. Having been a long term resident, Sam is a well known and loved patient at Lady Cilento, his mum and family familiar faces in the ICU. Sam’s Family: Sam is the baby in a family of five beautiful kids. While Sam has been hospitalised, with his mum at his bed side, family life has been more than disrupted with dad having to step up into the role of mum as well as dad. Sadly, Sam and Sam's mum have missed the birthdays of Mr 7 (now 8) and Miss 12 (now 13). Sam's mum listened the normalcy of laughter and fun of the most recent birthday celebration via speaker phone as Sam was too unwell to be left alone. The small things: Seven weeks went by without a cuddle between Sammy and his mum, he was too critical to be able to be lifted from his bed. With the help of four nurses, the long awaited cuddle took place, and it went on for four hours. Sam's mum describes the cuddle as 'the best 4 hours! Felt remotely normal for a small moment in time!' Helping other babies: Sam's mum has been at his side every day, expressing milk for him, even when Sam was so weak that his body was unable to digest it. Sam's mum has recently become a milk donor after racking up nearly 300 bottles of breast milk in the hospital freezers. It is of some consolation to Sam’s mum that her milk is helping nourish other sick babies at Lady Cilento Children’s Hospital. More trials: Being hospitalised and attached to many tubes and wires is very risky in itself as it often leads to infection. The most recent update is that Sam has acquired an extremely rare fungus and also rotavirus. Currently the fungal infection is the most dangerous item on his list of ailments. Why donate to Sam and his family: The next milestone is Christmas. This is to be Sam's first Christmas, how do you even think about celebrating Christmas when your family is torn in half and Sam's prognosis is critical. While we cannot stop the rollercoaster ride for Sam's family or bring this precious baby home, we can reduce some of the financial burden. The bills keep rolling in despite having a baby in the hospital, and life must be kept as normal as possible for the other children. Mum maintains vigil at Sam’s bedside so when he wakes he knows he is safe. Dad works his job and also looks after the other four kids, visiting Sam and Mum when they can. Dad is now being made to choose between going to work to bring home a salary, and seeing his son as all his leave has been exhausted. Looking into the future, if and when Sam is released from hospital he will face ongoing hospital visits and will have heavy medical requirements. Although the extent of these are not yet known. #babysam #forbabysam #weloveyousam