Apologies for being late posting our thanks to you all and to let you know the quilt arrived safely. What can I say...it's absolutely beautiful and Marley loves it, your all such a talented bunch :) We really appreciate the effort put into the quilt, it's amazing...thank you all so much :) xxx
Marley was born on 28/04/2011. Due to a complete placental abruption Marley was born with no heartbeat and not breathing. The neonatal team took 23 mins to resuscitate Marley, his prognosis was so poor that we were told he would not survive the night. Marley was placed on a cooling mat and his body temp cooled to avoid further brain damage. Unfortunately Marley was suffering horrendous seizures which proved difficult to control and even though he made the first 24 hrs doctors were not hopeful and advised us to remove Marley from the ventilator. At 8 days old when there were no improvement and an MRI to confirm global severe brain damage we followed advice and extubated Marley.
Marley is a fighter and decided he was not ready to go anywhere. Much to the surprise of all doctors he kept breathing and fighting. We transferred to Ty Hafan childrens hospital for end of life care, however, almost 12 weeks later Marley had just got stronger. We took Marley home on 26th July 2011.
By the time Marley was 5 months old his breathing became quite erratic and he had spent most his time in hospital. Doctors kept saying it was just his brain damage. By may 2012 he was in such poor condition with respiratory issues we were advised to sign a DNR, we had been told that he had a bullae on his lung and that there was no hope. Marley's dad had a nighling doubt and requested a second opinion, there was no bullae but an extremely rare congenital diaphragmatic hernia called a morgagni hernia, his colon and part of his stomach were sitting in his right chest cavity. In June 2012 Marley had surgery to fix his hernia . We came home from hospital in sep 2012 after only having him home for around 30 days since birth. We've not looked back since :)
Due to the hypoxic brain injury at birth,Marley has been diagnosed with Spastic Quad cerebral palsy, epilepsy and chronic lung disease amongst a whole load of other diagnosis's which affect him on a daily basis. Marley is fed via his jejenum due to gastroparesis, receives oxygen, we have a Cpap ventilator for use when his chest is particularly poor and we have a mountain of medication and therapies to keep him healthy.
Marley is the happiest little man with a smile that could melt anyone's heart. He is now 3 yrs old and just started school. His best friends are his big sister Freya and their beagle Tyler :)