Today should have been Oliver’s due date. Instead he’s celebrating being 100 days old, in hospital.
Oliver was born at 25+6 weeks after I spontaneously went into labour. He was born at Birmingham Women’s Hospital, an hours drive from Leamington Spa where we live and weighed 2lb 1 oz.
Oliver spent his first 5 weeks in Birmingham where he spent time on and off the ventilator until he was stable enough and until a cot became available at Coventry University Hospital. In Coventry Oliver thrived and was steadily gaining weight and increasing milk feeds as well as slowly coping with less support breathing and moving from CPAP to high flow and then low flow.
We started to regain some normality in our upside down world and things looked good.
When Oliver was 7 weeks we got a phone call, asking us to come in straight away as Oliver was unwell. Oliver had been put onto an oscillating ventilator to help him breathe as his tummy had become so distended his lungs had collapsed. The doctors suspected he had an obstruction or possibly NEC. We were told he urgently needed surgery but we may have to travel up to 2 hours away as Birmingham Children’s Hospital and Leicester Royal Infirmary did not have space. Thankfully Leicester Royal Infirmary were able to make a space. The transport team arrived who were reluctant to transfer Oliver and were told it was highly unlikely Oliver would make the journey as he was so poorly and his chances at surviving a major operation was slim.
We said goodbye to Oliver and made our way to Leicester not knowing if he would survive the journey.
Oliver made the journey and survived surgery where half of his small bowel was removed due to NEC. Necrotising Enterocolitis is very common in premature babies and causes their gut to become diseased and die. It causes high levels of infant morbidity and the causes are still largely unknown. He was still very critical and needed a lot of support and several more blood transfusions and at last count had had 9 transfusions. He had a stoma created and after 2 weeks the stoma was looking less healthy and the decision was made to take him to theatre to insert a broviac line and also look at his tummy again. A further 10-15cm of dead bowel was removed and within days Oliver’s stoma began working and his condition improved.
Now 100 days old Oliver can only tolerate minimal feeds due to his short bowel and his main source of nutrition comes from TPN which is given intravenously. 2 weeks ago Oliver had laser treatment for ROP, eye disease common in premature babies.
We’d hoped to have Oliver home for his due date, Paul’s birthday in October and then Christmas. We were told yesterday this is not possible so we will have several more months of this. He is now outgrowing the neonatal unit and will soon be moved to a paedeatric ward until his stoma is reversed in 2-3 months. Once his stoma is reversed we will hopefully have a better idea of how well he will be able to absorb food and how long he will need TPN for…and when we can finally get our boy home.