1 December

Up to 2ml EBM per hour.
The abdominal swelling was still a concern, so they x-rayed. Air was found in the abdominal cavity, which means there is a leak from the bowel from a tear. Various options were then discussed – do nothing & hope it heals itself, insert a drain to release the air, or have surgery. This last option was eventually decided upon, as the tear may be an indication of NEC (bowel infection). I called Mark, who left work and came straight down. There was a debate about where to do the surgery, as the only people in the state who can do it were either off work that day or at the Women’s & Children’s Hospital. They began to prepare a transfer cot just in case Max had to be taken to WCH. In the end, Dr Kirby and team came to Flinders and performed the surgery in the unit.
We were given a lot of information very quickly. We realised Max could, quite possibly, only have an hour to live, and we hadn’t told anyone. We felt very alone, yet didn’t want to call people with no real information other than ‘he’s having surgery’.
We asked for him to be baptised, which was done by Rev Margaret Rowell, Anglican Chaplain at FMC. She was wonderful and the ceremony was quiet and sombre. I was so shaky that we only have a couple of fuzzy photos of the event. Such a different ceremony from the celebration we wanted to have for him. However, I wanted to know he’d received that sacrament before we lost him, should it happen.
We sat in a quiet room after signing all the forms, and cried together. He’s only nine days old. He’s so tiny. We realised how much we desperately wanted him. We waited.
The short story is that the bowel was indeed infected with NEC and 8cm was removed. He now has an ostomy (two ends of bowel protruding from his abdomen), which will remain there until he is well enough and big enough for it to be re-sectioned. While he is still alive, and this in itself is amazing, there was a concern that the bisection of the bowel may have been made too close to the stomach, meaning that there may not be much length between the stomach and the stoma for him to be able to digest food properly.
We called family, we stayed the night. Max fought hard to stay with us.