Day 5 - A day on the sun-bed

It was a bit more of a restless night for Jessica – she was fairly unsettled for the first part of the night and her oxygen saturation levels were dropping a little so the team were considering whether to replace the breathing tube at one point and when Louise went in to see her and express some milk at 3am, Jessica was nil by mouth just in case the tube needed to be replaced. Having some time with mummy worked wonders at that point though and within a few moments, Jessica’s oxygen saturation levels had risen back up and she was much more settled and by morning, she seemed to be doing fine on the CPAP, was back to being able to have mummy milk via her nasogastric tube again and there was no more talk of replacing the ventilator.

We were told in the morning by one of the paediatricians that the plan for surgery on Monday was not for the Norwood procedure as we had been expecting but was likely to be to have a stent put in Jessica’s ductus arteriosus to help keep this open so that the prostin could be stopped. We didn’t have the chance to speak to the cardiac team so are waiting to see whether this is the confirmed plan for next week – as we are learning, things change from minute to minute!

Jessica was still quite jaundiced for most of the day and so remained on her little sun-bed with her space goggles on. Later in the afternoon, Jessica decided that she’d had enough of the catheter and had managed to kick this out but as she was producing lots of wet and full nappies, it was decided that this didn’t need to be replaced. Now that the catheter was removed, there was no excuse for Michael not to do a nappy change (he had understandably been a bit nervous of doing one with so many tubes in the way) so daddy got to have his first experience of changing a very full nappy!

Later on, we were able to have lots of cuddle time with Jessica which was fabulous. She really settled down once she was having cuddles and had a lovely long sleep in mummy’s arms.

Our friend Nick, who is a paediatrician popped in to say hello to Jessica and to help explain further about all the machinery around her! Jessica also got to meet her Uncle Paul and Uncle Peter and saw her Nanny and Auntie Twinny again.

She was quite unsettled and jittery in the evening after all the excitement of the day although we have been told that the jitteriness is probably due to having come off the morphine which she was on after her operation. Having some mummy cuddles worked magic though and helped her to settle down. Her jaundice was also improved by evening so she was able to come off the bili-blanket.