Day 58 Postpartum. The never ending rollercoaster.

We've had an emotional few days with Vinnie having a huge set back and now a change in his treatment plan. Things seemed to be going well with the steroids for a while and then on Thursday Vinnie's oxygen shot up to 100% and he was rushed back to level 3 and almost had to be ventilated. We are not sure why this happened. Initially they thought he perhaps had an infection and was given a course of antibiotics whilst they tried to grow a culture. The tests ended up showing no infection present. They are still not entirely sure what happened but it would seem that Vinnie did not respond well to being weaned off the dose of steroids he was on.

Vinnie has since stabilised and moved back to level 2, but he really seems to have plateaued in terms of progress. They increased the steroid dose again on Thursday which helped to bring his oxygen levels back down to a level where he is not required to be ventilated. He is still very dependant on the CPAP machine though and his oxygen requirement is too high to allow him any time off this.

Today Cam and I met with one of the consultants to discuss Vinnie's condition and treatment options. He described Vinnie's Chronic Lung Disease as 'severe' and they now want to start him on an aggressive 42 day dose of steroids (high dose) from tomorrow and wean him off much more slowly. We are really hoping that this works. If it doesn't then Vinnie will most likely be moved to Starship Children's Hospital in a couple months and will fall under the care of the respiratory team there. We are not really wanting to consider that as an option right now.

The consultant really laid all the cards on the table in terms of his condition, treatment options and prognosis (as much as they can say - they don't have a crystal ball to see how he will respond to this treatment). There is a very real risk of Vinnie developing a disability in time. Around 4% of term babies develop some form of disability compared with between 10-15% of preterm babies. Babies with Chronic Lung Disease have around a 30% chance of disability. I know I should really be focusing on the 70% but those numbers still scare the hell out of us.

Vinnie has grown so much now (2.85kg) and he seems gigantic compared with all the other babies in his room! This makes it even harder as it really feels like we should be taking him home. And we should, he is 37 weeks now and considered full term. All these smaller babies seem to be progressing faster than Vinnie and doing so well. Saying that though, there are a lot of other babies that are also facing a longer stay at NICU. I have spoken to a few other Mums at NICU and heard some of their stories and there are a lot of brave families here. Babies born as early as 24 weeks (one woman only found out she was pregnant at 23 weeks and gave birth the following week... crazy huh?) and little ones having brain surgery... heartbreaking stuff.

Today was quite a special moment for Granny as she got to have a cuddle with her first grandchild... she had to wait 8 weeks for that cuddle and I didn't think we'd get him back!