Day 72 Postpartum. Invincible Vinnie!!!

No place to catch a bug like a hospital! Well, lucky Vinnie is Invincible (according to one of his nurses) otherwise he might be a sick little boy considering he has been exposed to both a super bug and the chicken pox in the last week!

On Friday one of the nursing team advised me that one of Vinnie's old roomies had picked up ESBL (nasty staph infection in the gut) and they were going to have to give him a rectal swab... poor baby. Luckily this came back all clear yesterday but he had to go in to isolation all the same (along with the other babies in his room).

Then on Saturday someone came to visit one of the other babies in our room and came down with chicken pox later that evening. Apparently her children had it three weeks prior but she didn't seem to catch it so thought she was fine. (Wouldn't you think you'd stay away from intensive care just to be on the safe side? )

Just goes to show how long these infections/viruses are transmittable for. Scary!!!

Vinnie and his roomies were then given a blood product with the antibodies for chicken pox and we have been told they will be fine. But they could still pass on chicken pox to other babies in the unit so they have to stay in isolation for the next month. Parents/visitors still allowed but we have to keep them away from other babies in the unit for obvious reasons.

Aside from all this drama Vinnie has been doing well. After my last post Vinnie did need to go back on CPAP as he was getting a little tired on high flow. However, they gradually built up his time on high flow each day and he has now been on it full time for 2 1/2 days, which is fantastic. Now they will look at gradually reducing the pressure over the coming weeks as well as continuing to wean him off the steroids. After high flow he will go on to low flow (oxygen without the pressure), which he can go home on.

So far so good! The plan for this week is to focus on establishing breastfeeding, but young man is not cooperating... he is used to being fed through a tube and not having to work for it. Whenever I put him in the position for feeding he starts to arch his back, push away from me with his hands and howl like a demon. I was feeling a bit miserable about it all this afternoon until Mum helped me see the funny side of it. I am sure we will get there - must persevere a bit longer.

Day 64 Postpartum. The baby whisperer...

Vinnie has been doing really well on the new course of steroids - he responds well to the 'roids' as one of the consultants put it. His oxygen requirement has come down to the 20-30's and he is now enjoying some time on high-flow. Yay!!! It is really nice to see him without the hat, chin strap and those delightful CPAP tubes.

He had his first taste of high flow on Friday (90 minutes) and really didn't want to go back on CPAP afterwards. On Saturday he had a 2 hour stint on high flow in the morning and one again in the afternoon. So far so good. More protesting (i.e. screaming and crying for the whole ward to hear!) when he was put back on CPAP. Today they decided to just leave him on high flow and see how he handles it. If he gets too tired he will have to go back on CPAP, but we are hoping that will just be temporary if at all.

He is such a happy little contented baby on high flow. That and the combination of the baby whisperer...

And who is the baby whisperer? Have any of you guessed? Yep, it is Cam. He cooks, he cleans, he settles babies. The last few days when Cam has taken over parent duties from me in the afternoon and gets Vinnie out for a cuddle his oxygen requirements seem to go dramatically down! (Vinnie you little traitor! I carried you for 29 weeks and have battle wounds from your delivery!) Methinks he is going to be a real daddy's boy.

Now that Vinnie is on high flow we are able to start breast feeding. The first few attempts have not been successful, but that is to be expected as his little lungs are still working hard. Now that he is a little older he is having a lot more awake time and it is so hard leaving him each day. Especially if he is awake.

The steroid dose will be weaned throughout the week. We are just hoping and praying for Vinnie to continue making progress and for his little lungs to keep growing. So I ask all of you to either pray for Vinnie's health or visualise him as a happy healthy little boy with strong lungs... what ever floats your boat.

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!

Day 52 Postpartum. Hello dimples!

Vinnie is now weighing in at 2.71kg and I spotted a few dimples on his chubby little arms, hands and legs today! He gained over 200g in the last 2 days, which is a lot. Could be a lot of fluid or just 200g of 'cuteness' as his nurse put it. He is 36 weeks gestation now and is looking much more like a healthy little newborn rather than a prem baby.

Vinnie has been making progress on his steroids over the last week and they have started to gradually wean him off the drugs again. So far so good. He is still very dependant on CPAP and isn't yet ready for any time off it, but his O2 is a lot lower (high 30's) than it was a week ago. He was on high flow (small oxygen prongs up the nose) temporarily while he was bathed today and this is what he will move to once he is ready to come of CPAP.

He has had a few baths over the last week and seems to enjoy the water (not that he has any choice in this as Cam has pointed out - he is going to be a water baby whether he likes it or not!).

Cam and I have now moved back home and are enjoying our newly renovated abode. There are still a few bits and pieces to be finished off but we are nearly there. Nice to be home and have our doggies back (pictured here on our new kitchen tiles!).