Day 94 Postpartum. Counting down the days...

Vinnie has been doing great and we are feeling so proud of our little man. We have one more week of the steroids to go and he is on a very low dose now. I am certain that he won't even notice once he is completely weaned off. On Sunday night Vinnie went on to low flow oxygen - straight oxygen without the pressure and humidified air that he was on before. The amount he is getting will be weaned over the coming weeks and months. Once we get him home we'll have this set up at home... a huge oxygen cylinder by the front door with tubes running all over the house and a smaller portable tank for outings. Hopefully he'll only spend a maximum of 6 months on oxygen before coming off it completely.

Now that Vinnie is on low flow oxygen and the steroids are almost finished it means the end is very near! The last box to tick is to have him fully feeding (breast or bottle I have now resigned myself to - whatever works best for him). He still seems to be struggling with coordinating his breathing and swallowing which is disappointing for everyone... I so just want him to get it! It is highly possible that he might be sent home with a nasal gastric line so that we can continue to tube feed him at home. Not the end of the world and it will be great to just get him home, but it is not exactly how you imagine feeding your baby. The idea of sticking the tube down his nose in to his stomach doesn't thrill me either, but Cam and I will get a crash course in this so we know what we're doing. It will just be a temporary measure until his airway is stronger and he can manage not to aspirate the milk in to his lungs.

Anyway, such a small thing to concern myself with after everything he has been through.

I still have heaps to do at home in terms of setting up Vinnie's room and getting myself organised for him coming home. Once he is home we will be hibernating for the winter. I think I might have mentioned in an earlier post that it is really important that we keep ourselves and the little man bug free this winter. If he catches a cold it could turn in to a respiratory infection and land him in Starship Hospital. This would be a huge step backwards and after 4 months in hospital (by the time he comes home) I am sure you can all understand that I don't want to come back anytime soon!

I know that heaps of people are dying to meet Vinnie (and we are looking forward to showing him off) but it might have to wait a few more months. So, we want to ask that we don't have any unannounced visitors once we get home, no children (daycare and schools are breeding grounds for germs) and obviously no snuffly guests. If you do come around you will be asked to cleanse your hands with the anti-bacterial sanitising solution... just warning you in advance! Hope I don't sound ultra-paranoid and neurotic but we won't be taking any chances. Thank you to everyone again for your friendship and understanding. Once he comes off the oxygen I will relax a little :-)

Here are some recent pics of Vinnie taken since my last post. He actually feel asleep in the bath after those pics were taken... he was so relaxed. You can also see Vinnie having a snooze in the sling I am wearing - never thought I would be following the 'attachment parenting' school of thought and wearing slings, demand feeding etc, but yep, I will be. The kid is going to be super spoilt and completely indulged! He isn't far off smiling and has starting making cutes little baby noises the last week.

Day 86. Naked tummy time.

Now that Vinnie is a big boy (by NICU standards) he is starting to do a few more normal baby activities like tummy time - which is he loving! Must be kind of nice losing the nappy for a few minutes each day. He is also enjoying his baths and loves his musical toys that play the nursery rhyme tunes (a big improvement on me trying to sing these to him!).

Vinnie has been doing really well these last few weeks and now has only two weeks to go of the steroids. The high flow oxygen has also been weaned down to 1.5 litres and is dropping to 1l tomorrow... once we get down to 300ml he will be on low flow oxygen which he can go home on - yipee!!!

The only thing we need to sort out still is the feeding. I was starting to get a bit despondent about the lack of progress in this area, but it seems as though he is having trouble coordinating sucking and swallowing... something that we just take for granted. Some babies with chronic lung disease often have weak airways and it can take them a long time to learn to feed. When they try to swallow the milk often ends up in the airway and is aspirated in to the lungs... not a good thing at all. This may mean that Vinnie will be feed through a tube for a little while longer until he gets bigger.

I had a really nice Mothers Day yesterday. The NICU nurses made these gorgeous cards for all the mums that had our babies footprints on... really sweet. Cam also helped Vinnie with a card and gift for me :-)

Definitely feels like we are on the home straight now. Hopefully we'll have the little guy home sometime in June without having to spend time in Starship. I guess it all depends on what happens with his feeding over the next couple of weeks. It does look as though his breathing is getting better, but he will still be sent home on oxygen.

Day 78 Postpartum. Happy due date Vinnie!

Yesterday (1st May) was Vinnie's due date - he is now officially a big baby in the neonatal ward! Our little boy has been doing well and continues to make good progress with both the steroids and high flow (he is slowly being weaned off both). He is now half way through the steroid course - 21 more days to go! The high flow pressure was turned down again this week and he doesn't seem to have noticed. All good news but I still find myself feeling extremely anxious watching for subtle changes in his oxygen each day. I so badly want to see Vinnie do well the next few weeks so we can hopefully start planning for him to come home.

Vinnie is starting to look very chubby - a side effect of the steroids. He is getting a little moon face from the drugs (cute on babies but not on adults, so I am told), this will go down once he finishes the steroids. Another side effect of the steroids is that babies often get very grizzly and ravenous when feeds are due. Vinnie is definitely a lot less grumpy since he has come off CPAP (understandably) but has his grizzly moments throughout the day. I am not sure whether this is just him or the steroids? The poor little guy has a lot to grizzle about anyway so we'll let him off (blood tests, blood pressure, suctions, sticky tape on his face, tubes up his nose... the list goes on).

Mum and Dad were down today and Grandad/Poppa/Bren got to have his first hold with the little guy. Dad is insisting that he wants to be called 'Bren' by Vinnie, which I think is terrible! I personally think he suits Poppa much better!

Still trying to get the breastfeeding established although this is not easy. I appreciate that this can be hard under the best of circumstances but our situation is far from ideal. The combination of my limited milk supply and Vinnie's illness are making this very tough. Although it is tempting to try bottle feeding this is actually harder work for Vinnie, so we will persevere a little longer. It is such a performance though... supplementary feeding tubes and nipple shields really detract from the whole experience. Although I feel like a big failure I certainly deserve a gold medal for effort.

Something that will be nice for Vinnie though is that I have secured some donor milk for him... this will be far nicer on his digestion than the formula (hopefully less wind for bubs). One of the other mothers at NICU is leaving with her little girl next week and has two freezer draws fill of milk that was going to go to waste. Luckily she is happy to donate it to us so I was pretty happy about that. Most other countries have a milk banking service but not little old New Zealand - which is a shame as I would love to not have to supplement with formula.

My career as a milk cow feels somewhat short lived and unfulfilled...

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!).