Vinnie - Six Months / 3 1/2 Corrected

Just a few more pics of the little guy and some updates on how he is doing...

Vinnie's oxygen was turned down to 500ml last week and the respiratory doctor wants to try him on 250ml soon to see how he goes. He is doing very well... his lungs seem to be really improving quite fast, although he may plateau for a while.

Vinnie is completely refusing the bottle and has been for the last month or so (crazy to think he has been home 8 weeks... it has flown by). We have tried offering him solids but he isn't interested at this stage. Hopefully he will show some interest over the next month or so but we aren't exactly holding our breath. One of the paediatricians that we took him to told us that he may very well be off the oxygen before the feeding tube as babies with chronic lung often don't want to eat with all the negative experiences around their face (i.e. the oxygen tube and the feeding tube). Some of these babies even end up having a line directly in to their stomach (through the belly button I think) that you feed them through to give their face a bit of a break... just a temporary measure (I hope!!!), if it comes to that at all.

Luckily for him he is oozing cuteness so it makes the feeding issues (and projectile vomiting after most feeds) bearable! Developmentally Vinnie is doing very well. He loves sucking on his hands, kicking his legs around, talking and seems to be enjoying tummy time - managed to spin himself around 90 degrees on the floor today.

Oh, and he is getting pretty darn good at pulling the tubes out of his nose and tapes off of his face! One morning last week (very early) I woke up and looked over at Vinnie and all the tubes were out. He had only just done it so still had plenty of colour in his face (blue baby not a good look). We thought we'd snap a few pictures of him without the tubes/tapes... only the flash was a little bright and he looks a little stunned in the photos! And those poor little red cheeks :-(

Vinnie's furry friends

The dogs came home about 10 days ago and they have been super well behaved! Very gentle with Vinnie... a few licks but back off pretty quickly when I tell them to. They have also shown no interest in chewing his toys, or his oxygen tubes (thank goodness!). Vinnie seems quite indifferent towards them at the moment but isn't bothered by them at all.

Monkey Business

It's been a little while since the last blog... feel like I have kind of gotten out of the rhythm so to speak and the little monkey is keeping me super busy, as is keeping the house tidy. My new job title is 'domestic slave'. Although I have a wonderful husband... he cooks, he cleans, he does DIY (and a good job of it)... he is one untidy NIGHTMARE (!!!) at times. Pet hates... he leaves the wardrobe doors open, clothes on the floor and opened mail in inconspicuous places (including the bills, which I always pay - when I stumble across them that is!).

Yes, I am a moaner. Everyone who knows Cam is saying 'get over yourself Tash, you have a great husband'. He likes to remind me what a catch he is too. I did read somewhere once that it is the small things in a relationship that lead to divorce. So Cam, when you read this just try and close those damn wardrobe doors please?

Enough on that. No doubt I will have to make a public apology to Cam in the next blog. However, public apology for this blog goes to my poor mother. Yes, I did give her a hard time in the last blog (a few people, herself included, pointed this out to me). I only do it for the comedy value (admit it... it was funny).

But seriously, my Mum (and Dad), have been amazing this year and I don't know where we would be without the help and support they have given us. To name a few things.... they helped us move back in to our house at Easter after the renovations, well Mum helped, Dad sat around talking and giving 'advice'. Mum made countless trips to the hospital and always turned up with food to replace the bland hospital sludge. They brought down a chest freezer from Matakana filled with frozen home cooked meals (which we are still eating). Oh, and they have been looking after our dogs since February...not sure when they will be coming home either. Maybe when Vinnie starts school (ha ha... just joking!). And of course there have been numerous gifts for the spoilt little monkey (and Vinnie too).

As for Vinnie, he is doing extremely well and I am feeling so much more optimistic about those little lungs of his. (Was slightly concerned for a while that he would be one of these kids that never comes off oxygen.) Since he has been home he has put on over a kilo, which is great as he needs to grow new lung tissue to grow out of this condition. Last week his oxygen was turned down from 1 litre of flow to 750ml. He is doing really well on that and it will most likely be turned down to 500ml in the next few weeks. Feeding is still a bit of an issue. He seems to have lost his suck reflex completely and is refusing the bottle. We are hoping to start him on solids next week but this might not be easy as babies normally suck food to start with. He will get there, but he might be 12-18 months before that NG tubes comes out completely.

Aside from breathing and feeding (such small trivial stuff!) he is doing well developmentally. Vinnie has started exploring his hands a lot more and stuffing them in his mouth. He is a lot more balanced too - legs and arms no longer thrashing around out of control. Also has good head control and support. He is almost sleeping through the night, but sleeping during the day is a bit hit and miss, especially late afternoons. Lots of smiles and cooing noises. Vomits after most feeds (not just small spills, but large projectile vomits) all over himself, his bed, the carpet, and his mother... so the washing machine is pretty much going all day. He is absolutely fascinated by the TV and would watch it all day if he had his way. He is watching it right now with his Dad in fact... hmmm... add that to the list of bad parenting techniques by Cam and Tash....

Cloth nappies or disposables?

So many good reasons to use cloth nappies, right? Well that is what I thought when I bought them anyway.... good for the environment, more affordable and easier to toilet train (what child wants to sit around in a wet cold nappy?). The one selling feature of the disposables that I totally underrated was CONVENIENCE. After using disposables for almost five months at NICU I am finding it a little hard to adjust to the cloth nappies. There is the mountain loads of laundry of course, but I also feel so mean every time I change the poor little guy... they just look so uncomfortable! And they are massive. His clothes are all tight around his bottom and he can hardly kick his legs!

I am really wondering why the bloody hell I bought the damn things. It would seem I like making a tonne of work for myself, because lets face it, I ain't no tree hugger. It might have had something to do with the little bird in my ear? The little bird is not going to appreciate me saying this as she already thinks I give her a public slating on this blog, but oh, what the hell.... that little bird would be my mother (wonderful, amazing mother!) who for many years has rabbited on at me about how revolting disposable nappies are and oh my god, don't even get her started on jarred baby food! It would seem parents these days are all so lazy... so of course I wasn't going to be one of those!

I don't know why I chose to start listening to my mum all of a sudden... and over something as demented as nappies...

One of the nurses at NICU had small children and was an advocate of cloth nappies. She told me she felt virtuous every time she changed a nappy. Hmmm... so far just feeling a tad resentful.

A few people have told me to shelve them and just use the disposables. However, I'm far too stubborn for that and determined to use them now that I have invested in them. Getting Cam to use them has been a little more challenging. We are not being complete eco warriors and are still using disposables at night... a bit of a compromise.

Nappies aside, Vinnie has been doing well this last week (5 months old on Wednesday, 2 1/2 months corrected age). Still trying hard to get him in to some sort of routine, other than the current 'baby-led' routine. Failing miserably on that front. Already Cam and I are forming some very bad parenting habits with Vinnie... rocking him to sleep in the lazyboy and letting him stay up at night with us (help - all the baby books say bed by 7pm... but he won't sleep and we are too soft!). He is going to be one spoilt little monkey....

Home sweet home.

After 5 long months in hospital we were finally able to take Vinnie home on Tuesday. I guess the day had to arrive eventually, but at times it was hard to see the light at the end of the tunnel!

I had good intentions of updating the blog sooner, but what can I say... the little guy has been keeping us really busy! This full time parenting business is actually quite challenging (once upon a time I thought it was going to be such a breeze...), even without the extra issues Vinnie has (little things like feeding and breathing) it is hard work keeping up with nappies, laundry and housework. Tending to a crying baby throughout the night also has left me feeling a little frazzled...

But still extremely thankful and overjoyed to have him home.

Cam took most of last week off work so it was nice to spend some time together adjusting to the new routine of having Vinnie home. I have felt a lot more relaxed (big pat on the back) than I thought I would be. I had visions of sitting in the bedroom with him all day obsessively watching him 24/7... I think that the hospital environment can add to the levels of anxiety. On our first day home Cam went and bought a baby monitor and we were able to relax with a glass of wine and a nice home cooked dinner (by the fabulous Cam of course... my how I have missed his cooking) while Vinnie slept peacefully (mostly) down in our room.

We even ventured outside and took Vinnie for a couple of walks to local cafes for coffee. Normal activities are feeling somewhat abnormal and I am getting excited about the small stuff. (This must be what it feels like for prison inmates when they are released?)

Vinnie is doing amazing well. Quite a few staff at NICU had told me that he would thrive once we got him home and it really does seem to be the case. He is gaining heaps of weight and has been doing so well with his oxygen (confession - I do peek at the monitors occasionally).

Probably the most challenging aspect still is feeding Vinnie. He seems to be getting worse, not better, with his bottle. Lots of tantrums around feed time and 95% (5% bottle for dad. 0% for mum) of it is going down the naso gastric tube. I had been complaining to Mum about this so she offered to come down today to help. I pretty much told her not to expect him to take the bottle for her... but you know when parents know best and want to put in their two cents worth? Well, low and behold the little monkey wanted to take the bottle for her. Albeit, not much milk was taken but he still had a very reasonable attempt. One word for Mums reaction. Smarmy. Very smarmy indeed. (I probably would have been too.)

Today has been my first day at home (alone) with Vinnie. I was kind of dreading it, as feeding him sometimes feels like a two person job and he has been awake a lot during the day. But he has behaved like a model baby today! One that is about to awake any moment now to be feed so I'll leave off here for now...

Day 130 Postpartum. Vinnie gets the green light!

It has been an exciting day as we have finally been given the green light to take wee Vinnie home... it has been a long 19 weeks (21 weeks including my time in hospital prior to his arrival... but who is counting?) and I was starting to wonder when/if this would ever happen.

Today we had a meeting with the neonatologist and a respiratory doctor from Starship to discuss sending Vinnie home. I thought we'd really have to argue our case, but not at all, everyone was in agreement that home is the best place for Vinnie to continue growing. The best place for his development and a normal family environment.

It is kind of a big deal Vinnie being sent home as he is on a litre of oxygen. Babies that normally go home from NICU on oxygen are only on 125ml or 250ml maximum. A litre of oxygen is a very high requirement and would normally mean time at Starship. However, Starship is full of germs this time of year and he seems stable enough for the moment, so we get to take him home along with a whole lot of equipment... oxygen tanks, oxygen condenser, air humidifier, apnea mattress and oximeter.

We will basically be setting up a mini hospital room in our bedroom. Initially we will probably be confined to that room as it is difficult to move the humidifier from room to room, but as he gets better he will come off humidified air (as the pressure is lowered this will be less drying on his sinuses) and we will have long tubes around the house so we can move from room to room with the oxygen. Who knows how long he will be on oxygen... we'd like to hope he'll be off it completely by his first birthday, but it could be longer. Same goes for that nasogastric feeding tube...

The respiratory doctor seems to think that we will probably end up at Starship at some point this winter as it is likely that Vinnie will pick up a cold that could develop in to something more sinister. We are very determined for this not to happen... so we are going to draw a line in the sand and just say no more visitors from this point forward (well, until he comes off oxygen). Grandparents only, and even then we will be making them use the decontamination shower prior to entering the house (well, not quite, but I would if I could).

I have given Cam the third degree about not picking up a cold at work this winter. He didn't much like my ideas about sending around a memo company wide (I have a kid on oxygen so don't come near me with a cold) and refusing to shake hands with anyone. Apparently I am a little OTT. I will be making sure he uses hand sanitising solution like an obsessive compulsive... I can kind of see us both developing weird anxiety disorders from this experience... him with hand washing and me with being confined to the house. Goodbye social life, hello agoraphobia!

As we are going to be hibernating over winter and hiding our baby from the world I will continue to keep the weekly blog going with updates, photos and videos of the little monkey. He has been doing some seriously cute smiles this week (and some not so cute midnight screaming!!!).

Day 126 Postpartum. Vinnie's new nurses.

Vinnie has two new full time nurses looking after him in hospital... that would be Cam and I!

On Monday I was having a bit of a blue day about having to leave Vinnie each night and not having more consistency with the nursing staff. We were having three different staff over a 24 hour period and it seemed like a new nurse each day rather than the usual nurses who we were used to. Leaving your baby in the care of complete strangers is hard, particularly when Vinnie is getting to age where he needs familiarity.

So I had a bit of a meltdown about this and the staff were really good about it. They definitely listen and try to come up with a solution. At NICU they have four parent rooms for parents to stay in with their babies for a night or two before discharge. Basically so the parents can care for their babies around the clock without the support of nursing staff... preparing them for reality and all.

They decided that we could utilise one of these rooms (while they have availability) and that Vinnie could come in to the room with us after a night or two. The first three nights Cam and I were in the room without Vinnie, but still getting up every 3-4 hours throughout the night to feed/change him. On Thursday night they finally decided that he could come in to the room with us. I think they were a bit nervous about it as Vinnie is still on quite a lot of oxygen and would normally need monitoring by a nurse full time. I think they realise though that he is quite stable and providing he is still hooked up to monitors, Cam and I are able to do most of the nursing duties... we have been here long enough to learn.

So, we have had two nights with Vinnie now and are starting to feel more like a family unit. He has been fairly good through the night, waking every four hours (like clock work!) to be fed. He is a little bit noisy... babies with chronic lung disease are a bit grunty, so he has kept us up a bit with his sound effects.

On Tuesday it looks as though we will finally be having the pre discharge planning meeting with the neonatologist and family liaison nurse (NICU) and respiratory team doctors (Starship) to discuss either discharge home or transfer to Starship. The neonatologist looking after Vinnie at the moment seems quite positive about us taking him home on the level of oxygen he currently requires. One of the respiratory doctors came to speak to us last night and he also seemed quite optimistic about sending him home too... trying not to get my hopes up too much though.

They just need to weigh up the benefits/risks of each scenario. If Vinnie goes home he is less likely to pick up any bugs. If he goes to Starship he will be more exposed to respiratory infections by other patients in the hospital. If Vinnie comes home he will also benefit more developmentally... the hospital is just such a drab environment. The big concern with sending him home is that he won't be close to the medical team and support in case of an emergency. So it all comes down to how stable they feel he is and how good a plan we have in place in case something happens.

Which ever way it goes, at least we should have a decision next week... I hope. It has been 18 weeks now and it is time for a change of scenery!