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!

Day 115 Postpartum. Fancy feet...

Well, it has been another week of set backs I'm afraid. We thought we were so close to taking Vinnie home but it would seem he is not quite ready yet. On Tuesday he had a bit of an episode and his oxygen requirement when up from 750ml to 2 litres of flow... quite a lot really. He was supposed to be going down to 500ml until he started de-saturating and went a blue/grey colour.

SCARY!!!! That little episode made me realise that as much as I would like to take Vinnie home, not until he is stable. I can't imagine how tough it would be to get him home and have something like that happen. So we are staying in NICU for a bit longer.

So why did that happen when everything was going so well? It would seem that the steroids were masking the symptoms of his chronic lung disease. They work by reducing the inflammation in his lungs, but once the effect starts to wear off, the inflammations returns and effects his ability to breathe.

One of the consultants explained his condition quite well by saying that basically the only treatment for chronic lung disease is growth. Vinnie just needs to grow new lung tissue and while he is working on that they give him supports such as steroids and oxygen to aid his breathing. Luckily he is a baby and his lung tissue will continue to grow for the next few years. Although he will go home on oxygen, hopefully he will be off it around his 1st birthday. Although Vinnie is going to be a candidate for asthma and susceptible to respiratory infections he should be relatively fine, but not likely to ever climb Mt Everest or compete in the Tour de France.

So, in the meantime we just have to continue riding this out and waiting for him to get bigger and stronger. Vinnie is now on a new course of steroids for the next two weeks and already we have seen an improvement in his breathing and his O2 has been reduced to 1 litre. It will be interesting to see how he copes next time he comes off the steroids. Hard to say how much longer we'll have in hospital. Looking like a minimum of 1 month, but potentially could be much longer.

For the time being Vinnie will remain in NICU but they are still talking about transferring to Starship at some point. Before this can happen they have to have bed space and Vinnie has to have his second round of immunizations. This is going to have to wait until he is finished the steroids though as they reduce the effectiveness of the vaccines. Starship is rife with bugs and we do not want him picking up a respiratory infection on top of his chronic lung disease... that would be very, very bad and a huge setback.

Vinnie is now weighing in at over 4.5kg (10 pounds) and is starting to outgrow some of his cute little newborn outfits. Thank you to everyone for the gorgeous outfits you've gifted him. It is always one of the highlights of mummy's day dressing him in something ridiculously cute! Check out the dinosaur outfits and booties!

Day 107. It's a waiting game...

I am so over going to the hospital each day! It has been AGES!!!! I am also getting increasingly frustrated with having no plan. (I know, live in the moment, stop trying to plan.) I really should stop asking the staff so many questions, because it feels like every doctor/nurse I speak to has a different opinion. Particularly around when Vinnie will be able to go home.

I am really just frustrated at myself for thinking this way though. I know it isn't their fault and they don't possess physic powers... it is all dependant on how Vinnie's lungs improve and nobody can speed up that process. I feel like having an adult sized tantrum. It is probably going to happen any day now...

Looking on the positive side of things, Vinnie is making progress, albeit slowly. (I sound like such a pushy parent already.) Last night he had another oximeter run to show how he is doing on the current setting of 750mls of oxygen. It was looking good so they are going to try him on 500mls tomorrow. We are really hoping that he copes with this as on Wednesday they will then be starting to make some decisions around whether he is ready to go home, or on to Starship Childrens Hospital. If he copes with 500mls it is highly likely he will be sent home on this amount. If he needs more than this, off to Starship we go.

Although a trip to Starship wouldn't be the end of the world, and it would only be for a short while (again, no one can really say how long, except that it won't be forever!), I am still not excited about the idea. Rather than being in an intensive care ward (with 24/7 care from the nursing staff) he would be in a ward with me looking after him full time and nurses checking in throughout the day. Although I'm excited about the idea of spending all my time with Vinnie, I would much rather be doing this at home.... with the help and company of my husband.

Oh well, we'll just have to wait and see how he does tomorrow night. Vinnie is doing much better with his feeding though and seems to have gotten over his aversion to having things in his mouth... except the dummy. You know that expression 'spits the dummy'? Well, Vinnie does that, literally, with his dummy. He used to love it, but now he gags on it and spits it out.

On Friday afternoon we went down to radiology in Starship (Vinnie's first trip away from the 9th floor!) so Vinnie could have a videofluoroscopy (a what?!!). This is basically a swallow test they do to ensure that babies aren't aspirating liquid in to the airway/lungs when they swallow. It involved Vinnie having to drink this white chalky liquid called barium which shows up on the xray. It is really sweet and he absolutely devoured the stuff... swallowed 20mls in only a couple of minutes. He doesn't seem to enjoy breast milk that much! Kids... honestly, no thanks at all.

The good news is that there is absolutely nothing wrong with the way he swallows, and he is going to get this whole feeding thing one day. Vinnie will have to go home with a long term nasogastric feeding tube so we can top him up after a bottle/breast feed as he gets tired really easily still and falls asleep about 15 minutes in to a feed. Cam and I had lessons in inserting one of these tubes last weekend. I'm starting to feel like a nurse with all the care duties we are doing for Vinnie.

On Sunday night I was clipping Vinnie's fingernails (while he was sleeping like an angel) and I accidentally nicked the skin on his thumb. I felt like the worst mum in the world! I was crying, he was crying, the nurse was trying to console us both. To make matters worse, I called Cam to tell him what I'd done and he was so nice to me. "Don't worry honey, it won't be the last time you hurt him. He isn't going to remember this". Sometime last year Cam was clipping Olive's (the naughty Maltese mongrel) claws and he cut one too short and made her cry and bleed. I wasn't very nice to him about it... so yes, I felt like the worlds worst wife as well.

That is all our big news for the week. Vinnie is looking super cute at the moment and is making little chitter chatter baby noises. He looks like he is going to crack a smile any day now :-)