Almost tube free!!!

The last month seems to have flown by and Vinnie has made progress in leaps and bounds. A few weeks ago his oxygen was turned down to 1/8 litre (lowest setting) and around the same time I discovered a great website for parents with tube fed children. It was a huge source of information for me and has given us the confidence to try weaning the little guy off the NG tube.

Although pediatric nasogastric and gastric feeding tubes are relatively common in NZ/Aust/UK/US (and most westernised countries with a high standard of medical care) the plan for weaning infants/children off them is almost non existent, and the knowledge for how to do so is lacking. Since we have been home we have had a community Speech and Language Therapist working with Vinnie as he was on an NG tube. In the past when I had asked about getting Vinnie to eat orally (bottle/solids) she had provided some info, but the general feeling was 'he will eat when he is ready'. I was told to offer him solids after a tube feed, the idea being that once he had built up sufficient oral skills they could then reduce tube feeds accordingly.

I wasn't entirely satisfied with this approach but at the same time wasn't sure how else to get him to eat. Then I found the website referred to before: http://tubefedkids.ning.com/ This site has been set up by a woman in Tasmania who had a son with an gastric tube and weaned him through a hospital in Austria with a specialised weaning program (after lack of support in Australia and frustration with her local medical team). The site is a forum for parents of tube fed kids (past or present) to share experiences around tube feeding, weaning and provide support for each other.

The principle for tube weaning commonly supported on the site by most parents is a rapid wean (rapid reduction in tube feeds) often referred to as the 'Graz Model', and was developed by the Graz Children's Hospital in Austria (the one with the tube weaning program). When you read through the graz model of tube weaning it starts to make a lot of sense. Tube fed children have no motivation to eat as they are constantly full from tube feeds. They often experience a lot of discomfort from the tube itself and are overfed (on the advice of the dieticians/doctors who calculate feeds based on body weight). Then there is the gagging/reflux/vomiting issues that the majority of tube fed children experience. Hmmm.... sounds a lot like Vinnie I am thinking at this point.

After a few weeks of researching tube weaning and the graz model of rapid feed reduction we decided that we wanted to go ahead and try this ourselves at home. If the home attempt fails we thought we can register for the online coaching program done through the Graz Hospital in Austria. We made an appointment with Vinnie's paediatrician to discuss our idea and plan and he was extremely supportive (much to our surprise and relief!). Some of the other medical team (particularly the speech and language therapist) have not been so fond of our idea but are 'interested' to see the outcome.

Anyway, that was last week and we decided to start the wean on Saturday. The plan was to reduce total feed (1030ml formula per day) by 20% per day over a five day program. By day 5 we imagined we would have a ratty, grizzly, HUNGRY child that hopefully wanted to eat. Some of those symptoms happened a bit earlier and by day 4 we decided to cut out feeds completely ahead of schedule (off our own back.... hey, we are the parents after all, trust your instincts!). I am so happy to report that Vinnie has started to drink from a modified bottle (he can't suck so the milk free flows from the teet) and is having small amounts of pureed fruits/vege/baby rice. He is currently having enough to remain hydrated but we imagine there will be some weight loss initially until he gains enough eating skills/appetite increases. I called the SLT this morning to report our success so far and had to make a real conscience effort not to sound too smug!

At the same time that this has been going on we have also taken Vinnie off the oxygen during the day time (again, off our own back... naughty naughty. Expecting a stern look from the respiratory specialist when we see him tomorrow! We were well aware of his oxygen saturations before we did this though so not completely careless parenting on our part). It is so nice to see him tube free finally! If only during the daytime... I am sure the oxygen will be gone for good by the end of the year.

Aside from trivial stuff like feeding and breathing, Vinnie is also teething. No teeth yet but lots of grizzling and crying (which we hadn't experienced a lot of until recently!). He is still a happy, contented little boy for the most part though (as much as you can be when you are teething and your parents are basically starving you in order to get you to eat!).

Anyway, that is all our news and looking forward to hopefully reporting back on a successful wean in a few weeks time. Enjoy the pics!!!

Growing up fast...

It has been ages since the last entry so have lots of photos for you! Vinnie is now just over 5 months corrected and fast approaching 8 months old. It is extremely cliched to say that time goes fast and they grow quickly... but it is so true.

It seems as though Vinnie has learnt a whole lot of new tricks in the last couple of weeks. He is spending a lot more time on his tummy lately and is just starting to push himself up on to his elbows. Apparently this was always going to take him a bit longer as he isn't as strong through his chest due to his lung condition... he is getting there though. He is almost rolling over from back to front; rolls on to his side at the moment. He is also getting a lot more stable in his high chair and is enjoying standing on his feet (naughty naughty... we are doing exactly what the books say not to do!).

Vinnie continues to make progress with both his oxygen and oral feeds. He is currently on a quarter of a litre but we are hoping that he will be reduced to an eighth of a litre of oxygen flow by the end of October. We have been trying him on solids for the last 3-4 weeks and he is slowly starting to show some interest. Yesterday he swallowed about 2 tsp of pureed fruit and then vomited it right back up! He is still gagging a lot but is making progress.

The main challenge lately has been his terrible reflux / projectile vomiting / slow weight gain. For the last week we have had him hooked up to a feeding pump at night which drip feeds large volumes of formula over 12 hours. We have reduced the volume of milk during the daytime and it seems to be helping control his vomiting (or the amount he is vomiting). Hopefully this will only be a temporary measure as we don't like having him hooked up to another machine and mummy and daddy have to get up in the middle of the night to change the milk... back to sleepless nights. But if it means Vinnie is gaining weight it is all worth it.

Vinnie has been squealing with delight lately and laughing like a loon. He is such a happy, contented little guy and sleeps like a little angel at night. He really is a perfect little baby. (Apart from the whole prem thing. That was very, very naughty.)

Now that the weather has warmed up and Vinnie is doing better we have started venturing out a lot more. Initially it would take me ages to get out of the house as the checklist I am working through is slightly longer than: nappies, milk, clothes, toys etc. Add: oxygen cylinder, extra nasal prongs, leads, tape, NG tube, syringes etc. But I have it down to an almost fine art now and it is only taking a good 15 minutes to get out the door. (I have always been a bit on the tardy side and now I don't have a hope in hell!)

Aside from the occasional outing to improve my feelings of sanity I have also started making a weekly appearance at work. Grandad ('Bren') has been lending a helping hand with Vinnie each week to make this happen. Dad is amazing with kids and it is great that they get some bonding time each week... sorry Dad, hope I haven't just publicly ruined your 'tough guy' image. It is true that even the most macho men are big marshmallows when it comes to Grandchildren and he is no exception!

More photos...

Following on from the last post here are a few photos taken within the last couple of weeks.

Vinnie will be seven months old next week and is just over four months corrected!!!

Little Mr Chatter Box...

Well, Vinnie is certainly proving himself to be a Gee! The little man loves to chat and keeps me very entertained with his constant babbling/chatter during the day. He is a really happy, content little boy who wears a serious expression much of the time, but quickly disarms you with a smile. We have even had a few chuckles out of him this week!

Vinnie loves sucking on his hands at the moment (discovered these a few weeks back) and has started to show a real interest in his toys and is grasping things now. He is a lot more receptive to being on his tummy (for short periods) than he was a month ago and is building up strength in his neck. We put him in his high chair occasionally only because he looks so cute in it! (Not really able to hold himself up in it yet!)

On Sunday it was Fathers Day and we took Vinnie up to Matakana to see Mum and Dad and Cams parents drove down from Keri Keri. It was the first time we had really taken Vinnie anywhere and he had a ball... of course he would with all his biggest fans giving him their undivided attention!

Vinnie continues to grow, although his weight gain has slowed a bit (most likely due to the fact that he continues to vomit after most feeds... this is getting worse rather than better). The doctors aren't too concerned at the moment as he is still within a healthy weight range. We have started introducing solids again this week and while he is showing more interest than he was a month ago, he isn't quite there yet. He doesn't seem to object to food around his mouth, he just has a problem once it is in his mouth... the gagging/vomiting starts and it really isn't pleasant for the poor little fella.

Vinnie is still on half a litre of oxygen but we will hopefully trial him on a quarter of a litre this weekend... I am fairly optimistic that this is going to go OK and that his O2 will be reduced again soon. He has come a long way since he came home 2 1/2 months ago but still has a way to go. Everyone always asks how much longer he will need the oxygen and we don't really know... I'm kind of guessing another 6 months give or take. As his oxygen requirement comes down we are definitely feeling a lot more confident and optimistic about his long term prognosis. Once the flu season is out of the way we will probably come of out hibernation and voyage out a few places.

Here is a video from today... will also post some recent pics separately!

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!

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 :-)

Day 101 Postpartum. Cracked 100 days!!!

Vinnie has now been in NICU longer than any of the other babies on the ward - the old timer! Yesterday was his 100th day... we are saving up the celebrations for when we get him home though.

It has been an eventful week... three steps forwards and two steps backwards (yet again!). On Saturday we were told that Vinnie was being moved out of the isolation room and in to the Parent Infant Nursery - PIN (last stop before home). I had mixed emotions about this as although this is a positive move in the right direction, I was used to Vinnie sharing a nurse with only one other baby. In PIN there is one nurse looking after up to five babies and they expect the parents to be a lot more involved. I have no problem with that part, and between Cam and I we are with Vinnie for 12 hours a day, but we do need to sleep at some point! Also, Vinnie is a big boy now and needs lots of attention and stimulation. Hard to get that from a nurse who is caring for four other babies.

Anyway, off to PIN we went. We had an older nurse looking after Vinnie and his roomies and I wasn't sure how to take her at first. Cam had forewarned me that she was an old 'battle axe' so my antennae were up. She was actually a sweet old thing, but with a very dry sense of humour. There were a set of twins in the room and the mother phoned up on Sunday morning to ask how they had been through the night. The nurse told her - "terrible! They went out to a party last night and didn't get home until the early hours of the morning". She is a bit of a classic and generally gives everyone hell.

On Saturday night they hooked Vinnie up to an oximeter to monitor his oxygen saturations overnight to check that he was on enough flow of oxygen (he was on 250ml). Unfortunately the overnight run showed that he was sitting slightly below where they wanted him so on Sunday we were moved back to a level 2 room and he was put back on high flow oxygen (humidified O2) at a flow of 500ml. They repeated the run on Sunday night and he was consequently put up to 750ml of flow on Monday. Last nights report showed that his oxygen saturations were looking good at this amount, so fingers crossed he doesn't go up again. This was a little disappointing but it is due to being weaned off the steroids... so to be expected I guess. We did get to take Vinnie for a short stroll around the ward before he had to be hooked back up to the humidifier so that was something... kind of boring walking around the hospital though!

With any luck this shouldn't delay getting Vinnie home too much. We are still hoping that towards the end of next week we will either have him home, or be very close to having him home. This really depends on him though! Lots of things seem to be happening at once now. Tomorrow he is having a swallow test done in radiology to assess where the milk goes when he swallows (hopefully not in to his lungs). The drugs are due to finish tomorrow as well - Vinnie will be closely monitored for the next week to see if his oxygen requirement changes again. Soon we will be having a discharge meeting with different doctors, nurses and specialists to make sure all boxes are ticked before he comes home.

It is all go! Just need the little man to cooperate now....