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....

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...