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!