28 May

Well, we have been home for ten days now, and it has been a very interesting time. Days are great, with lots of smiles and goos, and a few cries. Nights are a bit more challenging - mostly for me, as I learn Max's routines and work out my own.

He is still struggling with the bottle - though he is taking more than he was last week, and is also showing more 'hungry' signs as well. We are following a strict 4-hourly regime, but sometimes we're starting up to half an hour early if Max is hungry.

One of the medications he's on, Losec, is proving to be a proverbial pain to administer. It is a tablet dissolved in water - but it actually doesn't truly dissolve, rather it breakes down into tiny pellets, which act in the stomach to reduce the reflux issues. Giving this little solution is not Max's favourite time (nor mine), and we struggle every day to get the precious pellets into his stomach and not simply spat back out again!

He had his second visit from the outreach nurses today, and he's now up to 4470g, which is a good gain. Jane (nurse) also hooked him up to a portable oximeter just to check how he's going in terms of oxygen staurations, and he was fine - first number which clicked up was 98%! So, that's a relief. I wasn't really worried, but it is good to know he's doing fine.

We ran out of EBM (breast milk) last Friday, so now we're on normal term baby formula. It's quite depressing that 6-7 weeks' worth of expressing, six times a day, freezing it in our little freezer in the garage, working hard on it all this time, is used up in just over one week. Ah well, at least he got to actually drink it, and it wasn't thrown out!

Photo - an attempt at capturing on film the smiles we are getting occasionally now. We're also getting a lot of true 'baby noises' instead of only the snorts and grunts (which we still get!). Max has had an afternoon out visiting his Chocha, Uncle and cousins, and yesterday he entertained the family at our place, along with some interstate visitors. He was pretty exhausted by the time everyone had gone, and a bit over-stimulated. It took a while to settle him!

23 May

Max is now six months old. Or, ten weeks corrected. He's been home now for four and a half days and we're still trying to work him out. It is strange not having to go to the hospital every day, even stranger not seeing the people each day, but we are getting used to it.

We had a visit from his Outreach nurse on Monday, who checked him over (and us, presumably). He also had a weigh (4320g, up 70g), which he hated.

Basically he's wonderful most of the time. He's very hard at feeding times - we can't work out what's the best way to feed him. We have several bottles and types of teat, and they all have similar results. He's very hard to burp, yet won't feed if he has any air in him, so it all becomes a bit of a drama. He also is very noisy at night. Several other parents have said that this is reasonably normal, all babies are noisy, but we are a bit paranoid about Max's breathing and when he gets so snuffly it seems like he's struggling to breathe it can be scary. But, a minute later he's so quiet I have to get up to make sure he's breathing at all. Go figure.

He is beginning to love baths, but hates getting out. We are very aware of our house's temperature, and are often concerned that Max is cold, so getting out of the bath and getting warmly dressed again is a very speedy experience. He still hates it.

Otherwise, we're plodding along, slowly getting ourselves into a routine of sorts. When Mark goes back to work I'll have to rethink some things, but so far, so good.

18 May

I haven't posted for a few days as there has been much going on and I haven't been home much at all!


On Tuesday Max again came home, this time for about 6 hours and two feeds. he was very well behaved and we broke in almost all his equipment. He even had a sleep in his own bed. We weren't that keen to take him home, but we did feel like we'd taken another step in our apprenticeship. Also, Max is now on breast milk. he took the 4pm feed (at home) very well, but overnight he was terrible - he seemed to actually hate the taste. It almost got to total bottle refusal time. Most depressing for me.

Wednesday we 'roomed in', which means we stayed in the hospital in one of the overnight rooms, and Max stayed in with us. We did all feeds and medications, and all otehr cares. He was a very good boy. We didn't sleep very much, mostly because he was actually quite quiet, and I was paranoid about him stopping breathing. he hasn't apnoeaed (is there such a term?) in months, but I was still worried. So, I stayed awake an awful lot, trying to hear him breathe, and getting up constantly to check on him. Between Mark & I we managed the feeds and both of us got about 3 hours sleep - albeit in 20 minute blocks.

Thursday we stayed the whole day at the hospital and roomed in again. During the morning Mark & Max went for a walk for an hour or so (to make sure our car hadn't been stolen, among other tasks), and I had a sleep. In the afternoon, Mark went home to check on the cats and Max & I played in our room. It was a really good time. I felt really brave to leave him in his cot and go to the bathroom - Max was unwatched for about 3 minutes! That night we slept more, but Max was a bit more unsettled. Good practice. Actually he pulled his naso-gastric tube out (discovered by Mark at 3.45am), so he was taken back into the unit for repairs!

Both evenings we had visitors - other parents from the unit came in and we shared pizzas / Thai takeaway. It was actually really fun and we will miss these people very much. It was so good to actually be with people who get what we're going through. We hope that one of those boys will be heading home, too, in a week or so, and the other one is going great guns (another 'stoma' baby, he had his reversal surgery last week). So, we all hope to keep in touch in one way or another.


We also had a few nurses who weren't going to be working on Friday come in and say goodbye to Max. Actually quite emotional for all of us, but after a few very sad times recently, I hope they think of Max as their own success story.

On Friday all hung on getting a final check over from Dr Scott and waiting to see if he pronounced Max OK to go home. It was rather a long morning as the unit has suddenly gotten extremely busy. A few days ago it was almost empty in level 3 and only 2 bays operational in level 2, but today almost all beds were full, and it seemed as if every parent was in at the same time. Dr Simon had a team of professors from Sweden in to visit and showed them Max - quite fun actually. While we were waiting for Dr Scott (who seemed to be pulled every which way), we played with buddy Brock (no, they're not twins - they just have mums who dress them in the same outfit) - then had a bath and a final weigh. (He actually had lost some weight earlier this week, but seemes to have put most of it back on - he's now 4250g.)



We finally got the go-ahead, then spent time packing up, getting final instructions on medication and feeds, collecting all paperwork and drugs to take home, then a final round of goodbyes. Again, quite momentous and emotional. We have been there longer than some staff members! It will be a very strange feeling, not getting up and going in every day, not seeing all the people who have been almost family for the past six months.

And now, yes, we're home. Max is taking feeds, but very inconsistently. We are trying EBM (breast milk), but only really have enough for a few days, so we've also got a few feeds worth of Term formula as well. We'll see how we go overnight tonight, but we are sticking with the 4-hourly feeds at the moment. Hopefully he'll start to demand them much more, but we won't wake him if he sleeps through at night - we'll just gavage that feed.

It is still a bit odd, having him at home. I suppose all new parents feel that way, and it is nice to actually feel like a 'normal' family at last. We will have lots of medical follow-ups to attend over the next eight years (yes, eight! can you believe it!), and this starts with our outreach nurse's first visit on Monday. (I have already been told it's OK if I answer the door in my pyjamas!) We are booked in to return to the unit for his next set of immunisations (just to make sure he doesn't react badly), so we haven't entirely disappeared from the 'family' of the NNU, but it sure feels odd not being around them.

Welcome home Max.

14 May

Yesterday was our first Mother's Day! I got a lovely present from Max (new pyjamas for getting up in the night to look after baby), in addition to the usual gift and card from the unit staff. They are so good to us all. Some mums in the unit seemed a little down - mostly thoise who expected their babies to be home by now and so weren't really happy about having their first Mother's Day in hospital. I actually didn't care - I was simply happy to be a mum! (pic - bath with Mama!)

We went for a walk in the pram as well - first time - as Max has been good off oxygen overnight. It was quite fun, but when he went to sleep we were nervous about his breathing. He looks much paler in 'real' light than the fluros of the unit.

Today, though, was fantastic. After another good night with regard to his oxygen saturations, we were permitted to take him out on day release (feels like parole!). Yes, Max came home for a few hours!! He fell asleep in the car, was very well behaved at home (only one little grizzle), and we feel a little more confident.

He also has another liver function test this morning - the last count (conjugated bilirubin, I think) was 77, (normal is around 10). We were hoping for around 40-50, but again Max surprises us and he produced a count of 19! So, this means his liver is functioning properly again, which means that he doesn't need to have monogen( the formula he's on), which means he will be able to go back onto breast milk hopefully later this week! We've been waiting for this, as there are two freezers full of the stuff, and we really don't want all those hours of expressing to have been in vain!

We're not sure what will happen this week - we're still hoping he'll be coming home, but as always - we work one day at a time. Today was a good one.

12 May

The last few days have been quite hard, and more than a little frustrating. Max has really been knocked for six by this flu vaccination, with a high temperature and increased oxygen requirements. We have realised that he does not actually have much 'in reserve' with regard to his breathing, and any little bug is going to affect him. We debated the prospect of taking him home on oxygen, just as a backup, but this doesn't seem to be a popular option among the doctors. By today he's off oxygen, and has been since 3pm yesterday. We'll have to simply wait and see how he goes over the next few days. We were to be 'rooming in ' tonight, with a view to taking him home on Monday or Tuesday, but that's not happening now. It's so demoralising.

On the positive side, he is still gaining weight (finally hitting 4kg - actually 4160g as of yesterday), and he's still slowly increasing his consistency in feeding. he's still having minor regurgitations every now and then, and is still very difficult to get wind out of, but he's doing fine. (I won't go into the new surprises recently with his stools - I am assured that a black/green is normal for babies on iron supplements. Just astonishing.)

9 May

Well, he certainly didn't react well to the flu vaccination. He had several desaturations overnight, and he had a high temperature. He is back on oxygen (hopefully for only the day), and when I arrived he was clad only in a nappy, in an attempt to get his temperature down. they had given him a tepid bath as well overnight.

He certainly was grizzly and upset, wouldn't feed well, wouldn't settle unless he was being held, and overall was not a happy boy.

It's quite upsetting, but we're really glad he was still in hospital when he had it, so he can be monitored. In fact, Dr Scott said 'if he's this bad after the vaccine, imagine how bad he'd be if he had the flu for real'. - and he's right. Hopefully it does what it is supposed to do and Max won't get the flu this winter.

We're under no illusions, though, he will probably pick up something. So, we'll just try our best to minimise his chances of exposure to bugs of all kinds. This means we may need to be really strict as to who visits and how they interact with him. He's certainly not going anywhere near shopping centres or child care, and we're asking family members to think carefully about flu vaccines and who they interact with if they're planning to come and visit Max. I hope people don't get upset - it really isn't just us being over-cautious, Max is very susceptible to colds & infections of all kinds, and any bug will mean back to the hospital, possibly even back on the ventilator.

Anyway, one good thing today - he passed his hearing screening test!

8 May

On Monday Max started on a new formula - hopefully the one we will take him home on. Time will tell if he can cope with it - so far it's making him quite gassy and he has far more interesting poo, but not enough to worry the staff!

We picked up all his furniture from the layby, and have installed it in our house. We spent Monday afternoon learning how to adjust the carseat and how to fold and unfold the pram, and all the 'features'. We took the car seat into the unit and sat Max in it, adjusted the straps, and hooked him up to his oximeter, just to see if he had any trouble breathing while in the seat. No trouble at all - he actually looked rather comfortable. We'll do the same thing later in the week with his pram.

Tuesday's weight - 3960g (up 90g), a good gain. He also had his 'flu vaccine - we await the results (he doesn't react well to vaccines). Mark & I did a mini-CPR lesson, and had to try out the skills on a resus baby. We're OK with the process, but hope (really hope) that we don't have to use our new skills.

6 May

Such a nice couple of days. He's still struggling with the bottle - he swallows a lot of air, so much that it makes him uncomfortable, but then won't burp it up. He's still spilling a little, but not as much as before.

Today he had a 'play date' with another little one - she's a little older and has 'mat time' so Max was invited to join her. Not sure how much he noticed her, but she certainly watched her visitor!

Sunday was weigh day - only up 10g (now 3870g), but as the last weight gain was quite large, it's all OK.

4 May

For the past few days Max has been vomiting (actually it's more a regurgitation or occasionally a 'spill') after every feed. It's getting a bit frustrating, and a little scary as we are always considering his lungs. So last night Marissa (nurse) & I decided to put his Gaviscon into his stomach first, rather than last (after the feed), as all the other nurses have told me to do. And, hey presto, no vomit and he burped a lot more easily (he swallows a lot of air and needs to stop several times during a feed). It was the same today - and then I was told by the doctors that he should have been having the Gaviscon IN the entire feed (as it says on the packet, but I was told earlier to ignore that!!). So at the midday feed I put it in the whole feed, and up to the time I left for lunch - no vomit. Yay Max.

He's taking between half and two-thirds of a 'full' bottle each time it's offered. He had taken a full bottle (two days ago), and I got 75ml (out of 95ml) into him today, so the big question is consistency now.

We had our milk room training today - basically a run through of how to make up formula and sterilise everything. I suppose they must get some strange people through public hospitals and need to go over everything. Pat was great, though, and we discussed the different types of formula (no brand names!) that Max may be sent home on. He'll be tried on another formula from next week to see how he deals with that one - apparently the one he's on now is a very restricted type, and if we want to have it we (and our doctor) have to jump thourgh a few hoops in terms of government paperwork to justify Max's needing it. So, we'll try the other type and hopefully he'll make it easy on all of us.

Next week we work on getting Mark & I ready to take Max home. We have a CPR seminar, and we have to bring in Max's car seat & pram and sit him in it with his O2 monitoring attached to make sure he can breathe properly and isn't restricted in any way. (Hope he's OK, we've paid enough for this equipment!) We'll then be able to take Max for a walk around the hospital, or even take him home for a visit between feeds! We are extremely nervous, but as each day goes by, we're more confident.

We have, however, been told we are highly likely to have issues with him falling ill, especially as he's going home over winter. We've had flu vaccinations, and Max will have one as well, but any virus could hit him quite badly, and we may end up back in hospital, even Level 3. Very scary.

New photos - Max in the 'rocker' that the unit has for older babies (despite his expression he actually like being in it), and Max wearing the NYPD suit his Chocha Hush brought back from New York for him.

2 May

OK, we've now decided Max is a discerning eater. Aparently the taste of Elecare (formula) and breastmilk together is just not right for his palate, so we've gone back to straight Elecare to see if it is indeed the taste he isn't coping with. So far, this seems to be the case. He's certainly not grimacing, arching his back and spitting it all out in the way he has been over the past few days. So far he's taking a regular 20-50mls whenever he's offered a bottle. Fantastic!

Today he had a couple of vomits, but they are relatively minor, and he doesn't desaturate or seem upset once they're over, so we just go on.

Also today was the launch of a new addition to the neo-natal unit - a parent support facility. Basically these are four rooms set out in a motel-style where parents with children in the unit who are critically ill, or who are 'rooming-in' with their child before taking it home, can stay for a night or two. We've had occasion to use these rooms - about 5 times - and so can vouch for them being a true blessing. I was asked to be a 'parent spokesperson' today to chat with the sponsors, the Minister (for Health, who opened the section), and with some media representatives. Max came too - his first trip out of the unit itself (albeit 20 metres down the corridor!). There were many photos taken and several interviews, including print & broadcast media. I hold no hopes that much of what I said will make it to air - I sort of stumbled my way through the questions - I'll be hard to edit to good sound bites! Anyway, I was trying to promote the work of the unit, so if I helped at all, that's great. We'll hopefully be using the rooms for our 'rooming-in' in a short time!