30 April

The past few days have been rather a struggle. Max, after doing wonderful things with feeding, has now regressed and for a whole day simply refused the bottle. He loves to suck, but won't swallow the milk once it's in his mouth. We're so frustrated, but we are told simply to persevere.

There are many and varied techniques being offered to us to try and improve matters, and we are trying them all, but mostly everyone believes it will just be time and practice. It's so demoralising when last week he had taken full bottles on occasion to today only managing to get 20ml down him in 45mins.

He also had some vomits - with a 'normal' baby that wouldn't be an issue, but our worry is the possibility of Max aspirating milk into his lungs. Even a tiny amount could prove problematic for him.

But, on the good side, today Dr Scott said we could take him off his O2 saturations monitor - except for feeding - so he is more portable now! In a week or so we may even be able to take him for walks outside the hospital for a few hours in between feeds. We may end up having to take him home on a naso-gastric tube (apologies for my incorrect spelling in previous posts - I've only just seen this term written down!) as it may take Max several months more to truly learn how to take full suck feeds. So, no home oxygen (as we have assumed all this time), but we will probably have to learn tube care instead. Whatever we need to do!

And some good news - my cousin and his partner have welcomed their son Michael William. He was born early in the morning on 29 April, in Dunedin, New Zealand. Welcome!

26 April

Where do I start when recounting today?

As I arrived at the hospital I got a call on my phone saying Max was very hungry (it was half an hour early for a feed). As I was almost there anyway, I started him feeding when I arrived. He took a whole bottle! (Actually only 80ml out of the 90, but the other 10 were kept aside to be added to medication.) He had also taken the same amount at 1am, but next to nothing at the 5am feed. So, very positive - the greatest amount he's ever suck fed.

Then, I was told that little Ronan, Max's buddy who was born 14 days before Max and so was the oldest boy in the unit, wasn't expected to last the morning. He had been taken off the ventilator and was with him mummy & daddy in a private room. I tried to take it well, but didn't really. I was taken to the coffee shop by the level 2 senior nurse and she fed me hot tea and carrot cake while we discussed the events.

I am so shaken. I really didn't realise Ronan was so sick, and his always-cheerful mum always made me hopeful. I am torn between horror and sadness for him, and them, and fear for Max. We were probably ready to say goodbye to Max a few months ago, when he was extremely sick, but not now. Not now.

When I got back, we were just in time for rounds (all good), then Max had a bath and his wound dressings removed. The wound site looks excellent, and with no stitches, hopefully the scarring will be minimal. His weight is also up, now at 3585g. After his 1pm feed (when he took 50ml by bottle), Max was a little uncomfortable. We sat for a while, and about 20 minutes after finishing his feed he had a big reflux then a bit of a vomit. He hasn't done that in ages, so I hope it's just a 'normal' vomit and not a habit to get into.

As I cleaned Max up, I got the news that Ronan had passed away. I went in to see him & his mum, and just didn't really know how to feel, or what to say. He fought really hard, and for so long. He just looked like he was asleep and safe in his mum's arms, as he always did.

It's very hard now; Max is the big boy of the unit and all hopes are on him. I found out today that one little boy (of a set of twins) died last week and his funeral is tomorrow. I had suspicions one or both of them weren't very good, but I haven't got to know their parents very well. I just feel very down, quite bleak, and need good things to happen soon.

I should say, though, one enormously good thing has happened this week - we received news of the safe arrival of little Melanie to our circle of friends. Her mum & dad (and big sister) live interstate, and we are so pleased to hear a good story!! Congratulations.

25 April

Well, feeds are going to be our big challenge, for sure.

Max was a sleepy boy this morning, and we had to rouse him to try and feed him at 9am. He was extremely sleepy, but took 40ml by bottle (eventually). He then proceeded to wake up and have a lovely morning, lots of big eye contact and I do believe a smile did occur at one point! He seemed hungry, increasingly so right up until 12.30 (feed due at 1pm), when he promptly fell asleep. Timing is everything.

Anyway, he did wake and took the bottle really well for a while, then got very tired again, and once more he got very sleepy. It's a bit of a pattern. He again took 40ml. This time he did a bit of a desat, but picked up pretty quickly. We have had the speech pathologists in twice, and they have given us some tips, but Max just gets so tired, or else he looses the 'seal' on the teat and so he swallows a lot of air, and so gets uncomfortable. then, it takes ages for him to burp. Aw well, we just hope he can get better and better as the days pass.

Yesterday he was weighed and he had lost 100g (back to 3480g), so hopefully with incresed feed (which he's tolerating), he'll start increasing weight again. It's been a bit of a plateau time over the past 2 weeks, and he does need to get a good steady weight gain going again. We'll weigh again tomorrow.

During rounds, Dr Peter seemed pretty relaxed with Max overall, and was discussing stopping a lot of Max's medications over the next week or so. He also had a look at Max's surgery site, and while there is still some swelling and bruising, he is really happy with how it all looks. he also (along with Dr Simon, and Mr Kirby) can't feel a hernia on the left side, and so isn't keen to put Max through surgery for something which isn't a problem. If a hernia does appear later on, well then we'll deal with it then. It seems more and more likely that Max will have no more surgeries before he goes home!!! Can't quite believe that.

A grandmother (whose grandson is in the unit and we know quite well) asked me how many surgeries Max has had, and I had to actually count them (it's five) - I couldn't recall a figure off the top of my head. Poor bugger.

24 April

Quite an emotional and rocky day today.


We spent the morning with Max, giving him his 10am bottle at 9am as he was so hungry (he took 40ml), and so we asked for his daily volume to be increased. Now he is on 90ml 4-hourly. Apparently he actually took an entire 75ml bottle at 6am, so we were very impressed. I also put Max's 'neggie shoes' on him - booties I knitted when he was still inside (an - egg, a - negg, neggie - get it?). Very cute, and they only just fit.


Then, we went to the funeral of the beautiful Amelia - another little one who came through the unit (and whose parents & grandparents we know). She wasn't prem, but had some serious birth complications, but despite all odds managed to live for 12 days, five of them at home with her mummy and daddy. The funeral was, of course, extremely emotional and confronting. I have already attended an infant funeral this year, but it was Mark's first. The size of the coffin was just so immediate and telling, and we were both so conflicted in our feelings it was very hard to express, even to each other, what we were feeling. However, the eulogy was lovely, there was an enchanting photo of Amelia next to her coffin, and her grandfather spoke, which really was so amazing. An extraordinary couple, and family.


When we returned to the unit (we held Max just that bit closer), we were giving him his next feed when another baby, who we know quite well, had a very bad turn. He is now back in Level 3, and while we assure staff we're OK, we are both very shaken. We are very worried something like that may happen to Max. However, we are assured that Max's lungs aren't as bad as his little buddy's, and Max is tracking well. We're still very shaken. My hands actually were shaking at the time - thank goodness Mark was holding Max.


In the evening we attended a session for parents of premature babies on what to expect, including going home. It was good, but I wish we'd gone to an earlier session (they are held every month), as there was a lot on what to do with your premmie while in the unit - and we're kind of past that point. But, there was some bits on developmental milestones we should be working towards, and a couple brought their little one in to show 'they do grow up'! Little Matthew stole the show - 15 months old, six week prem, and doing fine. He babbled and showed off his new crawling skills. All were enchanted.


We then gave Max his 9pm feed (40ml), and went home, very subdued. A horribly confronting and emotional day. My eyes hurt, my nose is red, and my head is pounding.

23 April

Another nice day. We had some great 'awake time' in the morning - currently our aim is to get him to make more eye contact, and to smile. Max is 6 weeks past term now, and most term babies are consciously smiling by now. We need to ensure he's tracking these milestones as much as possible.
He was quite hungry for his 10am feed and took 60ml on the bottle - I was very pleased. The 2pm feed he had to be woken for, but still took 45ml. Mark did the 6pm feed, and Max took 50ml. His saturations stay quite stable now, with the O2 percentages almost always over 90%, even when feeding, asleep or full. His pulse is often around the 90-95 mark when he's fast asleep, but this is normal for a post-term baby. Generally he sits between 120-150bpm.

We had a surprise present left on Max (pic) - an All Blacks romper suit! Pretty huge (probably for a 12+mth old), but I had no idea who left it. After a few questions, it turns out it was from Dr Simon - also a kiwi. So cool! We are seriously instructed by all to bring Max back to the unit wearing it! We will.

22 April

5 Months!

Yes, he's five months old today. And, such a good day! We actually took him for a walk! The unit has a small pushchair, so we unplugged him from all machines, and walked down the corridor to the family room. Yes, our little family was actually together in the 'family' room!

We gave him a bottle there, which he started well on, but then got very tired and 'milk drunk'. We gavaged the rest of the feed then pushed him back to his spot. He seemed very tired, and his saturations were a little low, but it was a lovely moment.

In the late afternoon he was taken back to Level 2, back to our old bay, but now we're with the other two boys who have been here a long time. Max was also put onto 4-hourly feeds (75ml each), and we had a bath and a weigh (now = 3580g - finally over 3.5kg!). Very nice day.

21 April

What a difference a day makes! We arrived in the morning to a sleepy boy, quite settled. He remained so for another two hours, with bits of waking, but no real crying. Certainly nothing like yesterday. He woke fully just before 11am, just in time for a feed (and visitors!). He tried hard on the bottle, but only managed 35ml. (Apparently last night he took 50ml!) We were actually rather happy with that.

He's still on panadol every six hours, and his bottom is getting rather red again, probably from the very loose stools. He really doesn't like having his nappy changed - I think that particular area is quite sore still.

He is still off oxygen completely. His saturations ranged from the mid eighties to high nineties, so that's all rather acceptable.

He had a cranial ultrasound a week or so ago, which I had assumed was all clear (as nothing had been said about it). However, one of the measurements taken during this check had increased, so we had a rather colourful (and metaphorical) description/explanation from Dr Simon today. Basically, there's nothing extra to worry about. Max will almost certainly have some neurological damage, due to the extreme prematurity, and this is just another indicator - 'more of the same'. So, nothing actually extra. We're not fussed. We have no idea what Max will challenge us with next, so we need to take these "don't worry" moments and enjoy them. We certainly don't forget the underlying issues, but we try not to dwell on them. there's nothing we can do right now, as we don't know exactly what Max might be able/not be able to do, so right now he's just Max.

He had some lovely awake time, big cuddles and playing, then, immediately after rounds, promptly fell asleep. Good boy.

He's actually supposed to be back in Level 2, but there's been another baby explosion and it is totally full - to overflowing. Along with Max, there's one or two other Level 3-ers who should be moved, but there's nowhere to put them! We actually don't mind - it's quieter where we are, and we have our old window seat back!

Some people have asked us about his name. For all those non-Ukis, here's why we chose his names: Maxym was Mark's grandfather's name, is Ukranian, and is pronounced approximately 'muck-sem'. David is my father's middle name, also my brother's middle name, and I believe it's a great-grandfather's somewhere along the line, too. So, something from both sides of the family. To us, though, he's just Max!

20 April

DAY 150!

Yes, we have been doing our trek back & forth for one hundred and fifty days. Ye gods.

Actually, it wasn't a very pleasant morning today. Max was asleep when I arrived, but had been unsettled overnight, only going to sleep at about 3am. Not long after I arrived he woke up, and proceeded to be extremely grumbly all morning. There were periods of screaming & crying, some simply grumbly times, and only a couple of quieter moments. I have no idea what is wrong - it was all most unlike Max. We tried all the normal soothing methods, but to no avail.

His feeds have now been put back to the 70ml every 3 hours that he was on prior to the surgery. Goodness knows how they are going to get him to take that much, but maybe he simply is very hungry. He also has very runny stools, so possibly they are hurting him, or some other kind of tummy/gut discomfort. The panadol doesn't seem to be helping - or else he's be far worse without it!

I really felt horrible today. He just wasn't my 'pre-surgery Max', and the only things that would soothe him was me holding him, and a dummy - but neither seemed to be foolproof. I only hope this is just a 'grumpy day' and there's nothing really wrong.

19 April

Overnight Max wasn't tolerating his feeds, but the last aspirate before rounds was very good. So, Dr Simon decided to simply go for it and see how Max goes - he upped his feeds to 30ml 2-hourly, and Max is to try the bottle again. he's certainly sucking at the dummy ravenously.

The big change was that he is on NO oxygen support at all!!! I was stunned, but then realised that just prior to extubation he'd been given a dose of dex - a steroid - to help give his lungs a boost when coming off the ventilator. So, while he's doing great right now, the effects of the steroids may wear off after a day or two. Ah well, he looks great right now.

He is still tender around the wound site, and around his 'bits', so he's on panadol for a bit of pain relief. He's not really stooling very well - his gut must still be quite empty. The stools are quite revolting - dark green/black - so mostly just bile. Hopefully that'll improve with the increased feeding.

18 April

By the time we got in this morning (after a dramatic run to the vet with Bruji, who fell off a tall chest of drawers and scratched his leg quite deeply - he's fine!), Max was extubated and back on intra-nasal oxygen. He was on 3 litres per minute when we arrived, and when we left he was down to between 1 and 1.5 lpm. He looked great, much more like his old self. He was obviously very hungry, so he was put onto 10ml per hour gavage feeds from early afternoon.

Later on we learnt he wasn't really tolerating the food, with large aspirates, so they dropped it to 5mlph profused rather than gavaged.

He was weighed after he was extubated, and he's put on 210g over the last 2 days! Obviously, as he's been paralysed, this is all fluid, so he was given a dose of lasix (dieuretics) to try and clear it.

17 April

This morning Max was given his last dose of paralysing agent just before 8am. By 11.30 he was really waking up, and we were hopeful he would be extubated. During that time we also had a visit from Max's surgeon, who seemed pleased with the way the wound was looking. He explained that there would be some swelling over the next couple of days, so not to panic and think the hernia has returned. During the operation he had anticipated the swelling, so he's made an incision in the scrotum (sorry to any guys who may be reading) and left it open in order to allow excess fluids to drain. By this morning, however, it seems to have closed itself up. He also said he wasn't too worried about the right side, and that he'd schedule Max for the next operation (will they ever end...) in about 3 weeks.

The decision to extubate, however, is the domain of the neonatologist, not the surgeon, and when rounds arrived at Max (lucky last), Dr Simon decided to give Max another day in his 'mini-coma' (is there such a thing? or is it like 'mini-tornado' - a made-up phrase by someone who doesn't really understand how these things work?!). So Max was given more of his paralysing agent, more morphine, and put back to sleep.

Though we understand why this is the case, it's quite demoralising. We were going so well, this is such a setback. We stayed with him all of the morning, then went back in the late afternoon/early evening again. There was discussion about feeding him, but of course he can't really be given food while he's in this paralysis state. Maybe tomorrow.

16 April

Max's hernia surgery was this morning. It didn't really go entirely to plan.

He had both his left and right hernias presenting, but the left was always much bigger than the right (and it presented first). So, the surgeon (who did both Max's bowel surgeries, so knows him well) started with that side. It was a huge job, one he rated as one of the two or three most difficult hernias he's ever done. A large amount of intestine, and part of the bladder, had descended, and had to be pushed back up into the abdominal cavity. There were adhesions also present, probably resulting from his previous surgeries, or possibly from his NEC infection. It was all rather fiddly and took quite a long time. There was not a lot of muscle available, either, for him to use to stitch the opening closed. However, he eventually closed it as best he could.

After getting that bit done, which he was reasonably confident had gone as well as it could have gone, he decided to stop the surgery and not attempt the right side at this time.

So, the danger now is from Max pushing down and forcing the bowel back through the muscle opening and its sutures. He is a bigger boy, and this is a real possibility, so to make every attempt to stop him from doing this before the muscle has had a chance to repair, he is still ventilated, and even sedated and paralysed. Obviously he's off all oral feeds until further notice, and he's on antibiotics and morphine.

And, he's back in Level 3 (Intensive Care).

We're a bit demoralised by this. It's all a bit reminiscent of the past and we really had hoped this one would be the last surgery for our little one. But, obviously he'll have at least one more (to repair the right side). If the worst happens, and the hernia redescends, then there's more surgery, probably much more serious in content.

It's also quite horrible to see our little livewire laid out on the surgical cot again, not moving. He doesn't really look much like Max right now. One good thing is, though, we can really see how much bigger he is. He actually fills the bed up so much more than the last time he was in one! We'll call the unit every few hours tonight, to see how he's going. And, just when I'd changed the number in my phone from Level 3 to the Level 2 number...

14 & 15 April

A good weekend. Max is really working on the bottles; on Sudnay he tried the bottles 5 times, each taking between 20-25ml before having to stop. He did have a decent vomit today, but recovered extremely quickly.
His feeds are up to 70ml every three hours, and his weight is not really changing much. Over the last few days he's gone up 10g, then down 5g, and so on. Today he weighs 3385g.
Tomorrow is his inguinal hernia surgery. All keep reassuring us it is a reasonably routine operation, and the hope is that he will be both intubated (to the ventilator) and extubated in theatre, so he can return to Level 2. That will be the last of our surgeries, so we're apprehensive, but really looking forward to it all being over.

13 April

Really lovely day today - had a bath, repeating the 'wrap in a sheet first' format, and he was great throughout. Tried a couple of bottles and managed to get about 15ml down each time, only being halted by coughing. I'm still a bit confused about which teat he prefers, or which is best for him. The speech pathologists were good, but didn't really state whether we should use one teat over another. We'll just have to keep plodding along.

11 April

Another big day. Max had another eye exam in the morning, which went quite well, but zonked him out for the morning. Basically his eyes are doing as well as can be expected. He will probably have lost some of his peripheral vision (he won't be a pilot!), but the main areas are, so far, doing well after surgery. Another check in two weeks.

He had another weigh - he lost a bit yesterday, but with the changes to his diet regime (upped his food but added dieuretics), they wanted to see how he was going. He is now 3455g - actually up 15g since yesterday. Still not quite the 3.5kg mark yet.

We had a bath - this time I wrapped him in a soft cloth then put him in the water - and he loved the whole thing - far more than normal. Next time I'll do the same thing, but have a deeper bath and see if he likes the sensation of floating.

After an exciting nappy change (where the cot sheets had to be changed because I wasn't quick enough...), he was wide awake and ready for a bottle. We took it extremely slowly, and tried a couple of different teats. This time, I think we hit a winner (at least at the moment), and he took 30ml over 30 minutes. I stopped then as he seemed to be getting tired. We'll still talk to a speech pathologist as I am still very worried about how to get him wanting a bottle more often. With 3-hourly feeds I'm not sure he's getting time to get hungry - but if we let him get hungry, we run the risk of him not gettting enough food for him to grow, and groth is the only thing that will help his lungs to function better.

In the afternoon he had his first hearing test (pic). All extremely interesting - it's about testing his neurological responses to sound and involves sensors on his head and a probe in the ear making a rapid clicking sound (quite low in volume). We had been warned that he probably wouldn't 'pass' this first test (which he didn't), mainly because of a surfeit of 'artifact' noise - Max wriggling, snuffling and sucking. He's also still on oxygen, so the (now quite soft) sound of the flow is also picked up. This makes it hard for the equipment to get a clear indication of his brain's response to the sound. Basically, we don't know whether he has any hearing loss. They'll try the test again in 3-4 weeks, and we'll probably return as an outpatient, when we've taken him home, for further examinations.

He was a bit tired after all the excitement of actually leaving his cot for the first time (he had been put on portable oxygen and taken to a quiet(ish) room for testing), and he did desaturate a bit when back in his big bed, especially after some of his medication. We put his O2 up a bit, just until he had recovered.

He had a visit from Chocha Sofie and Uncle Shane, and Chocha helped with his 6pm bottle (which actually went down reasonably well - about 20ml). It's nice to have visitors!

10 April

The last couple of days have been much the same. He is still coughing occasionally, and once in a while it's a very bad cough, which almost turns into a vomit - he turns a horrible purple and all we can do is wait it out. Nothing actually comes up, but of course the danger is that bits of milk or saliva may end up going back down into his lungs. Apparently his lungs are sounding a bit 'crackly' at the moment, which may mean there's a bit of excess fluid in there. So, he's back on dieuretics (two different kinds) to try and counter this.

His nose drops and special cream to clear up the ulcerations on his bottom have both been stopped now. We also were able to remove his respiration monitors (the three sticky sensors which have always been attached to his chest) as he is not showing any problems with apnoea or bradycardias now. Huge, huge step. He now only has one graph on his monitor - showing his oxygen saturations.

He feeds are up to 65ml every 3 hours, and he is still having issues with the suck-swallow-breathe. He often coughs, and while this is not always a bad cough, we can't really risk it making issues with his lungs, so we often stop. He only really has 2-4 goes on a bottle each day, and at most he gets 30ml down, more usually 5-25ml. The rest of his feed gets gavaged through his nasal tube. We may have to seek help from a speech pathologist with his feeding, as we really don't want to have to take him home still relying on gavaging.

8 April

Easter Sunday - again the unit made the day special for the 'inmates'. The babies were dressed in Easter clothes and all cots were reset with Easter linen. Each child was given a bag of gifts, including a couple of eggs and a pair of bunny booties. There were also cards made from the children to their parents, including a footprint. Such a good setup.

Weight is up 30g, to 3430g. He had a bath, which he hated, but we had some lovely awake time together today. He was a bit reflux-y, sometimes quite horribly so, and coughing stopped both our attempts at bottle feeding. His digestion seems to be working much better now he's on Elecare.

7 April

When I arrived this morning Max was sound asleep, and remained so for another hour. Apparently overnight he was quite unsettled, so they upped his oxgyen flow to .250 lpm, and from about midnight he was much better. He was also changed from Monogyn (formula) to Elecare last night, in an attempt to try and deal with the strange bowel/digestion issues. This seemed to result in a bit of diarrohea, but by the time I changed a nappy this morning, it was a good colour & consistency, and no sign of blood at all. So, maybe yesterday's issues were a digestion thing after all, and his gut still is immature and trying to deal with the food it's being given.

Once Max woke up, he was hungry (took 15ml on bottle before a little cough stopped proceedings), and then slept for a while in my arms. After rounds, he was very active and wriggly, but not upset at all. It was quite fun, except when he seemed to be about to vomit - but perhaps it was just a big reflux, as nothing came up! He was quite lovely at times, sucking on his thumb or fist throughout most of the play time.

He was quite clammy again today (and overnight), with a bit of a sweaty forehead, but his temperature was low (but normal). Not sure what this means - Dr Vanessa thinks that maybe it's a continuation of his illness of last week, or possibly a reaction to his immunisation of earlier this week. He will be monitored!

It's very different for us right now. All our friends (patients) from level 3 are in level 2 now, and there are many new staff (new to us) we don't really know. There are some extremely sick babies in Level 3, including a friend of the family, which is keeping us very much on the edge. It's all just too close for comfort, and we feel so much for the parents and their families. They face such a different siutuation to ours, but with the same essential fears. Their little one's odds are somewhat worse than Max's (which were only 29% chance of survival at birth, let alone with all his other dramas) so all we can do is offer our support and our prayers.

6 April

Max spent his first night in level two reasonably settled. Today was very nice, with some great cuddles and an attempt at the bottle (and a bit of a vomit on Tato!). However, later on, when changing his nappy, we were a bit concerned with what we thought was blood in his stool. After a bit of testing, this was confirmed.

He was looked at by Dr Simon, who took a sample (in the most professionally named piece of equipment the 'poo pot') which will be tested to see if Max has an infection. Hopefully, though, it is still symptomatic of his immature gut. Max's nappy changes haven't been consistent from one day to the next, so it's hard to tell what is 'normal' for him. We simply have to take advice when it's given and try to stay positive. Our biggest fear is that something has happened to the bowel - another infection like last time (probably unlikely, but still a fear), or something else.

Again, we wait.

5 April

Max is in Level 2!!
Yes, he's one step closer to the exit door. Level 3 had a few more admissions today, and as Max has been on the verge of being moved for about a week now, he was the first to go.

Basically Level 2 is "Special Care" as opposed to "Intensive Care". It's quite different, but mostly for us as parents as we don't have the close care of one nurse but rather a more team care situation. It's also a lot busier and noisier!

He's doing reasonably well, no real changes. He had a bath, which wasn't a screaming fit so I count it as a success, he is taking bottles a couple of times a day, although the moment he coughs we stop (which happens relatively frequently) to avoid any vestiges of milk going into his lungs, and he is accumulating minor medications day by day.

Today he was put onto nasal drops to try and clear a bit of the excess secretions (and reduce the number of times he has to be suctioned). This is added to the small pharmacy which surrounds his bed, plus the list of stock medications he is given thoroughout the day. Goodness knows how many we'll have to take home with us...

4 April

Yesterday Max was very grumpy in the morning, but he'd had some good sleeps overnight. We tried the bottle again and he managed 40ml. I was then warned that if Max coughs at any stage during feeding then we have to stop the bottle immediately and gavage the rest - again, this is to try and avoid food being regurgitated into the lungs.

He had the last of his 3 initial immunisations yesterday, so we'll cross our fingers and hope there's no adverse reactions to this one.

We had a lot of visitors yesterday - the physiotherapist, the counsellor, the chaplain, and best of all, Baba and Digo came to visit from Melbourne. Max was quite grumpy, but this wasn't all his fault - his oximeter wasn't picking up properly, and several different options were tried out. All the fussing and poking and prodding made him a bit annoyed.

Today he was lovely and asleep when I went in - and he'd had a really settled night. I was a bit worried this was more of the 'post-immunisation lethargy' we saw last week, but when he woke up he was quite perky. We tried a bottle at 10am, and he sucked really well - and then promptly fell asleep. Only managed 25ml, but it was probably a good idea to gavage the rest as he did get a bit reflux-y a bit later on.

Lately we've been pushing a bit for his hernia surgery. However, the events of the past week have proven that Max isn't a well boy, despite all the great things that are happening. His breathing is particularly bad - well, more specifically his lungs' ability to properly process the air he's breathing. He has had CO2 levels of 90+ over the last week (when it should be in the 40s or thereabouts), showing that he still has a way to go to get to a truly stable level. Re-ventilating him and anaesthetising him for a procedure which isn't urgent is not the best way to go at the moment. We've been reminded that it's the 'tortoise which wins the race', and so it'll be another 4-5 weeks before they're done, unless there's a reason to do them earlier.

2 April

Max was much more his usual self yesterday and today, a lot more active. This also means he's much more grizzly at times. He slept pretty much overnight on Saturday night, and most of last night (though a bit unsettled at times). We tried a bath again today, which he hated. I can't work out what he likes & doesn't like about baths - sometimes he loves it and sometimes he screams throughout.

He's lost a bit of weight over the past few days (now down to 3225g), which I hope is due to the viral infection, the diarrohea, the diuretics and the 24 hours he was off oral feeds. Hopefully he'll start picking up a bit from now. He doesn't seem to have put on any length since the last measure (today = 45cm), but I have read that babies tend to grow long, then bulk out, then long again - in bursts.

Today he had some more nasal secretions sent for testing - if they come back negative, we are going to assume his coughing is a form of reflux, and put him on some Gaviscon. It's quite important Max doesn't get too much into the coughing/regurgitation style of behaviour, as any little bits of milk that go down the trachea accidentally could end up in the lungs - and Max's lungs aren't good at the best of times.

He tried the bottle twice today - first time he managed 30ml, and the second time he took the whole 55ml feed. Yay Max.