12 November

Yes, it has been a long break between posts, but really there has been nothing enormous to write about. In some ways, this is, in itself, very good.

Max is not sleeping through the night anymore, hasn't done in weeks. It is getting hotter here, so this may be a part of it, but I'm not sure why. Daylight Saving is in, as well, and that doesn't help. I am not a fan.

He had a check-up with his paediatrician, who seems quite happy about everything. We hadn't kept his immunisations on schedule (I'm a bad parent), but in truth I thought the injections would be given at our hospital visits. Technically, immunisations are the one part of a premmie development which is aligned with their actual age (rather than their corrected age). However, Max's are all over the place. The first ones ('newborn') weren't given at all as he was so small & sick, the next ones weren't given until March - when he was about two weeks corrected but four months actual. The next ('three months') were about June, when he was 3 months corrected, but 6 1/2 actual. So, I had no real idea when the next ('six months') ones were due, and supposed I'd be told! Anyway, we went to our GP and had the six-months ones done. But, because he is twelve months actual later this month, she wanted to know when to do the 12month immunsations!!! 12 months actual age (which would only be about 3 weeks after the six month ones), or 12 months corrected age (which is in March). In the end I checked with Max's paediatrician who said 'two months from the last immunisations' - so that'll be January. Split the difference, I suppose.

He is eating really rather well. He has three meals a day and about four bottles. He is still very bad on the bottle, but in general it doesn't seem to worry him. We have had one scare where he got extremely constipated after a day of not much liquid, so I will have to be very vigilant about offering bottles and water. I am trying to find a sip cup which has a straw rather than a sipper but also has good handles for a baby to hold. Max tends to simply chew the spout of his sip cup, rather than suck, so he doesn't actually get much water down - so all his liquid is from the milk feeds.

We are pretty paranoid about his diet, and really hope people don't think we're anal retentive (well, more than normal), but we don't want him eating sweets, chocolate, fruit juice etc. Premmies have a tendency toward childhood obesity (unless they are one of those who struggles to grow - we can never win), so the whole lolly thing isn't just us being 'wholefood hippy parents', it's about his growth, bowel health, mental health (ADD is another potential future issue, as is autism), and dental health .

Over the weekend, I got to catch up with a friend from interstate, as well as a couple of other people at a family gathering, and there were lots of lovely comments about how well Max looks, and how healthy he is. I don't mean to be negative, he is doing really well and we're very proud of him and enjoying him every day, but appearances can be deceiving. What we always have in the back of our mind are the possibilities for the future. Max could be a perfectly normal little boy. He could! But, here are just a few of the things that are very real possibilities for a premmie like Max...

- bowel issues (hopefully nothing too bad, but he does tend toward constipation already)
- growth issues (he's around the 5th %ile for height and weight)
- dental issues (premmies tend to have bad teeth as part of the arrested development thing. This means he may have brittle teeth, possibly fillings even in his baby teeth, let alone the adult ones.)
- speech issues (many premmies have various speech and language issues)
- hearing issues (so far he's OK on this one)
- vision (we know he's short-sighted. It isn't too bad, so we hope it isn't degenerative!)
- motor skills - this could be hypo or hypertonia (low / high muscle tone) or could even be Cerebral Palsy. Lots of premmies have CP and it really isn't about what they do, but rather what they don't do. It usually isn't diagnosed properly until the child is about 2-3 years
- ADD / Autism / Aspergers - these scare the hell out of me, but are often linked to prematurity or birth/in utero problems. It has been mentioned to us, especially the ADD thing. Yet another reason why we are careful with his diet - the various additives and preservatives in lots of processed food can exacerbate ADD sufferers' symptoms. Even if he doesn't have ADD, cutting these things out of his diet isn't a bad thing!

Someone aked 'what about parties and friends' houses?'. Well - I suppose we'll deal with that when it happens. One day out of his life every now and then isn't a real issue. He's still a kid and parties are fun - I just want to make sure he also had good food, and that he knows the difference between 'sometimes food' and 'everyday food'.

There are two teeth coming through now! It's been happening for about ten days now, spotted by a friend at Mothers' Group (thanks, Xanthe!). So, possibly his birthday photos will have a toothy grin! It's very exciting, but it will be sad to have no more gummy bear...

He is rolling from front to back and to front again quite happily now. Still not sitting, but is quite happy to be held in a sitting or standing position. Terrible balance, though.

He loves the cat! Up until a couple of weeks ago, the cats were ignored, even if they walked past him or sat next to him. Now they are a source of much fascination and hilarity. I'll try & put a video on here sometime of Max & Brujon! (Schubie just hides.)

So, the big thing on the horizon is the first birthday celebrations. I am so hoping that it will go well. So far not many of our invitees have got back to us, so it may be a small group, but we'll just be so proud of him. Yay Max!

17 October

Such a big week. Max made his first plane flights this week as he visited Melbourne for the first time. Overall he acquitted himself very well, but I am less than impressed with the Virgin Blue seats. They also seated those with babies in the back row - I would have thought a little leg room up the front would have been better for us - but maybe there's more to it than that. I'm not small by any means, but it really was ridiculous. On the return trip I had the aisle seat, and Max's head was half in the aisle and I had to be really aware of people moving up & down the aisle, and his feet were on his cousin's tray table. And when the man in front reclined his seat, I felt like I was in a straightjacket. Truly horrible. Luckily, it was only 50 mins!

We went to a close friend's daughter's christening, and Max met lots of people who had heard about him but who hadn't seen him before. Among them was the very cute (and so bright) Lachlan, who was absolutely adorable - he took Max's hand when he first met Max (very gently), and kissed it, saying "Baby Max!". Max grinned at him, which encouraged Lachlan to give Max a proper kiss on the cheek. Just lovely to watch.

He has been good lately, but is becoming more aware of different foods. He doesn't actively refuse much, but some foods really don't get met with much approval. As he still doesn't take much from bottles, I need to keep the solids journey up. Mince and chicken are fine, but he's not sure about cheese or baked beans. He's not good with a sip cup - just plays with it.

He's still not sitting, so we bought a seat called a 'Bumbo' (see pic) which helps him to sit up. Hopefully he'll get to like the idea, ratehr than lying down, and will learn to balance himself.

He's a huge giggler all of a sudden! Over the last week, I have been able to get him giggling most days - just blissful. I know most babies laugh at a much younger age, but as he's always been a happy kid, we haven't worried too much about the no laughing. But, now that it's here, it is so much fun.




We have bought some baby sunglasses to help Max learn what it is like to wear them - in preparation for the 'real thing' next year. So far, so good. He can't wear then in the car or pram as he's still resting on the back of his head and so they move, but he's quite good when he's just sitting or being held (see pic).

3 October

Max had his eye test update today. Just to reiterate his eye history - he was diagnosed with ROP (Retinopathy of Prematurity) This is a condition which is quite common in prem babies, and was a major cause of blindness in premmies into the 30s and 40s. The last 16 weeks of gestation are when the blood vessels in the eyes develop, and if baby is born earlier than 37 weeks, the development of these blood vessels stop. Premmies usually require extra oxygen in order to survive, but unfortuniately one side-effeect is that the extra and prolonged use of oxygen can damage the development of these little blood vessels attached to the retine. (This is why the study Max is on, called the BOOST study, is so important. It aims to even further narrow the parameters by which oxygen is administered - hopefully not only helping babies to breathe, but maybe reducing the other side effects like ROP as well.

Have a look at this really good summary of ROP to find out more: http://www.lowvision.org/retinopathy_of_prematurityxx.htm Max had Stage 3 ROP, in both eyes, which was operated on with laser surgery. (You can tick off the 'risk factors' for Max if you like - he had seven out of the 13 listed factors!)

About a month or so after he came home, we noticed he was going cross-eyed quite often, and in particular his right eye seemed to be a bit 'lazy'. So, we asked about it, and the hospital brought his eye checkup forward a month. We went in today and he was a very good little boy - sat still, looked ahead at the lights, didn't cry when he had his drops (which dilate the pupils, making it easier for the ophthalmologist to see into the structure of the eye), and he charmed everyone. Once the first doctor had had a look, she called for Dr John (who actually checks out the babies in the Unit) to have a look as well. He finished up, then looked at me, and said - "he's short-sighted. Come back in six months, we'll reassess then, but it will have to be treated." My stomach plummeted as I envisioned more surgery. I asked what sort of 'treatment', and he said "glasses".
Well! We can cope with glasses!!

Actually, the more I thought about it, the sadder I got. Poor wee mite. Those beautiful eyes. I know it could be much worse, and still could be, (His eyes could still degenerate) but glasses really are OK. We're going to buy some baby sunglasses (we were going to anyway) and hopefully get him used to the idea of something on his face (again) before the real ones arrive.

2 October

Weighed him today - 6.97kg! I don't think last week's weight was correct. If it was, he's put on nearly 300g in a week - highly unlikely. However, if I look back a bit further, it actually equals 630g (his birth weight!) in 6 weeks - which is good.

So, he's on track - yay Max...

1 October

What have we been up to...

Max is now very comfortable grabbing his feet (a feat I wasn't sure he's actually get to do!), and he can roll quite well from his tummy to his back, but he isn't rolling from back to front yet. I suppose it's a matter of motivation - he's not that keen to be on his front, so why go there?! He's not sitting - and while I suppose I'm a little worried in some ways, I know he's still within the bounds of 'normal' (corrected), so mostly I just sit and wait.

He is still terrible at drinking - we've even gone back to giving him 100-calorie formula, as some days he doesn't even get 400ml down. However, he's getting more and more down each meal (and we are having three meals a day) in terms of solids. He has about 1/2 cup of food each meal and it seems to all stay down quite happily. We have begun some dairy products (and will go slowly on those over the next couple of weeks), and he's also had his first couple of meals containing meat (plain mincemeat and veges). This week will bring pasta, some new veges, and my first attempt at cooking chicken stock from scratch. My beef stock was a hit, so cross fingers the next will be as well.

We weighed him last Tuesday (25th), properly (nude) and he weighed 6.7kg exactly. So, not much weight on after all. So, we'll go back in tomorrow, and hopefully see a bit of an increase. I'm hoping for about 100g per week now, but he's only put on about 300g in the last 5 weeks. He's still in the 'normal' range, but as he's on the very bottom of it, we do have to be a bit aware of his weight gain. It's odd to think that babies as small as 6kg and up to 9.5kg are all 'normal' for 6.5 months.

Max watched (some of) his first Grand Final over the weekend and we have had definite signs that he has chosen his own club.

(Before I continue with this, I must preface it with the warning that I am not a huge footy fan, and while Mark has a team he follows, we aren't passionate, and in fact I often get a little saddened by people who are so over the top in following a team (of any code) that they get parochial, violent, or even simply insulting to others who follow another team. It's only sport, and there's always next year, folks. Enjoy your sport, but respect other people and - lighten up!)

Anyway - Max.

Here's the reasons we think Max (even before they won) has chosen Geelong for his team...

• When the teams came onto the field, and their club songs played, Max danced, kicked and grinned at Geelong's, but when Port's began his bottom lip trembled and a grumpy/sad face began (until comforted by Tato).


• His Grandma sent him, (totally coincidentally as she's in NZ) over a week earlier, a navy and white striped top and shorts set, which he loves to wear.


• When watching the game, he spoke his first 'word'... listen carefully... "aaabbbuuuubbbuaaabbullluulAblett......" (accompanied by a big smile and forceful arm movement (could be the opening bounce...))


• Max wouldn't sleep until the game was over and Geelong had won.

So, it is confirmed (until further evidence is received otherwise).

Photos - He's been 'practising' sleeping in his travel cot - a groovy new one we got on Ebay from the UK - can't get it in Australia. I love it because it's easy to set up & break down, and is really small when packed - fits into a pillow case. It only weighs about 3kg, so, unlike many of the so-called 'portable cots' you can buy here, it actually can be used for travelling! He seems to like it, and it actually feels really cosy.

Reading a letter from Grandma...

then eating a letter from Grandma.

16 September

We had a lovely day a couple of days ago - we went to the Royal Adelaide Show with Max - walked around the pavilions and watched some of the wood chopping events. Max was introduced to livestock - a cow and a chicken (see pic). Not really sure what he thought of it all!

He's been a lovely soul this week - very happy and smiley. He seems to have (mostly) got over his runny nose of the other week (but I haven't), and he's sleeping well. He has two sleeps a day and a good overnight. He seems to alternate sleeping through the night for two nights with one night with one waking episode. He's now in his own room, and while one of us slept in with him for the first three nights, we now are in our own room and use the baby monitor to keep tabs on him.

He's still not rolling - but he is so close. I'm trying to give him incentive to roll, but he's not that interested. I suppose he'll do it when he's ready. He grabs his toes now - most amusing, but not when trying to change a nappy. He also has just started to kick when in the bath. Absolutely hilarious.

Weight - I weighed him two days ago (fully clothed & with nappy) and he was 6.78kg - so probably nearly 6.7 actual. He's still putting on weight quite well.

Food - we've had success with corn, banana, yoghurt (sort of - might be a bit tart on its own, but OK when mixed with fruit), rhubarb and broccoli. He even had a bit of mild guacamole the other day. Apricot, however, seems quite strong for him - so I think it'll only be eaten when mixed with other, milder, fruit.

We approached the Flinders Medical Centre Foundation with our fundraising idea for the Neo-Natal Unit - selling baby clothes through Ebay. They seem very keen, so we're pretty much on track to go. Now all we need are some donations! We'll get some postcards printed and distribute them to appropriate locales, and I'll email everyone I know. We hopefully will spend the next couple of months collecting clothes and getting them ready before putting the first auctions up. Cross fingers.....

6 September

Food today - potato - NO, but peas YES!!!
Whose is this child? Not mine, on the evidence...

(Pic - "No Max, no more peas. Mama's afraid of bright green vomit...")

5 September

We have begun to settle into a new routine, now that Max is on three meals a day. We are trying to also anticipate when he is tired, in order to make the daytime sleeping a bit easier. Mostly, it is working. He's having five feeds a day, and since we reduced the calorie level of the formula, he's actually drinking more. He's eating pretty much anything we throw at him (peas this morning), up to 6 tablespoons of food each meal. We only tried avocado the once as he screwed up his face enormously! We will try it again at some point. The fruit this week has been Pawpaw, which I tried as it was listed in one of my baby food books. Max seems to eat it fine, but I must say it smells and tastes revolting to me.

Father's Day was fun - Max & I visited Tato at work to give him his present - see photo!

We've been going to the movies most weeks, to the 'Babes In Arms' sessions (full of babies, prams and parents walking up & down aisles!). Actually very good fun, and it makes us get out as a family more - even if it is only for a few hours.

The last day or so has seen Max have a bit of a snuffly nose - other than a bit of noise at night it doesn't seem to worry him, but we are our usual paranoid selves. He's currently wrapped up very warmly! Hopefully it's only a touch of a cold and will pass.

His last physio appointment went rather well. He was in a foul mood - I think he was too hot - but he did all that was asked of him, and did the things he normally does at home. He's almost rolling, but this isn't consistent at all. His 'tummy time' is much better, and his upper body is getting stronger. Wendy (physio) gave me a couple of ways to help encourage him to hold his head up when he's sitting. He can't sit on his own, but loves to sit or 'stand' on our laps when we hold him.

He has had a bit of a 'lazy eye' recently, where he goes cross-eyed occasionally. I have been told it's a developmental thing and mostly this kind of symptom passes as the child grows, but the opthamologist has asked to see him earlier than scheduled - November instead of December. Hopefully by then it will have resolved itself. If not, he may need a patch on the 'good' eye to encourage the 'bad' eye to work and to ensure the messages to the vison centre of the brain are being received equally from both eyes. He may be long-sighted, so glasses may be the solution. Whatever.

It's the last 'formal' week of our Mothers' Group this week. I am hoping that the members will be keen to continue meeting together. They really are a good group - I'm lucky. They are almost all girls, (only one other boy), but the mums all seem to be around my age - no one very much older or younger.We are planning the big move - Max into his own room. We were going to do it this week, but now that he's a little sick (well, with a bit of a runny nose), I'm not putting him anywhere. Maybe next week.

(Other photos 1-at a friend's 21st - the theme was "Gangsters & Flappers" / 2- my current favourite photo!)

25 August

We continue on...

Max is working hard on his solids. I try a new one every three days or so, just to make sure there's no adverse reactions. So far we've tried carrot, kumara, pumpkin, potato, zucchini, apple, peach, prune juice and rice cereal. Yesterday we tried broccoli - and I think we've found our first 'no' food. he screwed up his face when he got his first spoonful, and later he choked and gagged, requiring a bang on the back to get it out. Hmmm. Well, we'll try again today, a teaspoon only, and see if we get the same reaction.

With the change in diet, we've had a corresponding change in the 'output'. A little worrying as it has become much thicker and 'formed', and Max has started the odd 'grunt' - which is normally very funny & cute in normal babies, but with his bowel history it scares the hell out of us. Hence, the prune juice. I add 5-10ml to his breakfast cereal/fruit, and it does seem to be making a difference.

This week's food will be broccoli (if we can), avocado (if the ones I bought today for 79c each are actually any good) and banana. I have been warned that banana can contribute to constipation, so we may do a 'go slow' on that one, or add prune juice to the mush. We'll also try the odd 'vege mix', to make sure that he doesn't lose the tase for the veges he's already tried. I've found that if I add formula to the veges, and warm it all up a little, it's a kind of vege soup. He tends to slurp it off the spoon rather than open his mouth up, but we're getting there.

He still loves holding the spoon, but for my own sanity (and to reduce washing), now I hold both his hands (one under my arm) and only give him the spoon to play with at the end of the meal. Otherwise, he flicks the spoon out of his mouth, and food goes on him, on me, on the walls, on the cat....

He is still a bit weak in his upper body, but his legs are going great guns. He loves to stand up, and is holding himself for longer & longer (well, up to a minute) without buckling at the knees. He's trying to roll, but his upper body is letting him down. If he could push up a bit more with his arms, he'd be fine. In fact, there have been one or two good rolls from front to back, but only with great encouragement. I simply hope he'll catch up. We have a physio appointment on Monday, so we'll see then.

He seems to have a 'lazy' eye - and occasionally will go cross-eyed. I hoped this was just a growth thing, but just to be sure we're going to see the eye doctor in early October (rather than December) to have him checked out.

He is now over ten times his birth weight (at 6.4kg) and over double his birth length (at 63.5cm). The weight is consistent and doing well, around the 5th percentile, but his length has leapt from below the 1st percentile to up around the 8-10th! He's still a shortie.

13 August

Yes, another interesting week.

Despite me saying that he should start solids when he is six months corrected, this week he was advised to start! (He was 5 months corrected yesterday). So, on Wednesday, he had some rice cereal, which went down very well - eventually. He does OK when you spoon food in, but much better if he's allowed to hold and suck on the spoon. The spoon needs to be upside-down, though, so he can get at the food.

Thursday he took 2t of rice cereal, and we tried carrot on Friday - loved it. We could probably have kept on spooning it into him - but we weren't too keen to overload his bowel so early! Saturday he took carrot again - double the amount he had the day before (4 teaspoons over two 'meals'). Yesterday he had one 'meal' of 2 teaspoons of carrot, and another of 4 teaspoons of rice cereal. He actually is anticipating the spoon a little (occasionally). The plan is to try a new food every three days, but keep going with the other ones as well. We have kumara, pumpkin and zucchini all cooked & ready to go (easier to cook it all at once, then freeze it. If he doesn't like it - well, no great loss). He's still continuing with his bottles - always between 450 and 550ml per day - sometimes slightly less, sometimes slightly more.

He is getting better at 'tummy time' - is lifting his head a reasonable amount, and is also starting to try and lift his legs as well. It could be the beginning of a crawl motion - we'll see.

He visited his bowel surgeon - who is great - and he is fine not to see Max again until he's 18 and can buy the doc a beer at the Adelaide Oval on the first day of a test.

6 August

Just a weight update - he's now 6.090kg, up 350g in 14 days. He's tracking quite well along the 10th percentile line, so despite the small amounts of food he's taking (or so it seems to us), he's growing!

5 August

This week has seen a few interesting changes. Firstly, Max has decided that he likes to be held in a standing position rather than in a sitting one. For a month or two now, if you hold his hands/forearms (with him gripping your thumbs), he has braced himself and tried to pull himself into a sit. Lots of fun, and he's getting better at holding his head up (though he'll still allow it to drop down sometimes). From Wednesday, however, he not only pulled himself up, but pushed down with his feet and straightened his legs - resulting in a standing up baby! Quite frightening at first, as he was gripping my hands so tightly that I found it hard to let go and hold him! He still doesn't have a good amount of strength in his upper torso, so while his little legs are working hard to straighten and hold him up, his shoulders & body are flopping! Ah well, it's all good physio.

He also is trying to blow 'raspberries' - but basically he ends up with pursed lips and a bit of air and spit blowing out. Very funny to watch.

We also had our first 'Parent's Group' session - actually a very nice group, almost all girls (only Max and one other boy), and a variety of 'stories' to tell. Although some had bad birth stories (but, thank goodness, one in particular was extremely positive - good on you), I was still jealous. Quite hard for me, listening to some of it, but I think the group will be a good one. I hope so, anyway. It would be nice to make some different friends - ones with 'normal' babies and from different backgrounds - to add to the fabulous premmie parents we already know.

I have had people ask about how we'll keep up the blog. basically I'll try and make an entry every week or fortnight, unless there's something to say. It is quite hard to actually get to sit down at the computer for more than a couple of minutes at a time - Max doesn't like being ignored, and still hates daytime sleeping!

29 July

Since I last posted, Max had his first physio appointment and I went back to uni. The first went really well, the latter was much harder than I thought it would be.

The physio check is basically to see how he is progressing in his physical development - is he on track etc... Wendy went through various observational excercises with him - putting him on the floor on his back, holding toys in front of him (to see if he follows them with his eyes, reaches out for them etc). This he did quite well, and reached out for the toy. He then was rolled onto his tummy - which he normally doesn't like at all, and (thank goodness) he pushed himself up a bit on his arms (which is about the most he does at home). I have read on other premmie websites of babies who go to their medical check and then don't do all the things they do at home, so they are marked as lower in their development than they should be! Max, luckily, actually did all the things he does at home - no more, no less.


Then, we tried sitting up. Max loves pulling himself (while holding my hands) up into a sitting position. He tends to still drop his chin to his chest, but does look up a good deal of the time as well. After a couple of other positions, he was pronounced 'reasonably average' and we went home.


Overall, I was happy. He doesn't really look like he's interested in rolling yet, nor is he very good on his tummy, but over the past three weeks he is slowly improving. He's still quite loose in the torso, which makes sitting up a bit tricky for him as he slumps a bit - especially if he's tired. We simply hope he'll catch up, as every little negative is still a bit scary. However, in general, we're happy with what he can do.


Feeding still isn't brilliant, but the last few days he's started the odd 120ml bottle - maybe one or two a day. He even took one that was 160ml the other day - we were stunned. However, the feat hasn't been repeated; we live in hope.


He is going through a bit of a 'I hate daytime sleeping' phase and won't go to bed during the day. He whinges and grizzles right through to screams when we try to put him down for naps. This can be frustrating, but the worst bit is that he is so obviously tired! He gets very very bad at about 4pm, especially if he woke up at 6am! He won't lie down, wriggles in your arms, all the normal grumpy tired baby stuff. Last night was spectacular - got so upset he vomited, and Mark literally had to stand up and do laps of the house for about an hour before he fell asleep.


Poor little guy - he then slept (from 5.30pm) until 1am, had a whole bottle, then slept again until 7am. Hopefully today we'll try a nap about 10.30 and see how it goes.


He now weighs about 5.7kg and is solidly a size 000 in clothes. I am noticing how widely kids' clothes differ in sizes - the Bonds Wondersuits are far smaller (in fact he's in oo in those) than others - some of the ooo clothes we've been given are huge! He's also getting a bit more hair - mostly on top only and it is a red-brown colour.


I have decided/We have decided that I won't be going back to uni this semester. I did do a one-week Art Intensive topic, which was a lot of fun but a lot of intense work (obviously). I still haven't finished the last assignment, and have found it just so difficult to sit at the computer and write - Max isn't keen on being left for long, and hates silence! Mark does what he can, but he's at work a lot, so we realised I'd really struggle to do another topic or two properly while he's at this stage. If we could put him into childcare it might be different, but we can't do that right now.


So, maybe next year.

(Photos: top to bottom - Just a lovely shot I wanted to share, Mr Grumpyface, falling asleep sitting leaning against me in bed, bathtime)

5 July

Ok! OK! I get the hint!


I have had at least four people in the last two days ask when I'm going to update the blog - so here goes.

Max has been inundated with visitors lately, most especially Grandma from New Zealand for a week and then Baba & Dido from Melbourne for a few days. He has been very well behaved, and has become much easier to get a smile out of. However, it's not always consistent, and we haven't really had laughs (although the other night we got a few 'heh!' sounds accompanied by grins).


He sleeps well - but I may have misled people in my last post with my 'sleeping through the night' comment. He will often go for 5 hours without waking us up, but I still wake every hour or two - to either check he's still breathing (!) or to see if he's hungry. I'm still quite paranoid about the whole food situation. He's not a great eater - only taking 450 - 550ml of fortified food each day. I suppose there's no problem with that if he continues to grow appropriately and isn't dehydrated, but as we get him weighed weekly, and he's on (actually below) the lowest percentile for his corrected age, I'm always afraid he isn't growing well. But, he seems healthy enough, and is quite a placid wee soul, so I suppose all is well.

I bumped into a friend in a shop today, who had her son (term) while Max was in hospital, and I asked her what her son's weight was. She laughed and said 'I have no idea' - she just looks to see if he's growing. I suppose that's the difference between a term baby and a prem. We're always looking at every movement and statistic to check how he is developing, to anticipate any problems and to ensure we head off any issues as soon as possible.

We had a medical checkup earlier this week - Max now weighs 5320g and is relatively on track for a 3-4 month-old baby (which is his 'corrected age'). We need to keep encouraging smiling/laughing, his torso is a bit low in tone (- a bit 'loose', he doesn't hold it strongly when you pick him up), and he's a bit behind in lifting his head when sitting up and when he's on his tummy. We also have a physio appointment next week, and I'm sure we'll come out of that with a list of issues! We know he favours lying his head to his right (thus his head is quite flat on that side and his face is a bit out of alignment), and we are constantly turning his head, putting the 'interesting things' on his left etc etc. Very difficult. We were also warned that there are some very nasty viruses around at the moment, and to try to keep Max away from potential sources of infection - mostly crowded places and places with children. Oops.


He has a lot to say when he's in the mood - babbling to us or to his toys. He has also started a whingy type of cry - he's never been much of a screamer (but he can when he wants to) - which usually means he's bored, but can be the only sign we have that he is ready for food. He's a hard guy to read!

The photos - (red stripy outfit) Max became absolutely fascinated with his hands not long after he came home. he's now at the point of putting them in his mouth all the time, and can almost get the while fist in! His Tato calls that outfit his 'Where's Wally' gear - but I love it! (close up) - taken in an attempt to capture him smiling - he tends to go 'blank' whenever he spots any kind of camera. (yellow outfit lying down) - finally we get a pic of a smile - when he is lying on the change table looking at his favourite toy. One day I'll take a photo of the toy and explain why we call it 'Warney'. (surrounded by toys) - this is his gym, which he'll play under for hours. I actually took the centre item off the gym after this photo - it has a mirror on it, and Max kept going cross-eyed as he tried to focus!

21 June

Another week of Max - and yet another where he cannot be predictable!

We have been given an 'even more fortified' recipe for his formula to use since they took his tube out. The aim is to get a certain minimum of this mix into him each day in order to get the appropriate amounts of liquid (to keep him hydrayted) and of calories to get him growing. It's all a bit strange right now, as he is suddenly not demanding food as he was a week or so ago (when the amounts he was being given were larger!).

I don't want to be a parent who complains about their baby sleeping through the night, but he simply hasn't been waking for food during the night - which wouldn't be a worry IF he took regular and larger bottles during the day. However, he struggles to take 100ml at a time, and even that is a cause for celebration. So, we're a bit worried that he isn't taking enough. However, he's still perky and talkative, (a bit grizzly at times), no temperature, breathing well, and nappies are appropriate(!). We just have to work on weight gain.

Speaking of which, his last weight was exactly 5kg!! His head circumference is also progressing well, and though his length isn't very long (he's a shortie), it's progressing as well. We'll have to see how his weight goes this week - his second without the tube - and hope he's put on 150g or thereabouts.

15 June

Two days ago Max went back into hospital (as planned) to have his next set of immunisations. It all went well, and he was praised by all and sundry! He now weighs 4945g (!) and...has no tubes! We're on a trial run of an even more fortified (calorie-enriched) version of formula. This means he doesn't need to have as much volume as he would if he were on standard formula. Hopefully we can keep him taking a good amount orally so that the tube doesn't need to go back in. We'll give it a few days, and if he doesn't keep up the minimum amount, we'll have to go back and get the tube put back in. (Pic - finally, after 204 days, Max has NO TUBES at all!)

He was extremely lethargic when he came home, and slept all day. He woke occasionally (at which times he was fed), but I was quite concerned and so I went back to the unit at about 9.30 last night to get him checked out. Of course, as soon as we got back, Max woke up beautifully and was all perky! Ah well, I'd rather be safe.

Today he's really back to his old self. I suspect he didn't get much sleep when he was in the unit, so he was simply tired. We went for a walk around the shopping centre, and he was beautifully behaved. We'll go back for another weigh on Tuesday (I hope he hasn't put on too much - I want it to be real weight), then nothing except our outreach nurse's visits each week again.

We have a series of visitors over the next few weeks, so Max will have his social skills tested. He is smiling a bit more, but it isn't all the time, and we can't always provoke him into smiling. It's the same with 'talking' - he will sometimes lie on his mat and babble for ages, and then we won't hear anything for a day or so.

8 June

I know it has been ages since I last posted. We have been working out our new family routines and Max has been working out who we are and how we work. Mark & I are a bit sleep-deprived, but nothing unexpected. Max is growing, albeit not as quickly as we'd like. His last weight was 4530g - up only 60g from the previous week. The doctors don't seem worried, though, and apparently around the three-month mark babies have a bit of a growth spurt - so he's probably putting all the food to good use.

He is now off Losec - after I queried how to administer it (as I was having huge troubles), it transpired that two other mums were having similar problems. So, Dr Scott suggested we try a few days without it, and see if his vomiting/reflux gets worse. Well, suffice to say he went for a week with no vomits at all, and has only had one smallish one since stopping Losec. He still coughs, but not a huge amount of reflux problems. We''re keeping his mattress raised at one end to help him sleep (which really seems to work).

He has slowly been increasing the amount he can take by bottle at each feed - and actually has achieved three full bottles. However, we keep increasing the amount in each bottle, so it's harder & harder for him! Actually, we've just changed from the normal formula mix to a 'higher calorie' recipe. This means he has less volume in each bottle (ie 110ml rather than 135ml), but the formula is fortified, so he gets the equivalent in calories. Hopefully we'll get to taking full bottles soon, then work on increasing the volume again.

He goes back into hospital next week for his next immunisations. I'm assuming they might do a few checkups at the same time - weight, bloods, etc. Maybe we'll look at taking the tube out - but I am not holding my breath on that one.

A couple of days ago Max & I went for lunch at another 'premmie mum's' place, where there were five of us in total, and our babies. It was very tiring, especially for Max, but I am so very glad I went (and was asked!). Great to see how the children were growing, and good to catch up with those I knew. I hope to do this again very soon.

Pretty much all the babies I knew in the unit have now gone home. We are thrilled to hear of their progress, and hope to host a play afternoon soon!

Photos - Max & Tato playing piano; Max LOVES getting dressed in the morning!

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!

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!