26 January

Day 66 – Max’s first Australia Day and he’s still on CPAP!
Most of today he spend hovering around the 30-35% mark, occasionally up to 40% when being handled.
At 8pm he was up to 4ml per hour feeds, which is to be increased 1ml every 6 hours. So very proud of him – he’s doing so well. I do feel very nervous visiting him though. Very scared that something will go wrong while I’m there. But, he’s working well and I am proud of him. It’s like he’s turned a corner and there may be a light shining on him. Do I dare to hope he might make it? There is still such a long way to go yet.

25 January

Day 65 – Big Day. Max is now on CPAP!
They extubated him at 3pm – let’s see how long he can go. So far, he’s doing really well. God answers prayer!
He was up to 6ml per hour feeds, but they have been held until he’s a bit more stable. Oxygen levels are between 40-60%.
Received handmade bear and lovely card from Margaret, my friend in NZ who was my witness at our wedding. So lovely.

24 January

Day 64. Up and down today. I had a lovely cuddle for a hour and a half this morning. He was a bit wriggly, but good. His weight is back up – now 1395g.
Had lots of replies through Austprem to my enquiry about “How long did your child take to get off the ventilator?”. There were some very interesting comparisons.
Went back in the afternoon and Max was very unsettled. Finally they got him reasonably calm, after some suction, turning him, a nappy change, the dummy, and a dose of chloral.
He had a visit from a friend of ours – Wendy. She was fantastic (and has been throughout this journey). Stayed quite a while and was wonderful throughout. She left us a lovely gift, and a fantastic casserole & cake!
Max was also visited by his Chocha Sofie and cousin Samantha, as they try to do on a Wednesday (but last Wednesday was a horrible one, so it’s been a couple of weeks since they’ve seen him).

23 January

Day 63. Another stable day. Feeds up to 5ml per hour, ventilation down to 17 (pressure) and 35 compulsory breaths per minute.
Good boy Max. We love you so much and very much want you healthy and strong to come home.
I joined Austprem – an online forum for parents with babies or children born prematurely.

22 January

Day 62 Good day. Max was reasonably stable, and feeds went up to 4ml per hour (still the elemental 88% fortified formula). He was a bit unsettled overnight for occasionally he’s on chloral again.
The heart scan shows no ‘vegetation’, and the rash seems to have gone.
2 months old today!!!

21 January

Day 61. Mark went in this morning after his night shift and was offered a cuddle – and he accepted. So we went back at 1pm and he held Max for the first time, and for over an hour. Mark was very nervous, but he looked really good after a while. Max was very good throughout. He only splinted two or three times and he fell asleep for blocks of time. So lovely. Loads of photos!
I’m still feeling “Fragile” and don’t really have that intense curiosity I have had – for every minute problem, progress or treatment. Probably a good thing.
Feeds – 2ml per hour, rose to 3ml per hour later in the day. Yay!

20 January

Day 60!!! Max is reasonably good in his ventilation, though he still splints a lot. Oxygen is at 28-40%, suction is being done every 90-120 minutes, but the product is less thick than before.
BUT – there is a new rash on his torso front and back and on his legs. It could be something related to the central line again, or it could be a heart infection. So, more antibiotics, more time on the ventilator. The other infection seems to be (was) in his lungs – according to one of the culture results.

He’s really behind in getting this breathing right. Should be on CPAP by now. He’s still underweight, and it took such a lot to get him to this stage.

What now? I‘m drained. I have faith, and have always said “Thy will be done”, but I did hope that the guidance I’ve been receiving was showing Max to be one who will live. Is this a bump in the road? Will he just be a late CPAP-er? Will he gain weight slowly but steadily? Is this it?

Back to my favourite quote, the one I live by (as well as “Thy will be done”):
“This, too, shall pass.”

19 January

Max did OK overnight - they altered some of the ventilation parameters (PEEP to 20) and he remained at an oxygen requirement of 30-40%. His stoma output all day was pretty watery and a dark yellow/green – not much solid at all. (He’s still on 2ml formula per hour.) He remained pretty much the same all day, and his PEEP was again reduced, to 18.
I held him, for the first time since Christmas Day, for just over an hour. He was in 40-50% oxygen, but pretty stable throughout. It was hard going getting him back into the incubator – Tim (nurse) said it shows Max is struggling to get a basic breathing incentive happening. I‘m worried that he never will. By 36 weeks (corrected) it should have developed – but what if it doesn’t?
The CLD (Chronic Lung Disease) is a result of long-term ventilation as well as his prematurity. He’s producing loads of secretions from the lungs and percussive-type work on his chest and back is helping to break up the gunk. He’s being suctioned hourly, plus he’s on diuretics to assist in clearing the excess fluid away.

18 January

Day 58. Mark went to work directly from the hospital, so both of us were up at 4.30am. I went in to see Max – he’s looking good, nice colour and reasonable stats. He’d had a good blood gas and the new x-ray shows a little less cloudiness. He opened his eyes for me! Keep fighting Max. Thank the Lord for answered prayer.

Afternoon – went to Lewis’s funeral this morning. Such a lovely service, taken by the chaplain from the Women’s and Children’s Hospital. Amanda gave the eulogy herself – a lovely and heartrending tribute. There were lots of staff from FMC, including Margaret (chaplain) and Dr Simon. Many people were concerned for me, so I tried to leave as soon afterwards as I could – it’s not about me.

I tried hard to think about Jodie, Amanda and Lewis, but couldn’t help occasionally thinking about Max. Curiously, though, I went away feeling that if we have to, we could do that event for Max.

Got back to FMC and found Max doing well – 50% of the time he’s in 92-97% saturations and a further 18% of the time he’s in 88-92% - so most encouraging.

I have begun ‘quiet times’ again. Probably a bit irregular, but they are really special times, and are certainly giving me plenty of hope, and plenty to think about.

17 January

I couldn’t sleep, once I woke at 4.45am. So, as Mark prepared to go to work, I called the unit. Brenda (nurse) told me that Max’d had some more antibiotics and seemed a bit ‘perkier’. She also said Dr Simon wasn’t keen to take the central line out just yet, and as the antibiotics (ventomycyn (spelling?)) were given through the central line, that should have killed off any bacteria in that area.

Max certainly looked better when I got there – a better colour. His ventilation has been put up from a minimum 25 breaths per minute (which he had been breathing above quite well) to a minimum 45 breaths, and he’s not taking many breaths on his own. He’s also in higher oxygen. However, he’s moving a bit more so he’s less lethargic than yesterday.

He had his first eye test today – so far all looks OK, but as he’s so immature it’s certainly not conclusive.

More blood tests and tests on urine and stools. I got a chance to lean very close to him and kiss him a bit. So nice. He smells so new – a bit “hospital-y”, but gorgeous. I could whisper to him.
They’re trying 2ml per hour of the very “processed” or “elemental” formula, hopefully getting the stomach working again. Dr Vanessa thinks the infection isn’t the reason for the bowel/stomach problem as many babies have sudden digestive problems. It could be a gastro-type bug, or a reaction to the long-term use of PN, or just Max. The test/culture results may help.

He’ll need more blood as a “top up”, so I’ll go in again this afternoon to donate again.
I got extremely scared, and even Mark was silent this morning. I couldn’t face the fact that an infection might take him – not the huge things like breathing or digestion. Julie saw I wasn’t looking good, hugged me and said “he’s not going anywhere” – which is exactly what I needed to hear.

I think out problem now is that we know too much, and not enough. We are making our own pseudo-diagnoses, and, without the full picture and experience, we’re unable to relax and accept the daily summaries we’re being given like we used to.

I hope this is just a bump in the road and not a brick wall.


Later –
I went back in to give blood. Max is still plodding and is in higher oxygen than usual (40-60%) and lots of ups and downs. Mark arrived, and we watched him for a while. Then, as we were intending to leave, Max took a big plummet – his tidal volumes dropped to 1-2 and then had a braddy. Huge reactions from staff, and for the next hour or so he was worked on by several doctors and nurses. They worked on his ventilation, manually, and gave numerous suctions. There were huge secretions, and then another braddy.

He had another x-ray eventually done, which shows lots of cloudy lungs – infection. Hopefully the antibiotics do something. A new IV line was put in at about 9.30pm, as the one from last night spat the dummy as they tried to put the blood transfusion through. His oral feeds have been held again.

He’s so extremely frail. We’re both staying at the hospital tonight, hoping he settles well and responds to antibiotics and fluids. We are VERY shaken. The next 24-48 hours, we’re told, will make or break him.

16 January

Such a down day. No huge problems, but for some reason he’s not brilliant on his breathing and now his stoma excretions are all water. So, they’re trying yet another version of formula.

We went back in the afternoon, 45min after the new feeds were started. Max extremely quiet. Some little curds in his bag, but also some water. I was worried about his abdomen, as it looked a little swollen – however they checked and assured me his stomach was ‘soft’ and it seemed OK. Not convinced, we went home rather down.

Later – we got a call and it seems he has some kind of infection, probably from his central line being in so long. So, various cultures sent off and blood tests etc and probably more antibiotics. God, I hope they work. He looked unwell to us. We feel very drained.

15 January

Day 55. Max doing OK, but not brilliant. He was good overnight and yesterday, so they’ve changed some ventilation parameters – now he’s on SIPPV (I think I’ve got that right). This means whenever he takes a breath, the ventilator fills him up to a set level. He is occasionally taking a series of breaths, then stops for a while – which is when the ventilator kicks in.
We went back in the afternoon – he’s still reasonably good. He had a very good blood gas, so they’ve again changed the ventilation parameters to try and trigger the brain to take more breaths spontaneously. Apparently if the CO2 levels are low, the brain doesn’t think it needs to breathe, but if the levels are higher, it may be stimulated to take a breath and so oxygenate the blood.

His stoma output was very watery today – we were assured that this was OK, but they had a liver ultrasound to check there wasn’t a problem in that area. OK results. So, feed additives are again altered to try and help. Prems do change day to day with excretions, so we’re told. He’s now on 7ml by mouth (lactose-free formula plus fortification and additives) and only about 1ml per hour of PN through his central line.

His hair is growing nicely, though there is still a bit of a bald patch where they had shaved to try and put IVs in. There are some little curls at the back. His feet look really big as well – well in relation to the rest of him! They also took the final dressing off his chest wound – it’s healing very nicely.

Weight now 1220 – up 70g over 2 days. Yay Max!

14 January

Day 54 - reasonably stable day. His stoma bag leaked, so I helped change it and his nappy (don’t know how much help I was). There was some real (well, meconium) poo in his nappy – apparently a good sign. Stoma excretion a really good paste, but apparently too light a colour. So the formula is being changed slightly to allow him to break the fats down more easily.

12 January

Well, there will be no hernia operation today – Dr Kirby came in and decided Max is too small, and as there are potential complications which could occur (particularly in relation to his testicles) in such a small baby, he’s decided to wait. Kirby will do both the left and the right sides at the same time when he does the surgery, even though only the left is a problem right now. He thinks the stoma is looking good, and is thinking of holding off on re-sectioning the bowel until Max is term age. The hernias will probably not be able to be done at the same time, and may even be done after the bowel surgery, as the open bowel is an infection risk.

So, they tried to put Max on CPAP (extubate) today instead. He tried really hard, and did better in many ways than last time, but still not good. His breathing was mostly quite shallow and occasional apnoeas made it more difficult to keep him saturating properly. Then, he began having bradycardias (when the heart rate drops below 100 bpm), which is new for him. Sometimes, he was having them both at the same time (apparently apnoeas can trigger braddys). Once he’d done 2-3 of these in under half an hour, Julie (nurse practitioner) said it was time to re-intubate. I agreed.

Max tried so hard. In the end he didn’t last as long this time as last – from 2pm to 5pm(ish) only. So, back on the ventilator, and we re-assess. Max needed blood today – and I gave it! No problems at all this time (last time I tried, the doctor really struggled to find an appropriate vein), and Julie was brilliant.

From a good to a bad to an OK.

However, today was a hugely horrible day for everyone in the unit. A lovely little boy who was born 20 days before Max (at 31 weeks) had his care removed after a very long battle. It was absolutely horrible, sad, and very scary. It was devastating for his parents, Amanda and Jodie, and their parents. Lewis looked so good, it was very strange. Simply (as I don’t know the whole story, of course), his lungs weren’t good enough, nor were never going to get good enough for him to survive.

Of course I’m horrified and devastated for Jodie and Amanda, but I can’t help being extremely scared for Max, and Mark & I. What if Max goes down the same path? What if he, like little Lewis, has everything working – except his lungs? And what if they can’t get better? The CPAP failure only goes to fuel this fear.

The staff were very professional, but I could see they were shaken as well – with Lewis, with Ronan’s hernia surgery(another very small guy), with Max’s CPAP attempt, and with several other babies needing various procedures done. Such a long, long, horrible day all around.

13 January 2007

My mother has been visiting from New Zealand, and this was her last day. We went in to see Max in the morning – he was pretty good. He’s still fighting the ventilator each time he wiggles, but basically sitting in 21-28%. They’ve had some trouble with getting him feeding, but they’re pushing on. He’s on a lactose-free formula, moving from 3ml to 6ml profusion per hour. We are pretty sure that his biggest problem with getting off the ventilator isn’t really his lung condition, but rather his brain development. As Dr Simon describes it – the ‘computer hasn’t kicked in yet’. At this age (31+6 weeks corrected) he’s simply not supposed to be breathing. The brain needs to develop and grow in order to tell the lungs to breathe.
Kim (nurse) told us that is can be hard to get babies on CPAP to gain weight, as a huge amount of energy is used in breathing. So, in some ways, a few more weeks on the ventilator, simply growing, is quite a good idea.
We discovered Max lost some weight a few days ago. Not good and a bit scary. He must gain. However, it could have been the diuretics and just a good fluid loss. Can’t tell.

11 January 2007

He was all set for extubation today – really doing nicely. Bit wriggly, but in 21-28% oxygen. I got to change another nappy!

BUT – it was discovered he now has a hernia – left side groin. So, more surgery, probably tomorrow, and no extubation. One or two other babies in the unit are also having hernia surgery tomorrow, so Max will join that queue.

My poor darling. He looked so lovely today. Occasionally opening his eyes a little bit, and some little grins. He also loves the dummy and sucked on it for ages.

He’s not working the EBM perfectly – his stoma output is a bit watery – so they’re taking him off it and trying a lactose-free formula instead (once he’s allowed back on food after the surgery).

10 January

Max was going to be extubated today, but Dr Simon has decided to finish the course of steroids first. So 2 more doses left – 12pm today and midnight, then extubation sometime tomorrow.
He was lovely this morning. Big, open eyes. Even a little smile. I do so love my wee boy, and so hop he’ll make it. Such a precious little bundle. So tiny.

He’s up to 6ml fortified EBM per hour. I have ordered a new breast pump to help keep it all going.

Saw the counsellor, Deb. A very low-key meeting. She said I looked better – certainly I feel better than the last time we talked.

9 January

Max has actually had about five reasonably good days. He still desats every time he wriggles, but his swings are way less. He has had loads of visitors over Ukrainian Christmas – a very popular boy. Really, we’re just waiting to see when they’ll try extubation again.
His heart surgery scar is enormous, but looks very clean and tidy. His stoma is working well – lots of curdy stuff. He’s worked his way up to 5ml EBM profused per hour. My milk expressing is going OK – back on 2-3 domperidone per day, plus all the home remedies I can muster – cashews, fenugreek tea, stout shandy…

4 January

Mark & I spoke with Dr Scott today – a “big picture” chat. No real revelations. The big problems are the chronic lung disease and his breathing (lungs, circulation, ventilator etc), and then, further away, his bowel. The main solution to all this is time and growth. Other issues – well, anything could happen.

3 January

Horrible morning for me. He’d had a reasonably good night, but while I was there he had some big desats and a bad blood gas. No real reason – so they worked with hand respirators and suction to bring him back up.
I was really shaken. The counsellor, Deb, was there with me. I can’t remember all I said with her, but I was a bit of a wreck. Basically I want someone to say ‘It’s OK, he’s not going to die’ and then I could cope with what’s going on. I know they can’t say that, though – but I still wish they could.
I’m a bit sick of this game now. I want to have him big and well – I want him home.

2 January

Weight – he’s over 1 kg!

1 January 2007

Overnight, Max was very unstable and fought the ventilator hard, so much so that they had to heavily sedate him – basically paralyse him – to allow the ventilator to work. So, Dr Scott decided it was time to try extubation. This was a huge step, and I was so afraid of it not working. It’s only 3 days since major surgery.

However, he went really well on the resuscitation mask, and eventually settled (vaguely) onto CPAP. I went home. After about 5-6 hours, though, he was tiring, and his blood gases weren’t good, so back on the ventilator he went. It was a good try, but Scott thinks the steroids they gave him before extubation (to give his lungs an extra boost of healing) probably hadn’t truly kicked in, and so weren’t at their peak benefit.

Now the debate will begin anew as to when to try again.

Picture of Max with his big wound from his heart operation. (taken 1 January)

31 December 2006

Went in at 8.30am – just in time for rounds. It seems that the cardiologist was right, the blood pressure has come right and the kidneys have kicked in!
No major changes today, except for restarting EBM – 1ml per hour from 4pm. Good boy Max!

30 December

Still blood pressure issues. Some urine output, but not much. Huge debate about possible causes – everything from a problem in surgery to a congenital defect. Various drugs tried and stopped and retried.
The cardiologist from WCH came back over at about 3pm and did a cardiac echo, to give a ‘real time’ check. Basically, he said that the clip on the duct is pinching or pressing on the aorta, possibly impeding the blood flow slightly. He also said it shouldn’t be a problem and it should right itself (the flow and the blood pressure issues). If further surgery is required, they’ll wait until he is much bigger.
Big relief for us, but I do want to hear from the paediatrician.

29 December

Max’s heart surgery was this morning. It started late, and went longer than I expected it to. We had been told it was a 20-30 minute procedure, so I was worried when it took longer, but it turns out a normal length for this operation is 45minutes (actually in surgery), so it actually was a good timing.
The surgeon said the duct was very large, so the decision to ligate was the right one – drugs simply wouldn’t have closed it. However, the aorta seemed very small. Later, this seemed to be causing some issues with his blood pressure – the upper limbs were OK, but the lower limbs weren’t giving good readings. Also, his kidneys didn’t seem to kick back in much. This also could have been due to the blood pressure issues. Dr Simon (doing evening rounds) prescribed dopamine (sp?) to try and increase the blood pressure. He gave me another “he might not make it” talk. I simply can’t wait until that kind of talk stops. It’s like living on a knife edge.
I slept the night in the hospital. I’d intended to visit Max during the night, but slept like a log from 11pm – 5am.

28 December

After a bit of discussion between Scott and Peter, they have decided to hold the extubation attempt and surgically ligate the duct. In a way, we’re relieved, in another way it is heart surgery, and very scary.
Some nice things – his digestion is still good, and more ‘curds’ are appearing in his bag. His urine output is good. I got to give him a bed wash and change his nappy – my first time! He was very good throughout these procedures (saturating 92-96%) and cleaned up a treat. His blood gases and his urinalysis are both good, and the cranial ultrasound is due again today.
Surgery scheduled for tomorrow.

27 December

Debate this morning over the heart duct again. It may have reopened – which would mean surgery. A cardiac echo was ordered for later today to see exactly what’s going on. Peter was also a bit iffy about the ventilation – whether to put him back on high-frequency, whether to extubate, maybe this, maybe that.
His EBM now fortified 77.5 and up to 3.5ml profused over an hour. Now seeing the mental health nurse/counsellor Deb weekly. Good to talk to, actually.
Jenny S (nurse – one of the many ‘Jennies’) showed us some diagrammatic ‘flash cards’ to explain exactly what the duct is (PDA) and how it is a problem. Asked her to keep them nearby and I’ll show my Mum when she visits. Everyone is still adamant that Max is “a fighter” and “a strong little boy” – very nice to hear.
Later…
The PDA is still open. They’ve decided to try the drugs again. Max is digesting food more competently now – there are some little solidy bits coming into his stoma bag.

26 December

Came in at 9am. There was no ‘shaky shaky’ (as Dr Simon calls it) ventilation! He went onto conventional ventilation at about 1am. He’s having to work much harder, and is having big sweeps up and down in terms of his oxygenation, but is still able to sit in air now and again. He’s still on chloral – and wiggles a lot, which affects the oxygenation/respiration. Had a blood transfusion overnight, and is looking much pinker. My expressing is not going well. The 9am expression resulted in only 7-8ml of milk. I have insisted I need to go back onto domperidone – and all have agreed. Dr Peter is on today and made some little changes. He couldn’t hear a heart duct – and has ordered a cardiac echo for tomorrow to check it properly. Another cranial scan is due on Thursday. Then, after a bit of a talk with the other consultants, he thinks they may try taking the ventilation tubes out on Friday or Saturday and try him on CPAP. We’re a bit nervous about that, but it has to be tried.
He’s back on diuretics, to try and lose a bit to the excess fluid. The EBM he’s taking has now been fortified with extra calories to try and get the true weight up.
Today was Linda’s (nurse) last day. She has been there for Max and for us through some of the absolute worst days. I made a bit of a fool of myself when I realised she wouldn’t be back, crying my eyes out. We will miss her terribly.

25 December - Christmas Day

Mark was working 5am – 3pm today, and the plan was that I would join him for lunch at the Bureau, with other families. So he left at about 4.30am, I left at about 7am to go to the unit. They had said that today was a ‘cuddle day’ and he was due for a weigh. It soon became obvious that I wasn’t going to get to the Bureau. Max needed his tubes retaping, and then Father Christmas arrived so I had to take photos!
Max gave us a card with a picture of him all dressed up in Christmas clothing and with a stamped footprint. (The nurses overnight had had a lot of fun!) There was also a stocking full of baby care stock, a soft toy, and special Christmas linen in his incubator. They did make it very festive!
Following the retaping, we had rounds, and then a cuddle and a weigh. Weight now 915g (+235g in 2 weeks). However, he’s still retaining a great deal of fluid, so he’s probably only about 780-800g in real weight.
After cuddles he took a bit of time to settle, but not ages. He was put into a clean cot, with fresh ventilator tubes and linen. It was now about 2pm, and I hadn’t eaten since 6.30am, so I ran out and grabbed a muffin from the service station, getting back in time to be there when Mark arrived.
We left at about 4pm and went to Sofie’s (Mark’s sister), where we admired the girls’ Christmas booty, had a light Christmas dinner and went home at 5.30pm. At home, we opened some presents (mostly from each other or for Max) and then went over to our next-door neighbour’s (Joan) for another, huge and unexpected, dinner with her and her family. Really, a lovely evening. We were home by 10.15pm – a lovely day. Merry Christmas, Max.

24 December - Christmas Eve

The ventilation he’s on is the high-frequency version (since his lung bleed, as this is more gentle on the lungs). Today they tried to change it back to conventional ventilation. He didn’t do well, only lasted about 10 min before they put it back on.
He sucks really well – especially a dummy and his own thumb and fingers. He’s still on chloral (sedative) reasonably frequently, to keep him calm as every time he wriggles he ‘de-sats’ and can’t process the oxygen properly.
His sodium output is still high, but his stoma output is good. His Haemoglobin is low – so will probably need another blood transfusion soon. I have a cold, so the blood will need to be blood bank stock again. My expressing isn’t brilliant – whole day total was only 59ml.
We went into the unit at about 10.30pm to take Max his stocking, to take the unit staff a big box of lollies, and to read Max The Night Before Christmas. The staff have decorated the unit, and not there’s Christmas stickers all over his incubator! It was a lovely night.

23 December

Oral feeds up to EBM 3ml profused over 1 hour. The cardiologist did a cardiac echo and said the duct is “tiny” (<1mm),>

Photos: 20 Dec - sucking thumb; 21 Dec - what a sight - dummy, beanie etc; 21 Dec - Max's incubator, and ventilator, and other assorted Machines; 23 Dec - Max prefers to lie prone - apparently this is good for premmies as there is support for their chests and gives them something to push against.

18 December

Indocyd begun again to try and close the heart duct (it was stopped last time due to his bowel surgery).

Pic - from 17th Dec.

13 December

We got a call at 9am. Bad, bad news. Max had ‘self-extubated’ at about 7am, which means that his ventilation tube had somehow moved, sufficient for him to not get any respiration support. He also has a pulmonary haemorrhage, and had to have cardiac massage to bring him back to stability. We nearly lost our darling little fighter.
We went in had had a discussion with Dr Morris. He was very subdued, telling us this is a huge setback. While he didn’t feel we were at that stage yet, he did say that if Max doesn’t rally from this, we may need to discuss removing care. Oh, Max.
We stayed the whole day, and I stayed overnight (repeatedly visiting him).

11 December

Cuddle again – and another weigh. Now up to 680g – 60g put on in 7 days.

Photos: one without any tubes - not very attractive! (5 Dec); on pink sheets (7 Dec); On blue sheets (8 Dec); Mama's tentative cuddle (8 Dec); Closeup of Max with hat during a cuddle (11 Dec); closeup (bit fuzzy) of just how tiny his hands are (11 Dec).

4 December

Max well enough to be (carefully) taken out of the incubator (still attached to all equipment) for a cuddle. I was extremely scared and extremely emotional, and while I tried to relax, I simply was too aware of all the tubes, and of this tiny body in my arms. We had our first family photo!
They weighed him before putting him back (a drama in itself which caused my pulse to race) – he’s now 620g, 10g less than his birth weight. Not too bad considering all babies lose weight after birth and Max has had major surgery as well.

1 December

Up to 2ml EBM per hour.
The abdominal swelling was still a concern, so they x-rayed. Air was found in the abdominal cavity, which means there is a leak from the bowel from a tear. Various options were then discussed – do nothing & hope it heals itself, insert a drain to release the air, or have surgery. This last option was eventually decided upon, as the tear may be an indication of NEC (bowel infection). I called Mark, who left work and came straight down. There was a debate about where to do the surgery, as the only people in the state who can do it were either off work that day or at the Women’s & Children’s Hospital. They began to prepare a transfer cot just in case Max had to be taken to WCH. In the end, Dr Kirby and team came to Flinders and performed the surgery in the unit.
We were given a lot of information very quickly. We realised Max could, quite possibly, only have an hour to live, and we hadn’t told anyone. We felt very alone, yet didn’t want to call people with no real information other than ‘he’s having surgery’.
We asked for him to be baptised, which was done by Rev Margaret Rowell, Anglican Chaplain at FMC. She was wonderful and the ceremony was quiet and sombre. I was so shaky that we only have a couple of fuzzy photos of the event. Such a different ceremony from the celebration we wanted to have for him. However, I wanted to know he’d received that sacrament before we lost him, should it happen.
We sat in a quiet room after signing all the forms, and cried together. He’s only nine days old. He’s so tiny. We realised how much we desperately wanted him. We waited.
The short story is that the bowel was indeed infected with NEC and 8cm was removed. He now has an ostomy (two ends of bowel protruding from his abdomen), which will remain there until he is well enough and big enough for it to be re-sectioned. While he is still alive, and this in itself is amazing, there was a concern that the bisection of the bowel may have been made too close to the stomach, meaning that there may not be much length between the stomach and the stoma for him to be able to digest food properly.
We called family, we stayed the night. Max fought hard to stay with us.

30 November

Got a call on my way into the hospital (looking for a park) telling me that Max has had a small lung bleed. Linda (nurse) didn’t seem too worried, but said he would be getting a blood transfusion. It was too late in the day for me to donate my blood, so they used blood bank stocks.
Later, I was sitting next to him and thought his abdomen seemed a bit swollen. Mentioned this to staff, who said they’d monitor it.

Mark’s first day back at work.

29 November

Indocyd (spelling?) was started today to close his heart duct, which in term newborns normally closes naturally within 10 days of birth, but in premmies often stays open. This duct alters the body’s circulation and the ability of the lungs to properly process blood, so it needs to close. Sometimes, the drugs don’t work, so the duct has to be closed surgically.

The photos - he has to wear an eye mask to protect him from the blue lights (pic 25 Nov); Mark's wedding ring fits loosely right up his arm to his shoulder (25 Nov); our bruised baby (27 Nov); his birth announcement in The Advertiser (29 Nov).

23 November

Second cranial scan. No different from yesterday, which is a good thing!
Today he is quite active – is he responding to voices? His urine output is increasing, and he seems to be ‘sucking’ his thumb!

22 November 2006

First cranial scan – basically fine, but a very small bleed noticed in left ventricle. We are assured that so far, this is nothing to worry about. His entire body is bruised, especially his head and legs. He is being put under a blue light for jaundice, which will also help the bruising by removing the bilirubin more effectively. He's so tiny - but kicks his legs about quite vigorously. I wish I'd been able to feel some of than when he was still in utero.

21 November 2006

I will fully publish the story of Max's birth later on, but basically my waters broke at home at about 11pm on Tuesday 21 November 2006, when I was 24 weeks and 2 days pregnant with our 'last chance' IVF/ICSI baby.

After a frenetic and terrifying 4 hours, we welcomed our tiny son at 3.08am on 22 November. He weighed only 630g, and his chances of survival were only around 25%.

The following entries have been taken from my diary, and range from the clinical to the emotional. We adore our tiny, fragile boy, who is showing such a thirst for life. May his story be a long one!

Welcome to Max's Story

3 January 2007
Today our son reaches six weeks of age. He was born at 24 weeks' gestation and is still fighting a daily battle for life. This blog is mostly a bit of therapy for me, his Mum, but also as a record of his struggle for existence and our daily struggle to cope with the ups and downs of such a premature baby.

I'll probably have a mix of current and old information in this blog - depending on my mood, Max's mood, and what I feel like working on at the time.

He's a beautiful boy, much loved, much wanted, and he is a tough little fighter who has beaten many odds in his journey so far. Long may you continue, little man.