hi from sami

hi i’m sami. i have a friend. he’s a bear called thembile. i don’t have many other friends as my doc says i’m not aloud out of the howse yet. but today i krawled into the ka while momi and dadi weren’t luking and went to PAAAAARRRRRTYYYY!!! my unkal bari said something about jesus being born. and dadi had a smokie thing in the pool called a seegar wot unkal bari brought back from from hiss holyday in kubar. i had to stay in anotha room the hole day to stop the cherms finding me (and dadi’s seegar smoke).

i way 3.8 kilograms. i’d like to no wot a keelogram is. all i no is it’s a lot.

momi has been feeding me such yumi milk for the last 2 weeks. it has been difficult not to grow. i luv my momi (and dadi and big brotha matt). i luv you too. thank you for luking after me and my momi and dadi and brotha ova the last few months. it has been a difficult time. the nurses and docs in the hostipal were very nice to me. they stayed awake the whole time. i miss them. why do momi and dadi want to sleep?

dadi is teeching me to tipe.

luv sami

pee ess: momi and dadi long legs and my big brotha matt say hapi krismis to you all

4 months old!

A lifetime. That's what we hope to put between our son's birth experience and us.

Sam has been hard at work on his milk machine for the past 10 days. Not a bottle in sight! Big up for mom and the boy! He's certainly gaining weight for it - the scale tipped at 3460 grams on Wednesday last week.

There was a mixed visit to the paed last week. The good news: his head growth rate has returned to normal. The bad: he thinks all the discomfort that Sam has after feeding are related to an intolerance of something in Mich's milk. After working so hard (and succeeding) at breastfeeding for the past couple of months this was very frustrating news for us.

We're now looking for anything, and I mean anything, that will help rev up a gluten-, wheat- , dairy- and any other tasty food-free diet. Adding a daily regimen of porridge and rice to the quarantine still in place makes it feel a lot like a prison round here. Thankfully fruit is still on the menu. I steal a bite of a chocolate once Mich has gone to bed!

That's about the news for now. Ah yes - another big milestone - tomorrow we return the hired breastpump!

The Matt mirror

Matt has a knack of capturing the moment... Here he is, dressed in full medical regalia administering vital mooties to his Baby Sam. Not at all far off what we do a good deal of the time.

Other Baby Sam continues breastfeeding with gusto! Mich down at the mo with a stomach bug - a mystery as to how she got this! Rapid healing needed.

3220 grams!

Young Samuel managed a full day on the boob yesterday! And put on weight in the process - if scales are to be believed then it was 60grams. An awesome answer to the last prayer request. Thank you.

Sam had his second out-of-hospital checkup this week which was generally showing that he is making good progress. Paul was slightly worried that his head is growing just faster than the maximum rate for someone his age. This could imply that his the initial brain haemorrage he had is still having an effect or that the haemorrage is continuing. However the fact that he remains alert and his fontanel (the gap in every baby's skull that closes up over time) soft and undistended would suggest that this is not happening. Given that, he is happy to wait until the next checkup in two weeks' time to see if the growth rate continues at the same pace. If it does then we'll do another brain scan. Not something we are keen for. Please pray for protection for this little guy's brain.

The quarantine is still in place. Mich's cabin fever is thankfully still at manageable levels - every now and then she escapes to water the plants! With some time off work for me approaching she is looking forward to a bit more of that.

More growth

I have a little man lying on my shoulder. Idive in at night to administer the bottle while I still can! He weighed in today at 2960 grams - an increase of 150grams since last week's 240gm increase. Good progress given that he's doing his best to breastfeed. It's amazing how much energy/weight is used up doing this. Again we have seen wonderful answers to prayer on that front with him currently managing to have goods feeds from the breast twice a day of six or seven feeds. Looking to up the feeding now over the next week with the best midwife on the planet.

First 10 days at home

There was a point somewhere in early September when writing this post would have seemed extremely unlikely. At that point our little boy’s stomach was blown up to three times its normal size, he was being pumped around the clock with 4 antibiotics, blood transfusions and lungs fully ventilated. There was a very real likelihood that he would not make it and our doctor prepared us for the worst. Now he is at home. Pause to consider the miracle that has taken place. I do. Often.

It may be difficult for those of you who, like us up to 3 months ago, have only experienced the joy of having a term or near term baby to comprehend the absolute elation that our family has experienced for the past 10 days. For the first time in 3 months we are all together in the same house. Matt thinks it’s Christmas having his mom and dad back with him. He wasn’t so sure about his younger brother at the start - his first two comments in the car on the way home from hospital sitting next to Sam were: “Who is THIS?” followed shortly thereafter by “This car is very full of people!” Thankfully that only lasted for the car trip and he now dotes on him more than anyone else. He has claimed the lower metal tray of Sammy’s hospital trolley as his “bunk bed” and often has little naps there below his sleeping brother.

It’s brilliant starting to feel a vague sense of normality after so long in hospital and to be experiencing some of the normal things of early parenthood, like the exhaustion of continued sleep deprivation or lying in bed at night listening for your newborn’s breath. The normality gets rocked a bit by the continued breast pumping, the breathing monitor and the three medicines and five supplements that he needs daily.

I’ve been sporadically updating this blog. Do you know if you type SamuelBerry as one word into Google it's the first hit! If you’ve been following it you’ll know that Sammy is coping very well with being away from his corner in the NICU. He had his first visit back to his beloved nurses and doc on Wednesday for his 1 week checkup and had gained 250grams to 2.7 kgs. Big up for the boy and his amazing mom who has now pumped more than 70 litres of breastmilk to sustain that growth rate! Everything hinges around weight and infection control at the moment so we continue our best efforts to emulate the NICU conditions with full-scale germ warfare and limiting visitors to grandparents, our sisters and medical staff. Our hands are beginning to feel like crusty old leather from all the handwashing going on.

As an encouragement for the hundreds who have prayed for Sam and us (and for those who still doubt there is a God who answers prayers) I did a little scan of the blog and counted eighteen specific prayer requests since his birth in August. Only two were not answered within the space of three days. Anyone in the know will tell you exactly how much can go wrong with these littlies: eyes, heart, brain, kidney, lungs, liver, intestine, bowel, infection. Prayer is certainly in no small part also the reason that Mich, Matt and I remain relatively whole, in body, mind and spirit. More than 90 meals have helped too! We continue to be blown away by the support and love that has surrounded us so faithfully all this time. We’ve heard so many heartening stories from parents of their kids taking on Sammy as their evening prayer project.

I’ll be keeping the significant updates coming mainly via the blog and occasional emails, particularly around weight gain. On that score and the continued manageability of this all for us, please pray that Sammy’s strength will increase to allow him to breastfeed the whole time. Currently he can only manage one or two shots a day. Getting this right would slash the amount of round the clock effort required on the breastpumping, equipment washing and sterilising front. Apart from that we just continue to be very, very thankful!

With love and thanks
Terence

One week checkup

Sam had a little outing this morning back to hospital for his first checkup. It was a great success - he weighed in at 2720grams (up 240grams on a week ago). Paul and the nurses were very happy with his progress. It's hugely encouraging for us that all these long hours of feeding are paying off in the form of good weight gain and staving off infections.

So far we've been almost 100% successful in maintaining the quarantine of our house and our hands are beginning to feel like crusty old leather from all the handwashing going on. Thankfully we have all been fully healed of our colds.

We're dealing with what seems like a milk catastrophe in that every bottle we are defrosting is tasting a bit off. So we've probably thrown away 20 bottles before I stopped to consult the Internet on this and lo and behold the first Google hit for "frozen breastmilk tastes sour" was a gem - see http://parents.berkeley.edu/advice/nursing/grosstasting.html As you will see a number of pumping moms from the Berkeley (California) Parents Network have been engaging with this problem and conducting all sorts of experiments with their milk. Some of it's very amusing if you have ever experienced the joys of long term breastpumping. Given that we're sitting on around 30 litres of frozen milk we are VERY interested to know how to play this one and the hospital staff don't know of the problem. If anyone has any other ideas out there please post a comment.

Here's a shot of the Berry Boyz the morning after their first night at home together.

Three glorious days at home

<-- Matt, Mich, Sister Alison and Sammy crossing the threshold Matt's first comment when faced with the sight of his baby brother on the car seat on the return trip from hospital: "Who's this??" Followed shortly thereafter by: "This car is very full of people!" ;) It feels like our house is as well with two little men ruling the roost most of the time.

We're just loving having Sammy at home with us. He's been coping quite well with the semi-sterile, non-airconditioned, quiet and dark-at-night environment. Matt thinks it's Christmas having his brother and both parents at home together.

Suck or Starve worked! The bottle feeding is going well and the only breathing worries have been during feeds when he has twice choked and a bit of revival was required, but nothing near warranting our newly honed CPR skills. Mich and I are truly enjoying the relative normality of sleep deprivation, the hours of rocking, sitting trying to burp a little lump at 4am, typing with one hand, lying wide-eyed at night listening for the breathing and other typical wonders of the early days of a baby at home. The seven different medicines during the day, visitor quarantine (limited to his grandparents, our sisters and the medical staff) and continued breastpumping tend to bring us back to the reality of the miracle that this little boy is!

We will continue to honour our God who creates all things and the amazing NICU team at Vincent Pallotti for saving and sustaining Sammy all these months. Though we're not missing the living in two places we are sorely missing the NICU team who loved and cared for Sam, Mich, Matt and me through this trying time.

Day 83 - Homecoming on Wednesday

Sammy B seems to have taken his doc’s Suck or Starve (see previous post) threat seriously. It in fact commenced yesterday and the boy is managing to survive without the nasogastric tube – he even gained 10grams yesterday (to 2490grams). So we were told today to get ready to bring him home on Wednesday morning!!! Mich is rooming over at the hospital tomorrow night with Sammy in her bed and then he’ll cross the hospital threshold early on Wednesday morning. Hallelujah!

I’ve attached an at- birth and a today shot just to remind you of the absolute miracle of this little chap’s life and healing. We’re so thankful to Our Creator for him.

Our house has gone into full battle mode with the final preparations for his return and making sure that we thank all of the incredible staff at the hospital properly. Just to make life interesting all three of us at home have a cold. Please prayer for our healing before Sam gets back and that he will continue to suck his bottle and boob and not sleep on the job as he prone to doing.

Limited brain capacity for much more. Thank you for helping us along this road we’ve walked sometimes but been carried mostly.

With love and immense gratitude
Terence

Day 79 - SOS from Monday

Hospital fatigue is finally hitting us and we are desperate to get our boy home! Suck or Starve is what the good doctor calls the next tactic. It's all about getting little boys with double chins to drink on their own without a tube down their noses. We've pretty much jumped the weight and breathing hurdles - feeding remains the issue. With the tube in he continues to grow nicely - around 2.4kgs currently - which is excellent news on the infection protection front. He's getting the hang of feeding, but it's slow going. So on Monday the tube comes out for 48 hours to help kickstart him into feeding without it.

I often look back over these posts and past months and reflect on how many prayers have been answered. OK so we're still in NICU but we have a little boy who is alive and made in the image of his Creator. We're so grateful to God for Sam and for you, the spiritual, physical and emotional rocks upon which we stand. Please pray that our boy learns how to suck the bottle. or better still the boob!

Day 75 - Quarantine warning

Without the awesome support we have received from you there is no way Mich, Matt and I would be in any condition to have stayed the course for so long! Thank you again.

We’d love (and aim ultimately) to thank each of you personally. We’re now steeling ourselves for the quarantine phase which our doctor has made clear should be one of near isolation until he reaches 4kgs. So while we’d love to introduce you to this little miracle it may unfortunately be a few months before you get to meet him. High infection control and the doc’s recommendation of only grandparents visiting will be the order of the day to avoid a return to hospital! This is probably the most difficult part for us as there is nothing we'd love more than for everyone who continues to pray and support us to meet him. Maybe we can rig up a visitors’ oxygen tent or something!

Day 72 - Doc and D-day

Everyone (especially his doctor Paul - pictured) is chuffed with Sam's current progress. He now weighs 2.2kgs and has for about three days not had any major breathing lapses - the only ones happening at the moment are after feeds when he gets quite bad reflux but at least we know why that is.

So the remaining hurdle is getting the feeding right which is starting to happen. Sam is on 4 hourly feeds of 60ml - he sometimes takes up to 30 ml from the bottle and the rest via the nasogastric tube. He gave Mich some welcome encouragement on Wednesday by taking 5ml from the breast. Bliss for her after more than 500 pumping sessions to date. Only a teaspoon in comparison to the 50 litres produced for him so far but a start nonetheless (he is weighed before and after breastfeeds to gauge how much he takes if anyone was wondering)

So the talk is still of a departure from NICU in the next 10 days. With the good progress we have seen we are starting to look forward to this.

Day 68 in NICU - Brothers in arms

There was a moment yesterday in NICU when time stood still for a little two and a half year old as he got to cuddle his baby brother for the first time. He had been dotingly practising up till then with his "baby" at home whom he loves to put in the pram with all his medicines (little plastic ABC blocks) piled up next to him. It was a tender moment! In his excitement Matt then poked his finger into Sammy's eye but I expect that's something he'll be doing for most of the rest of his life.

Mr Weigh-More-diet clocked in today at 2.1 kilograms. He hit the magical 2kg mark on Friday which is one of the three remaining barriers to his homecoming. The other two are breathing and feeding. On the former he's doing very well - the serious apnoeas are few and far between but there are sporadic bursts of breath forgetfulness so we're not in the clear there yet though Mich is getting very good at averting them as they kick in (I still rely heavily on the sats monitor and the colour of his lips!). On the latter, his feeding, he is still getting the bulk of his milk+mutis via the nasogastric tube but is up to 60ml every 4 hours so we are seeing the milk stockpile slowly being eaten away. We're defrosting bottles pumped on 15 Sept today. He's gradually being weaned onto taking milk from a bottle - today he took 15ml (three teaspoons) which for him was an exhausting ocean. He has to be feeding well from the bottle before he exits. (Of course there's also that double chin - but it looks like time will have to heal that)

So relatively speaking things are looking pretty good. We have been testing the apnoea monitor for the past couple of days and steeling ourselves for the next phase which our doctor has made clear should be one of near isolation until he reaches 4kgs. So if you're in town it may unfortunately be a few months still before you get to meet the little fella. High infection control will be the order of the day to avoid a return to hospital! This is probably the most difficult part for us as there is nothing we'd love more than for everyone who continues to pray and support us to meet him.


Tomorrow we check the alphafeto protein levels again.

Day 60 in NICU - 4 days of independent breathing, doubled birth weight, halved AFPs

Baby clothes for the first time

The good news continues. Sammy has been breathing on his own since Thursday morning. I thought I'd wait a few days to check that he means it this time and it feels like he does! He still has apnoeas a few times a day but these are declining quite encouragingly. Today’s Alphafeto Protein (AFP) level was at 16,000 - exactly half of what it was a week ago. AFPs are the things that correlate positively with apnoea levels. Still a way to go on them but very positive sign at any rate. Paul and the nurses are becoming decidedly upbeat.

He's been out of the womb now for exactly 2 months but we generally think of him as still needing to be born in a month as that's his developmental age. Though looking at him with the double chin he is still sporting below (the final remnant of his infections) I would put him closer to 80.

Fat boy weighs 1820 grams – more than double his birth weight – and sucked a couple of times on a bottle today for the first time (he’s still fed via a pipe down to his stomach) So many encouraging answers to prayers in the past week.

On a sobering note we did our infant CPR course with other family members over the weekend and are beginning to prepare for the little fella’s homecoming. We are still genuinely terrified at the prospect! Paul reckons we should be thinking around the end of the month if his progress continues at this rate. Please pray that it will because actually it will be incredible not to have to spend four to five hours a day in a hospital any more. Pray too for the continued lowering of the AFPs and that Sam’s reflux (food coming back up from his stomach – the doctors generally laugh at my descriptions) would diminish as this is one cause of apnoea.

Mich continues to pump for all she’s worth and somehow retains her sanity. Matt keeps telling us he is “a very sick baby” but remains the life and soul of the mad party that is our house! The food suppliers have been incredible – what an awesome help that is to us. Thank you guys.

We are humbled by your support in so many ways as ever

Terence

Day 59: 2 months / -1 month old

Happy 2 month birthday Sammy B! Cake and popcorn for the nurses. Lovely thickened milkies for you little man!

Day 53 - What's the Alphafeto Protein?

It’s night 53 in NICU for the Berries and we are back at medical school again – studies happening largely via the internet!

Sammy unfortunately had to return to the nasal prongs to support his breathing less than a day after he came off them. He was having frequent apnoea episodes and too many associated oxygen desats. While this was disappointing, the fact that he breathed unassisted for half a day so much earlier than expected was incredibly encouraging for Mich and me and, I suspect, many of the nurses. We now know that he doesn’t need any additional oxygen - the prongs are just giving him supportive air pressure (2 litres per minute) and generally assisting his breathing response by tickling his nose. It’s this instinctive breathing response, or rather the sporadic lack thereof, that is now the specific cause for concern in his breathing.

We had another of our chats with doctor Paul yesterday. We now know that the Hyaline Membrane Disease has resolved so this is no longer causing the desats. A test of Sam’s blood on Thursday showed that something called the alphafeto protein (AFP) count in his blood is double what it should be for someone his age (32,000 vs around 16,000 – in babies older than 3 months it sits around 150 or less). When in the womb AFP binds the sex hormone estradiol to prevent it from affecting the fetal brain. It’s not known medically whether this AFP is then the cause of apnoea but either way it is an excellent indicator in young babies of their propensity to have apnoeas. The fact that Sammy’s is so high is not good news and unfortunately nothing can be done medically to reduce the count. Over the next six months it will naturally reduce to negligible levels but during that time he will be at very high risk of continuing apnoea attacks which are one of the main causes of Sudden Infant Death Syndrome (cot death). Paul has therefore suggested that he is going to be in hospital longer than originally anticipated. He wants him to go for at least a week without experiencing any apnoeas before considering him for release. He has not yet had a day without any! We continue to take things a day at time.

On the positive side, apart from the lungs Sammy is gaining weight at a rate of knots, now clocking in at 1640 grams (3.6 pounds).

Please continue to pray for our little man’s lungs, specifically an end to these apnoea episodes and a significant lowering of his AFP levels.

Thank you so much for your faithful support

Terence

Day 51 - Back to nasal prongs

Our little man lasted half a day breathing entirely on his own but then got very tired so had to return to the nasal prongs supporting his breathing with 2 litres of air flow per minute. At least they left him at zero extra oxygen.

A bit disappointing but this doesn't take away from the momentous move that was made yesterday in his breathing.

4 Oct - Awesome news on day 50 - He breathes on his own!!!

Mich arrived in NICU this morning to find Sammy breathing unassisted. No more oxygen! Just his own little lungs pumping away. Periodic desats still happen but no frequently than when he was on the oxygen. We are completely blown away by this and it comes weeks ahead of what we were expecting. This is a direct and unequivocal answer to the prayer request that I made in yesterday's email update. Coincidence that such a big leap occurs today? I think not.

To the many faithful and wonderful supporters who prayed yesterday and last night God has heard you! Thank you, thank you, thank you!

More great news is that the jujenostomy tube has been removed and replaced with a nasal gastric tube from which the little guy had his first 20ml feed – these now occur every 2 hours.

In this weird place in which we find ourselves I reckon Isaiah best captured how we feel when he wrote many centuries ago:

“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

2 Oct - Little lungs and humble pie

I’m humbled by the nurse that buys premature nappies for us on her days off, or by the twenty four families (one in the UK!) that are feeding us for the next 2 months (and the friend from church co-ordinating the logistics of that mountain of food), or by the doctor who regularly called to see how our son was at 2am when he had a four week-old baby of his own, or by my wife who woke up every three hours for the five weeks to pump milk for a baby she had barely touched until ten days ago, or by the strangers who pray daily for his health and our sanity, or by family and a church community that loves extravagantly expecting nothing in return, or by nurses who work twelve hour shifts day and night, or by the cover of a medical aid. Over the past seven weeks I have come closer to grasping grace than ever before.

First bath - 1 Oct 06

And we continue to wonder at Sammy B growing. He’s now seven weeks old and weighed in today at 1480 grams (3.3 pounds) - a significant gain from his birthweight of 860 grams (1.9 pounds). He’s now getting 10ml of his mom’s breastmilk every hour directly into the jejunum, the bit of intestine just below the stomach. The focus is now his lungs.

Since his birth the phases we have been through look something like this:
the initial trauma phase – shock and grief associated with such an early and stressful birth;

then infections – ten days on our knees and on the edge of the little man’s life – antibiotics, disintegrating veins and ventilators;

the miracles came next – two weeks of unbelievable healing and positive moves – drips being pulled out, antibiotics stopped, closed incubators;

we’re now in the plateau phase – good progress but the slope of the graph has flattened markedly with stabilised feeding and steady weight gain but seemingly little progress on his lungs – bored doctors;

The next phase? the shift from NICU to home perhaps – our anticipation and excitement for this has been reduced to fear in the past weeks as we witness the daily oxygen desaturation and apnoea episodes from these little lungs that can’t quite hold their own.

His lungs remain the primary concern now and will be for many months and possibly years to come. Sammy is suffering from something common to most preemies born as early as him - Hyaline Membrane Disease. The trauma of the (life-saving) ventilator and the earlier infections on his very immature lungs resulted in these membranes forming within the alveoli thus blocking effective oxygen exchange with the bloodstream. Practically this means that he still requires assistance with his breathing in the form of a bit (only 4% today) of extra oxygen and some positive pressure. He seemed to take massive leaps in getting to this stage of low level breathing assistance from full ventilation and I suppose we were expecting the leaps to continue but they have slowed right down. Without any other factors (like the swelling from the infection) clouding the picture we can often see just how difficult it is for him to breath. In the past ten days Mich has done many hours of skin to skin kangaroo care so she can feel the desaturations coming and is able to stimulate him appropriately. But at times he will simply stop breathing and turn blue while the monitors start screaming and nurses come running. It's scary when this happens in NICU. We don't like to think too much of how we'd deal with it at home.

Last week Paul happened to mention that if he continues to gain weight we could be looking at getting out of NICU by the end of October but to get there Sam’s lungs need to be working a lot better. Despite our hesitation at this prospect people less in the thick of things have caused us to recognise the immense progress Sammy has already made in the past month. There is every reason to believe he’ll be confidently breathing on his own in a month - we have witnessed so many miracles in this little fella’s life already! And we are confident that God will heal his lungs fully in time. I forgot to mention that he had his first real bath yesterday and seemed to really enjoy it. I suppose one would after seven weeks of no washing!

If you are praying please ask for full healing to occur in his lungs. We’d also like to ask you to pray for Matt who is thoroughly sick and tired of this whole thing and wants his Mommy back now! He frequently wakes up at night and much earlier than normal (is there such thing for a two year old?) which badly knocks our sleep and energy levels. Pray for peace for him. Mich always needs your prayers for energy and “double sleep” when she does – it’s incredible the way she is coping with this!

Thank you for sticking with us. It’s been a long haul to now but Sam has not had an infection for over three weeks, he remains on the nasal prongs and his weight will soon have doubled. We have cooked only a handful of meals for ourselves in seven weeks - a massive up for all our food warriors (the manna brigade) past and to come! It’s been a humbling time but I have an incredible sense of gratitude in all of this too.

I look forward to mails giving only thanks.

With love
Terence

Kangaroo care and Prince Caspian in the NICU

28 Sept - HMD and manna

Samuel B continues to grow. He’s now six weeks old and weighed in today at 1420 grams (3.1 pounds) a significant gain from his birthweight of 860 grams (1.9 pounds). He’s now getting 10ml of his mom’s breastmilk which bypasses his stomach directly into the jejunum - a section of one’s intestine. The jejunostomy tube remains necessary to prevent a distended stomach placing undue pressure on his lungs. The lungs remain the primary concern at present and could possibly be for many months to come and perhaps years.

Sammy is suffering from Hyaline Membrane Disease which prevents his lungs from doing their work adequately. The trauma of the (life-saving) ventilator and the earlier infections on his very immature lungs resulted in these membranes forming within the alveoli thus blocking effective oxygen exchange with the bloodstream. Practically this means that he still requires assistance with his breathing in the form of the nasal prongs and a bit of extra oxygen. Getting to this stage of low level breathing assistance was a big jump but we have now been here for a couple of weeks and the steps forward on this front seem to be slowing down. Without any other factors (like the swelling from the infection) clouding the picture we can often see just how difficult it is for him to breath. Mich and I kangaroo care him regularly and, for me especially, he has times when he simply stops breathing, turns blue and the monitors start screaming. It's scary when this happens in ICU. We don't like to think too much of how we'd deal with this at home.

If he continues to gain weight we could be looking at getting out of ICU within the next 6 weeks . To get there though these lungs need to be working a lot better. He's got through so much on the back of your prayers. Thank you for your continued support in this. Please pray specifically for the development and healing of his lungs.

The manna bit is the 24 families who are up to cooking for us over the next couple of months!

With love
Terence

21 Sept - Today's vital stats

SAMMY's VITAL STATS TODAY

Weight: 1265 grams (from 860 at birth)
Lungs: Nasal prongs with oxygen at 25% (air is 21%); saturating his blood fine at that level
Drugs: No antibiotics, caffeine for the lungs and a whole bunch of other goodies
Food: 9ml/hour of breastmilk (with additives)
Kangaroo mother care: daily
Brain: Narnia book 4 about to begin!
Doctors: satisfied
Nurses: bored
Parents: chuffed

19 Sept - Babies in glasshouses....

Sammy B is edging his way out of the N(eonatal)ICU! Today he relinquished his anchor tenant position in the intensive care section by making the very bold move to the high care area of NICU. He’s quite chuffed with his new glass house which most of us would call an incubator – up to now he has been nursed in an open incubator because of all the tubes and ventilation equipment. He’s down to one line in his left arm for his kickers and lung mootie! He’s still only requiring the nasal prongs. Yesterday he came off all of his antibiotics. The breastmilk is shunting in at 8.5ml per hour and nice little projectile poos are exiting at about the same rate. He was weighed today at 1265 grams (from 860 at birth).

These are massive moves!

The pictures tell a better story really...

Terence, Mich and Matt Not Mich's hairy chest

daBerryBoyz

17 Sept - Big up for dad

Sammy forgot to celebrate his 1 month birthday on Friday and has been a bit down ever since. No visits to the paed's office though, just an uncomfortable gut resulting in frequent desaturations and a generally unhappy little muppet. Unfortunately this has meant that his breastmilk feeds have had to be halved from 8.5 ml per hour (6.5 at last post) to 4. He's had to revert to two intravenous antibiotics so a line was placed in his arm again after a blissful few days of none at all, just the feed tube going into his gut via his mouth. To give his tummy a break Paul has today tried unsuccessfully three times to bypass his gut and get the tube feeding directly into the next tract of the digestive system. This meant three X-rays to check each time whether the pipe had found its mark. So he's had a rough day of poking, pushing and being irradiated but at least he's still breathing OK on the nasal prongs though the general state of discomfort has meant frequent oxygen desaturations today.

So it was to my great surprise while finishing book three in the Chronicles of Narnia that Vicky said it was time for me to have a hold of him. Whoa! She took the view that if he was crying anyway it might calm him down to do something different for a bit. So I had a glorious 10 minutes this evening holding my little man for the first time - almost five weeks since his birth. I think we both couldn't quite believe it as we stared like rabbits caught in headlights into each others eyes in between bawling sessions (from both sides!). He is still very very small but his eyes have life, curiosity and fight in them. He's warm and full of attitude.

I think I forgot to mention in earlier posts that he has recently weighed in at 1300grams which everyone was quite chuffed about.

Mich and I are both starting to feel very fatigued with the routine of hospital, work, home, Matt, eat, hospital, sleep now well established. She continues her superhuman effort on the breastpumping front and is now spending longer periods at the hospital as she got the skin to skin kangaroo care going this week. Frequently I stop and consider that she hasn't had more than 3 hours consecutive sleep for 5 weeks and probably won't for another 10. Don't try that one at home!

We are being sustained by One greater than us!

13 Sept - Feed me!!!

Sammy B continues to push forward, riding the wave of love and prayers from so many. He's the most prayed for person I know, second perhaps to George W. It's working guys. He's onto 6.5ml of breastmilk an hour (up from 4ml on the last post) and if all continues to go well will be onto 2 hourly feeds in a few days. Like a proper baby! Thankfully there is no shortage of breastmilk as a quick shot of the freezer revealed on the weekend - go Michy!

Today's further excellent news was that intravenous the antibiotics were stopped this afternoon and are now administered directly into his gut with his Mom's milk.

He is having his first bath on Friday - in an ice cream container! Mich continues to kangaroo care him skin to skin for a couple of hours every day.




Excerpt of recent conversation with Matt:

Matt: "Where's Mommy?"
Me: "You tell me where Mommy is"
Matt: "In the kitchen"
Me: "No I think she's somewhere else"
Matt: "In the breastpumping room"

Breastpumping is big in Matt's life. At the drop of a hat he'll conjure a makeshift breastpump from the nearest funnel, rip up his shirt and pump his boobies for all he's worth. The other day he generously added the pump's imaginary contents to my tea.

10 Sept - Dealing with the good news!

“Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.” – CS Lewis

Mich and I are struggling to process the miraculous of the past four days:

-

On Wednesday Sammy came off the ventilator where the day before he barely breathed a breath on his own. The progression we and the nurses were expecting over at least a week was from ventilator to advanced CPAP, to CPAP and then to nasal prongs (then to unassisted breathing). Paul had other thoughts during the early hours of the morning and boldly decided that the best track for Sam was to jump him directly to the nasal prongs. He has been breathing with them ever since and saturating his oxygen beautifully!

- This great news on the state of his lungs in itself would have been more than enough good news for us but our spirits lifted yet another notch to hear that his breastmilk feeding had resumed at 0.5ml per hour where three days before a surgeon was examining him with the concern that his gut may have been dying.

- The lines going into his veins were reduced to two from three.

- The infection levels had dropped right down to the extent that the number of antibiotics he was being given was halved to two

- On Thursday Mich spent a good few hours gazing into his bright blue eyes and listening to his little mewl. Breastmilk was flowing into his continually strengthening gut at 2ml per hour (you try quadrupling what you eat in a day!). The swelling in his stomach reduced significantly.

- Between Friday and today there has been continued strengthening in his little bod and further reduction in the swelling. Tonight he was up to 4ml of milk per hour!

- But the highlight for us, almost four weeks since his birth, was Mich being permitted to have skin-to-skin contact for the first time today! It was a glorious sight seeing this little guy perched on his mom’s chest for the first time. A massive leap forward. Sam went onto the same type of monitor that all the other babies in ICU are on. Everything feels a lot more normal.

There’s a new spring in our steps and we are gradually allowing our mindsets to make the shift from avoiding death (or a living death) to enjoying the life that is becoming so evident.

Thank you for remaining so faithful to us in your prayers and actions. Please continue to lift up Sam’s little body and his guardians as together they keep the bugs at bay and Mich who continues with the battle of the breastpump - I stand in awe at the NICU freezer rack chocka with about 120 little brown bottles of the precious stuff.

Know that the retelling of the story is happening in a corner of the NICU at a hospital in Cape Town.

With love

Terence

A switched off ventilator!! -->>

8 Sept - Some words from Mich

Mich doesn't get much time for communication between breastpumping, NICU and "uppie mommy". Here's what she wrote earlier today to a friend on her birthday...

"We are really feeling blessed to have so many people holding us up and asking God for miracles for Sam. He has answered. We are in our third day of euphoria as this little tyke keeps breathing on his own and looking so "normal" and peaceful. I struggle to leave him most of the time but now more so as he opens his tiny, new, glassy blue eyes and we gaze at each other, this little person who I was not supposed to see for so long still."

7 Sept - Floating on thin air

I am still utterly incredulous at what has happened to Sammy over the past day and a half. He continues to breath pretty much on his own assisted only by the nasal prongs. The number of antibiotics has been halved to two. His blood gases and O2 saturation levels are looking good. The infection levels are coming down nicely. His gut seems to be handling the 2ml of expressed breastmilk that is being injected into it every hour and today Mich got to look into his eyes for the first time. .. To us (and the nurses) this is all a miracle! Even the good doctor Paul is encouraging a continuation of the prayer levels!

Whoever was praying for our paed on Tuesday night is right up there with the saints in our books (there is at least one nurse in the UK doing night rounds this week who has committed to these slots). Paul woke up at 2am realising that the reason Sam was so agitated was that he didn't need the ventilator any more. And so the next morning leapfrogged him from full ventilation over SiPAP and CPAP straight to the nasal prongs. The nurses couldn't believe he was doing that but the decision has been fully vindicated over the past day and a half. With our state of mind wholly correlated with that of our son's condition we are still floating along on this wave of good news but by now hardened enough to know not to relax. Please pray against another infection.

The search for veins is again becoming problematic. Sam's arms and legs are bruised and pockmarked battlezones and still very puffy with the oedema. He would fit right in at the micro Sumo wrestling championships. The nurses had to place a second line in his head after the first disintegrated yesterday. Thankfully they managed to get another one into his arm tonight in addition to the headline.

6 Sept - Off the ventilator!

Mich arrived in NICU this morning to find Sammy off the ventilator on a tiny nasal respirator - forget progressive steps via CPAP! Totally different picture from midnight last night when I was thinking he'd be kept alive by a machine in a drugged stupor for the rest of his life. I'll wait until this afternoon before I dare to go and see it for myself.

Please pray that his sats will remain sufficiently high for him to remain at this level of semi-independent breathing.

5 Sept - 3 weeks old: seeing, holding, haemorrhaging, believing

Sam's spot in NICU at night

Sammy is three weeks old today!

In premature celebration of this milestone I got a call yesterday from Bernadette in NICU telling me to come with a camera as Mich was holding Sam. What! I raced the well worn track between home and hospital in record time to find the remarkable sight of Mich with Sam’s bed on her lap and him perched proudly on top, firmly connected to all his pipes. The sight was doubly good in that he had been moved from the ventilator to CPAP. Time stood still in the NICU for a precious twenty minutes as we sat there with him. Then reality broke in on our elation as he began to desaturate. And soon we were back into full resuscitation mode with four medical staff ambubagging him back to life and back to full ventilation while we stood at a distance watching red flashing monitors . A microcosm half hour of what life has been like for the past month.

Today he opened his eyes for the first time. Sadly it was to eyeball his doc but I guess he is keeping him alive so he deserves it. He has been very restless today so he got his first taste of Morphine. Paul had to resort to putting a line in the side of his head with the last few veins in his legs and arms having disintegrated - I imagine I would be a bit unhappy with that too. The opiate totally zonks him out with little movement and very few self-initiated breaths. This is balanced by the resumption of feeding him Mich’s expressed breastmilk (lovingly pumped every three hours throughout the day and night) which his gut appears to be accepting.

A further major disappointment today was watching a brain scan reveal a grade 1 haemorrhage in his right ventricle. Paul, as ever, remained upbeat and explained that this would probably have happened much earlier and was only now showing up because it was healing…and that it was only likely to reduce his IQ from 145 to about 130. So in a way we are grateful that it is only a grade 1 (grade 4 is the worst) bleed and that there is no evidence of hydrocephalus or blocked ventricles, but the brain remains the key organ in the whole equation and for everyone is the most complex to understand. A quick Google search revealed something which helped us http://news.bbc.co.uk/2/hi/health/medical_notes/a-b/1746704.stm

Paul remains most concerned about the lungs and his seeming reluctance to want to breathe on his own in the wake of getting over the recent infection. So more shots of dexamethasone (a steroid to kickstart the lungs) and powerful prayers is the order of the day (and night).

I know there are so many of you out there praying and willing our little man along and at the risk of repeating myself I’ll say again on my and Mich’s behalf that we are indebted to you for the blessing of three weeks with our boy and sustaining us to keep at it. In gratitude I’ve created this weblog for Sam where I hope to provide more frequent updates than the mails.

The mails will continue too at significant points which, right now, are coming thick and fast.

With love

Terence

3 Sep 2006 - A battle won

On Wednesday night our little man was hit by a really bad infection which caused his stomach to blow up like a balloon. This in turn impeded his breathing resulting in a big desaturation in his oxygen levels and us coming in on Thursday morning to find an ashen baby with a hugely distended tummy in need of resuscitation. Up to then his previous two weeks of life had been relatively calm and, apart from a minor infection the week before, there was much to indicate that he was making good progress. So seeing him in this state rocked us to the core and a chat with our paediatrician (Paul) made it quite clear that his life was in the balance.

Suddenly we were taking big steps backward. Having coped valiantly on the CPAP (continuous positive airway pressure) for four days up to that point Sam had to return to full blown ventilation. Paul upped his antibiotics from one to four – the big guns as he called them. The precious drops of breastmilk that were going in had to be stopped, sedatives were restarted, another transfusion of packed blood cells and then praying that his gut did not start to die (necrotise) and perforate which would be very bad news. A thick dirty yellow paste was constantly emerging from the pipe in his throat that led to his gut. The C-Reactive Protein (CRP) level, one of the measures of infection levels was at 70 (7x the norm) and his platelet count was right down. His whole body starting swelling up. All we could do was wait and pray.

Friday and Saturday were much the same with at least no further regression but still no clear sign of the infection abating with CRP more than doubling to 150. It was a bit scary when we heard that. Thankfully his vital signs (oxygen levels, blood pressure, heart rate) had stabilised and the ventilator was doing all of his breathing for him allowing him to focus his energies on fighting the infection. The paediatric surgeon visited twice over the two days to assess his condition and whether it would be necessary to operate on his gut. Yesterday afternoon he decided it would not be as Sam had been pooing for Cape Town the night before and throughout the day which meant that his gut was still intact. Paul’s assessment yesterday was that little Sam was in the middle of the woods but at least he had an axe and was using it.

Today (Sunday) finally Sam seems to have won the 3 day battle with his CRP levels halved to 70 and platelet count up again. He still looks pretty awful, his arms and legs are riddled with holes and bruises where the venus lines have gone in and his belly still looks like a sunburnt Blue-Bulls supporter’s but we are overjoyed to still have him. Infections like this hit one unawares and are something that all the staff continually warn us of but it’s impossible to convey the pain as a parent to watch your precious child’s life sinking away then sitting on the brink, not knowing whether the drugs that are slamming into his tiny body are going to work.

But we rely not on medicine alone. We know that people (I’ve realised thousands of individuals) across the world have been praying for little Sam and we are again so thankful that his Creator holds him in his hands. We watch in awe as prayer networks are set up here and in the UK and complete strangers meet us at the hospital and tell us how much they have been thinking of and praying for us.

For those who do pray we ask you to lift up:

• Paul, on whom we rely for medical decisions. It’s astounding how hard this man works, his

dedication to Sam and the honesty and care with which he deals with us. The nurses who attend to Sam for 12 hours at a stretch surviving on coffee and love for these tiny babies

• Matt who is starting to become pretty restless at night

• Mich and me. We’re still looking at being at least another 6 weeks in NICU and Paul has made it quite clear that once Sam is released that he can only be exposed to people on a very limited basis for the following 9 months unless we want to see him back in hospital. We have to do a CPR course prior to his release. A long hard road lies ahead and we cannot manage it in our own strength. I’m also involved in running two organisations so need energy for the extra hours needed to keep all the balls in the air and spend enough time supporting my wife and sons.

For Sam, please pray:

• Against infection. We’ve seen what it can do now and are exhausted by the prospect of having to go through this many more times.

• That tomorrow he can be weaned off the ventilator onto CPAP again.

• That feeding can commence again to keep the stomach active once the current infection has died down sufficiently.
• For veins - unfortunately the veins in one so small disintegrate pretty rapidly so Paul is continually having to find new ones for the lines that provide intravenous food, drugs and blood products. This again highlights the need to move as rapidly as possible onto stomach feeding as much of the food and drugs can then be administered that way.

• For his brain to be shielded from haemorraging

• Mostly though that little Sam will feel protected and comforted. He’s been so distressed for the past three days, crying away silently with no air passing his larynx and his tears remain behind his fused eyelids. (We’d love to be the first people he sees when he eventually opens his eyes). It’s difficult to know how to comfort him – so mostly we rest a hand on his head and read to him. We’ve finished two books so far, so if nothing else, by the time he leaves the NICU he will have an encyclopaedic knowledge of Narnia.

Sam's ventilator

1Sept 2006 - A good week and a really bad day

Mich and I have spent the day in NICU today with our little 2 week-old boy who started desaturating (not oxygenating his blood) badly last night. Having left him looking okay at 23h00 we came in this morning to find an ashen-coloured baby with another infection of his gut –a massive one compared to last week’s that has moved to the rest of his body and is causing his tummy to blow up and squash his lungs resulting in an inability to breath properly. So unfortunately he’s back onto the ventilator and has been hit with four antibiotics, each one trying to smash what could be causing this infection. By midnight we’ll have a better idea if any of the drugs have worked and by tomorrow we’ll know either way which way he is going and hopefully the lab will be able to identify the bug. If the infection does not clear the risk increases that his gut will start to die (necrotising enterocolitis) and perforate which is very bad news. Please pray that God will heal this infection and for Paul, Bernadette, Alison, Tracey, Imelda and Ursula who are his loving medical staff (supported by a whole bunch of others).

As an encouragement to you who we know are praying, 100% of last week’s specific prayer requests were answered. We’re so grateful that:

- The tummy infection cleared in a day

- He was off the ventilator and onto CPAP (nasal positive pressure) for five days before this infection hit (this was a huge leap forward)

- He came off the sedation, the blood pressure drug, and one of two prophylactic antibiotics he was on

- He was taking 1.5ml of Mich’s breastmilk an hour yesterday (another big step)

- The sore on his neck is long gone

- Mich’s uterine infection has cleared up and the milk continues to flow steadily into the NICU freezer

- Matt was fully healed of his tummy bug in two days.

This morning though the paed’s sobering words were that with today’s quadrupling of the antibiotics we must quadruple our prayers! We left his rooms under no illusions that our son is not fighting for his life (and certainly will not be for the last time if he makes it through this one). Every hour and day is precious.

We trust in and place our hope is a God who understands every part of us, who heals, who loves, who creates, who breaks into the physical world in miraculous ways and who has a plan for us all.

With love and (relative) peace

Terence

24 Aug 2006 - 9 days old

Dear friends and family

Sam is now 9 days old and doing OK considering what he’s going through.

Tuesday was his best day so far in that he was transferred from the ventilator to a Continuous Positive Airway Pressure (CPAP) machine and was taken off two of the drugs that sedate and maintain his blood pressure (Dormicum and Dopamine respectively). He remained on the CPAP for 24 hours but then started to get tired so had to return to the ventilator. Getting the lungs working and off the ventilator is always a big hurdle for these little ones, but crucial as the ventilator is very intrusive and can damage the underdeveloped lungs. The CPAP simply provides air to the nasal passages and he does the rest so we are really praying for a rapid return to that (and then to minimal assistance). He also continues to fight the ventilator and is generally going through a lot of discomfort so had to go back onto the sedative. I could only bear to be with him for twenty minutes last night as he struggled away against the pipes and bandages.

A further major disappointment yesterday was the news that he has a gut infection - enterocolitis. While not unexpected during this second week, it means another week long course of antibiotics and a further delay in getting his gut processing. It’s crucial to get his stomach working as this means he can be fed the breast milk that Michy has been so painstakingly pumping - breastmilk is one of the most powerful immune system boosters. It also will mean that many of the lines going into him can be removed and the drugs administered directly into his stomach. As the number of lines is reduced so the risk of infection decreases. Today he seemed pretty stable, was breathing well with very little help from the machine and had passed three meconium stools. Thankfully the nice nurses insist on changing those nappies!

The physical and emotional rollercoaster that the nurses, doctors and internet keep talking about has begun. Quite often I find myself thinking about and feeling sorry for that couple who have that premature baby and then I realise it’s us.

Mich and I have been overwhelmed by the flood of support we have received in the past weeks. I started trying to respond to the wave of emails but gave up after about forty so please forgive me if I am unable to respond to yours other than via these emails. There have been so many gestures of love. One of our friends has visited Sam (or rather looked at him through two sets of double glass windows at where she knows he is lying) every day except one so far. Another couple arrived to look after Matt on Saturday night, gave us an envelope chock full of money and then directed us to one of Cape Town’s best restaurants. Family have stepped in at a moment’s notice. There have been offers to clean our house, to share daycare, to pay our hospital bills. We have a fridge overflowing with cooked meals! Wonderful stories of hope. Sustained prayers. The list continues…To you all we owe much and hope and pray that our son’s life will suffice as a perpetual expression of our gratitude.

Our lives are far from normal at the moment and we are being as realistic as we can in trying to find a workable balance this week after the debilitating trauma of last week. Matt seems to be handling all the emotion well though physically, in sympathy with his brother, he was hit by a tummy bug yesterday.

Please continue to pray for Sam. For healing of the infection in his gut, for his gut to strengthen and start processing milk, for his lungs to strengthen to allow him to breath unassisted, for healing to a niggling open sore on his neck, that he would accept the machines and pipes in his body without too much sedation and for peace in his little mind and soul.

Please pray for peace for us too. Physical healing for Mich who has a pregnancy-related infection and is on antibiotics, her continued success with breastpumping and milk let down and lots of rest. For me as I get back into work. For us both as we continue to grieve not having the joy of a “normal” baby. Healing for Matt’s tummy and that he will continue to cope with the turmoil of playing second fiddle to a very demanding little boet.

We’ll do our best try to keep you informed of significant events as they unfold. Thank you for your continued support and prayers.

With love

Terence

15 Aug 2006 - This precious gift of life - Samuel David Berry

To our dear family and friends

It is with a mixture of emotions that Mich, Matt and I want to let you know that we have a little boy and brother. Mich had been battling with the onset of pre-term contractions since early last week and managed to keep him in up to the critical point of 26 weeks but on Tuesday morning at 3h18 little Sam decided his time had come. There is no doubt that he has his mother’s exquisite looks and, weighing in at 860 grams, his father’s sinewy frame.

Most of you will realise that 26 weeks is very early for a baby to be out of the womb and so for those unfamiliar with the land of premature babies I need to explain some of what happened so that you understand where we are at the moment and will be for the next while. My apologies too for the delay in getting this email out but until now we have mostly felt like just curling up into a little ball.

On Monday night with the contractions strengthening, our gynae had put Mich onto a drip and been planning to keep a close eye on things with a view to doing a caesarean section later this week at the earliest. So our little man’s arrival took us all by complete surprise resulting in a very distressing emergency situation for Mich and me in the early hours of the morning. One minute we were sitting exhausted in darkness with Mich fighting her uterus, the next I had a midwife screaming orders at me to turn on lights, switch on the Entonox gas and run for help. However, before any of that could happen our precious little son landed on the bed fighting furiously to get out of his sac. I think this was almost as much a shock for the midwife as for us but her training kicked in as she instinctively cut open the sac, clamped and cut his cord and then raced down the corridor to the Neo-natal ICU with me trying to calm Michy who was pretty frantic by then. The only consoling moment was as she cut open the bag he gave a little squawk to let us know he was alive. I break down every time I think of or relate this and have had a number of people ask me if I’m still there when talking on the phone, so I hope you will forgive me writing about it instead.

Physically Michy is fine and was safely tucked up in bed at home last night for the first time in ten days. Emotionally we are both still battling as we recover from a week of being on the edge of our son’s life inside the womb (a delivery any sooner than Monday would have been a late miscarriage) and the most utterly traumatic experience we hope ever to face as he exited. We have never cried so much as over the last three days as we process an array of emotions ranging from overwhelming relief and gratitude that he is still alive to guilt, sadness, frustration and anger that our son has to start life in this terrible way. Dealing with this is compounded by the fact that we are unable to hold him and have not yet properly seen his face which is covered in pipes and bandages. All we can do is touch his tiny hands or feet. Yesterday we started reading him “The Wind in the Willows” so that at least he hears some familiar voices for part of the day. Our heads are starting to come to terms with what has happened and the fact that we will be spending at least two months with him in ICU. Our hearts are quite far behind.

We’re so thankful that he is alive. He is the smallest person we have ever seen and each time we see him we are amazed at his resilience and grateful for every new day of his life. Basically he has been transferred from one very comfortable dark womb with one mother and one life cord to another, noisy and brightly lit, with a respirator, constant sedation, a cocktail of four drips keeping him alive and four surrogate mothers (the incredible nurses in the Neo-natal ICU). I’m constantly amazed at the care and love that these total strangers show to these precious little ones. Apart from the fact that he has lived for three days we have been greatly encouraged by:

- a brain scan yesterday which showed no haemorrhaging which is common in pre-term vaginal delivery, hence the original Caesar plan

- every organ intact

- his lungs starting to work a bit for themselves

- his first successful blood transfusion yesterday - his little body only has around 60ml of blood in it

- his arterial canal closing without the need for further drugs or an operation

Many answers to many prayers.

The doctors and nurses are very pleased with his progress but despite all the encouraging stories of other prem babies surviving (which do give us much hope) we are under no illusions that he is a healthy, happy baby. We would so appreciate your prayers for a whole bunch of things but right now specifically for:

- no major infections (this is by far the biggest risk at this stage)

- his kidneys to reach full functionality

- no haemorrhaging in his brain

- his gut to accept the breast milk Mich is getting out

- his eyes to continue developing healthily – the eyelids are still fused tight shut

- and especially Mich as she starts with the breastpump every 4 hours

I would be grateful too if you could lift up our other son Matt (2 and a bit years old) who has been an absolute trooper through all of this and told his baby brother his name for the first time yesterday. He has totally charmed the ICU staff and thoroughly enjoyed quite a bit of time staying with Nanny and Pompa (my parents) over the past week. Thankfully we started reading the new baby books to him early on during the pregnancy and he seems to be coming to terms with the fact that his baby brother won’t be coming home as soon as the library books would have him believe. Tonight the three of us are sleeping under the same roof for the first time in ten days which will help give him some much needed stability.

From today we begin trying to find the balance between visiting our little fella in hospital as much as possible, my work and caring for Matt. We’re not quite clear how we’re going to manage this and would appreciate your prayers for strength over his next two months in ICU and then beyond as we enter the “normal” stresses of having what would have been a full term baby in mid-November.

Through all of this we are so grateful to God for our two beautiful sons. We know that He has a plan for our family and trust Him with Sam’s life and continued development.

Thank you to you all for the constant stream of messages, gifts, visits and practical offers of help. We have felt quite overwhelmed by the loving community of which we are so privileged to be a part. We know that there have been hundreds of prayers offered up for us over the last while from you and complete strangers – thank you all for your support in getting us this far.

Hoping and trusting that with each passing day our little guy gets bigger and healthier and our strength to deal with his journey keeps pace.

With all our love

Terence