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