With thanks

Babies that leave the Neo-Natal ICU at Vincent Pallotti (and those that don't) leave the nurses, doctors and cleaning staff a photo of themselves and a note of gratitude on the wall. This is Sammy's picture collage of the year since having first met this wonderful team of people...

A year and a day

Nothing much happens on time when you live with two little fellows unable to dress themselves.

We suspect we are not alone in discovering this. So it is no surprise that this mail arrives a little past its due date and I’m sure you will extend the sympathy to forgive me some of the silence of the past months. Samuel “Smiler” Berry completed his first concerted A to B crawl two days ago, blissfully unaware that this was the perfect birthday gift for his parents. We did not celebrate his birthday yesterday. The memory of that day brings too much pain. What we celebrated, and celebrate daily, is life. We feel time healing us of what was ripped out of his start to life. We are still brought sobbing to our knees recalling that day almost a year ago when our doctor gently suggested that we prepare ourselves for our precious child dying. Up to then his short life had been a daze of bleeping life support machines, tiny needles and lines lived out in the unreality of a hospital NICU. In that instant we grasped how fragile life is. The days and nights that we had spent talking to a baby we had never held rewound and played over and over in our heads. The books that we had read, the prayers cried out, the tears shed. In that moment the gift of his life, however short, was a reality that nothing could take away. The smallest things remind me of this still as a number of friends and work colleagues will testify. Awkward silences as they stare at a father rendered speechless, the tears rolling down his face.

The tears flow now as I write for our two sets of friends who are grappling with situations no parent ever dreams possible. A three-year-old son recently diagnosed with leukemia about to start chemotherapy and the future of an unborn child whose heart has a double-inlet left ventricle and will need open heart surgery in the first week after his birth and two further operations within four years. We cry out to God with them. We hope our story offers them hope at a time when they find themselves unable to pull themselves off rock-bottom, miracles in the sterile face of endless tests, informed guesses and brutal medicines and honesty in our inadequacy to even try to come to terms with the horror of what they are going through.

But we do know something of the good that these precious families are experiencing in the midst of all this. This blog makes a poor attempt to catalogue some of the kindnesses we have known in the past year. We are still visited by nurses from the NICU (still, after three months with us in their hair everyday in the NICU!). We got supper every day for 90 days. A worldwide praying community has left its mark on us and our circle of influence. Our eldest son, Matthew, has emerged remarkably unscathed too from this time. We have a medical aid that asks no questions and just keeps on paying – massive up for Discovery Health and the friends I have made on their customer support hotline! Sammy weighed in yesterday at 9.5kilograms (19lbs) – more than 10 times his birth weight! He has survived two colds in his first winter. There is so much that we give thanks for. We know that there are many of you who have never met us - you find us in the street and at shopping checkouts or come over to us after a church service. You comment randomly and encouragingly on the blog. We have been deeply touched by this circle of support ranging from English mates mothers’ bridge clubs to neighbours offering to sell their houses to cover our medical bills! Be assured over the years that young Samuel will not be allowed to forget his supporters!

At this time we would be so grateful if you could pray for and lift up our friends David & Danielle their little ones James & Charis and Marion & Rowan and their daughter Tamsyn & her unborn brother. They can’t make it through this time on their own.

As ever this comes with our love, deep appreciation and a slightly damper keyboard than normal

Terence, Michele, Matt and Sammy

Admittedly not our most attractive self-portrait!

9 months old and 7kgs today!

On his 9 month birthday Sammy unfortunately had to visit his almost forgotten doc. Not such a bad thing really in that his doc is a really good egg but unfortunately the visit was not a social one. He has picked up infections in both ears and a cough that is not getting any better. He stoically avoided a bout of brochitis that laid the rest of us low in the first wave of Cape winter lurgies but now seems to have finally sucumbed.

Interestingly Paul reckons he has had this ailment for a while but has been desensitised to pain to a large degree as a result of the intense sustained pain of his first three months in NICU. Not much fun having people stick needles into you every few hours without the comfort of your mommy's arms! Despite that disconcerting thought he is developing very well and smiling his little head off at anyone who gives him the time of day. He weighed in at 7kgs today!

Mich is still breastfeeding and was hoping to bring to an end the exhaustive element this adds to her busy days but today Paul suggested that she keep at it for a while yet given the antibody benefits of her amazing milk. So she has resigned herself to as many more months as she can manage... but we will be cracking a number of bottles of champagne when that bit of motherly sacrifice finally draws to an end! At elast we have taken the bold step of switching off his apnoea monitor which for 4 months has been waking us every night 3 or 4 times. It seems that it was more for our peace of mind than his survival (or a really cunning way that Sammy had worked out to use a bit of breath holding to get a cuddle!!)

Thanks so much if you are still reading this blog and particularly if you are still praying for our little man.

7 months, 5.9kgs, no more kitchen scales!

Fat boy continues to pile it on to the extent that we can no longer check his weight on the kitchen scale! The fat is good as we approach his first Cape Town winter. The respiratory syncytial virus (RSV) lurks.

Some recent photos that make us smile...

Matt digs his brother















The post-projectile vomit smile
















Dad's favourite people
















Every child is a miracle - this one a bit more explicitly so

5kgs barrier broken

Latest weigh in at 5.05 kilograms! A significant milestone.

A brain scan last week showed that the haemorrage he had in his first few days after birth has resolved. We'll only know in the years to come the impact of the bleed but for the moment it's encouraging that there is no scarring remaining in the brain cavity.

Pretty good news.

6 months old today

Sammy is 6 months old today. Everything is still going well. He is weathering the germs of society like a hardened trooper. We're enjoying the new found freedom of kicking around in public places together.

Quarantine lifted...

...along with the digital silence! In this game no news is always good news!

We met with the good doctor yesterday. He's very happy with Sammy's progress and the outlook is good.

The scale clocked 4.5kgs, the cocktail of daily drugs and supplements has been reduced to only one drug (Singulair) to help him breathe and THE QUARANTINE HAS BEEN RELAXED. Hurray for doctor Paul! We won't be handing him over for sloppy wet kisses just yet and babysitters still need to know infant CPR but we're heading out to rediscover society!

I suspect we'll be a tad on the protective side for a while but there is great joy and relief in the Berry clan! Winter and its associated lurgies is the next big hurdle but for the time being we thrill in being together and socially mobile as a family.

Mich is still weathering the wheat/gluten/dairy/chocolate/legume-free diet to combat Sam’s prior intolerance to her milk but it's paying massive dividends for the boy's sleep and growth – not to mention all those lovely antibodies in every mil.

Terence