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

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!