Friday night TV-Dinner

It's 10.30pm and Samuel is sleeping peacefully in his cot next to me while I update his blog and enjoy the Auckland skyline by night. Shirley spent last night up here with him and now it's my turn for Friday/Saturday nights before I head to Laos on Sunday and Shirley takes up residence for the week.

You'll recall that yesterday Samuel's left kidney stopped draining after the catheter was removed. He was a little restless through the night as his kidney inflated with urine and by the morning the left side of his abdomen was noticeably expanded and firmer. His level of discomfort was clearly increasing so we were relieved when Samuel's surgeon arrived in his room mid-morning to re-insert the catheter which instantly drained off 120mls of urine and reduced his abdomen back to normal size. The catheter has been draining well all day and Samuel has been very relaxed and contented. We were so relieved that he didnt' have to go back down to theatreand the problem was easily resolved by Samuel's surgeon Mr Upadhyay who is very familiar with Samuel's plumbing after operating on him 7 times already.

This evening we had our first Friday night TV-dinner with all 3 children, fish and chips in front of a disney dvd on the TV in Samuel's room. We're really enjoying being here in Starship and having a separate room where we can hang out as a family, a corridor outside that we can kick a football around with the girls, books and toys in the children's room, and peace without constant alarms from monitors.

I'm sigining off now, probably for the weekend assuming there's no further news. Good night friends and thanks for your prayers this week.

Francis

A New Home

Today was another small miracle in Samuel's growing list of miracles - leaving Newborn Intensive Care Unit (NICU) which has been his home for the first 8 weeks of his life and moving next-door to the Paediatric Gastric ward in the well renowned national Children's hospital called Starship. We are so grateful for the wonderful care that Samuel (and us) have received in NICU and we are indebted to the nurses and doctors of NICU who did all they could to give Samuel a fighting chance at life. NICU and the staff became so familiar after spending most of the past 55 days up there and so it was with mixed feelings that we wheeled Samuel out and off to his new home early this afternoon. We will be sure to return and update the NICU team on his progress over the coming weeks, and hope too that they will pay us a visit when they're over our way as well as keep following his blog.

We arrived in Ward 26b of Starship hospital and were shown to our single room overlooking the Auckland city skyline and harbour, with a front row seat of the helipad on top of the carpark where we can watch the rescue helicopters landing and taking off day and night. Samuel has a cot and there is a single bed next to it for Shirley or I to sleep next to Samuel. Now that Samuel no longer has constant nurse supervision, we will take turns sleeping in his room so that one of us is always with him. That will pose some logistical challenges as we try and keep the girls in a routine, but we feel it's important to always have someone with him and it's lovely to have our own space with a harbour view, tv/dvd movies, and children's books/toys for the girls when they come up.

Samuel is looking great without any oxygen support tubes and now with only the nasal/gastric tube left on his face. He's had two sets of dye tests of his left kidney to see if the urine is draining as expected, which it seems to be. The catheter from his left kidney was removed this afternoon as it seemed the urine was draining out the ureterostomy and around the cathether instead of through it, however, since being removed the ureterostomy has stopped draining, raising the possiblity that the hole has closed over. That may require another surgery tomorrow morning to reopen the hole by inserting a stent if urine doesn't start draining by then.

I head back to Laos next week for a quick 9-day visit to catch up with World Concern staff in Vientiane and our project sites in the south. It's been 3 months since my last trip back and I'm looking forward to seeing my colleagues and reconnecting with our good friends in Vientiane. As Shirley will be based up at the hospital for most of the time I'm away (my mum and dad will be looking after the girls here at home), our blogging may become slightly irregular but we'll be sure to update you on any significant developments. Thanks for praying for strength and peace for Shirley while I am away from Aug 2 - 11.

Thanks for being so interested in Samuel during his time in NICU, we hope you can keep praying and following his progress as he embarks on the next phase of his journey that brings him one step closer to coming home to his family.

Francis

First set of threads

Today Samuel lost another tube/bag when the catheter in the vesicostomy was removed once it became apparent that most of the urine from the right kidney was draining directly out the vesicostomy and around, rather than into, the catheter. The uretorostomy in the left kidney is being watched to see if urine is draining directly around the drain tube and, if so, that too will be removed in the coming week which will just leave the one bag collecting liquid from the stoma. He is doing so well on low-flow oxygen with very little oxygen requirement that he may also be off oxygen support altogether by the time he goes to Starship, we're looking forward to tube-free cheeks!

But the big news is that we dressed Samuel for the first time today, in a very fetching outfit. So he's ready to impress the ladies in Starship with his sharp dress sense.

The tour of Starship was short and informative and not the huge shock we had anticipated. It definitely is noisier and busy, but he will have his own room with his cot, plus a bed for one of us to sleep beside him. Most importantly he will have access to the great surgical, gastro and renal teams that already know Sam very well. Samuel is already well known to the nursing team as well who have been expecting him for weeks but as you know his transfer was delayed a number of times when it wasn't at all clear whether he would ever improve sufficiently to move to Starship and continue his treatment. So we're thrilled that he is now well enough to move across and start the next chapter in his treatment, and move one step closer to the goal of getting him home. We know it will take a bit of getting used to after coming up 8 weeks in the peaceful environment of intensive care, but the fact it signifies an important step forward in Samuel's development by far overshadows any minor adjustments on our part. We look forward to introducing you to Samuel's new room and home in Ward 26b of Starship hospital.

Immunisation Day

Today Samuel had the standard 6 week immunisations - which he'd missed in his 6th week due to surgery, but he was well enough to have them today. This is a pre-requisite for him moving over to Starship - the children's hospital connected to Auckland City Hospital. He will be much more exposed to illnesses being in an open ward.

Today his surgical drain from his right kidney and fluid collecting bag were removed, so he has one less bag. His morphine was lowered again so he may hopefully be weaned off it fully tomorrow. All his various blood tests came back with mostly normal readings, which we're really pleased about. His calcium levels which were dangerously high on Friday (affects central nervous system) have reduced significantly since they made adjustments to his 'food' over the weekend, so they will be watching this closely along with his sodium levels. His liver tests have all come back showing good readings, since stopping any paracetemol infusions. So we are really pleased to see him responding so well to the changes. One of his lovely doctors made the comment today when speaking about one of his drug changes with the nurse, 'but this is Sam, he'll do the opposite of what we expect anyway!'. He really is a special wee boy who has taken a lot to figure out, but the team at NICU have been superb in working with him and trying everything they could to get him to this point.

Tomorrow Francis & I have a tour of 26B - the ward in Starship that Sam/we will be living in for the next amount of unknown weeks/months. It has been arranged to help prepare us for our next phase of life - we have been warned by many of the staff of the shock/adjustment it will be for us, especially after being cocooned in NICU for so long, where Sam has largely had one-on-one care and it is quiet and peaceful....so we will let you know tomorrow night if the shock is as bad as people have hinted at!

Sam still requires a little oxygen assistance, but they are going to try and wean him right down tomorrow and see how he goes. Otherwise, it's just letting him rest and waiting for the all clear from Starship.

Off to bed to rest before what could be our last full day in NICU - Wow, can't believe it's nearly here.... amazing.

with love, Shirl

Mud and cuddles

We've all had a great weekend, especially Samuel. The sun shone bright in the middle of winter and the girls covered themselves in muddy sand on Saturday and today they played with friends at the park on the beach.

While Samuel didn't get to enjoy the fresh air, he is doing really well on low-flow oxygen and mum and dad both enjoyed long cuddles with our boy awake and alert. The doctors are pleased with how quickly his breathing ability has recovered from the operation and he's had the most settled weekend so far with long periods of sleep and coping much better when the nurses need to move him.

The plan for tomorrow is that Samuel will have the normal 6-week immunisations and no doubt there will be the regular visits from the various surgical/specialist teams wanting to check on his progress since the operation and plan the next steps. We don't have any further medical reports to share but wanted you to know (and see for yourselves) that Samuel is doing well and we're looking forward to a week without major surgery.

Thanks for remembering Samuel over these past few weeks as he's been in and out of surgery, we are sure that the hundreds of prayers prayed from across 44 countries have all played a part in the success of the surgeries and post-op recovery.

End of Week 7

Today I was in with Sam and Francis was home with Jasmine. Normally the day after surgery is very busy, but today seemed busier than normal. I arrived just as the ward round arrived - 6 people of various specialties going over Samuel's notes, with the nurse updating them on his comfort levels and most recent blood results. They were very concerned about his liver function and also the levels of calcium in his blood. They had lengthy discussions about the best way to counter these problems and it was agreed to alter his individualised nutrition and to order an ultrasound of his liver and take further bloods for more specific tests. They left and 10 mins later in walked the renal team, who then went over similar discussions, then came the radiologist and sonographer to do Sam's ultrasound which took about 20 mins. They left as the gastro team arrived - again to discuss his overall care and give their input as to his oral feeds, so he has now started breast milk again at 1ml every 2 hours, plus some medicine which is to help push this through his stomach. Then the surgical team showed up to check their handywork of yesterday and his other wounds. Somewhere amongst this the nurse managed to take him off ventilation and put him back on to CPAP. He was only on this for a couple of hours and was coping so well that they then put him on to low-flow oxygen.

Sam was surprisingly relaxed and settled inspite of being poked and prodded numerous times, covered in jelly for the ultrasound and having bloods taken. He became unsettled as I was about to leave, so I got to hold him for about 20 mins and he did settle a little.

I found it a hard day - post-op is always hard for me. Although the surgery yesterday was a good result and he coped well with the surgery, the fragile state of his major organs is a constant concern. And there just doesn't seem to be space to breath and celebrate any good steps as there is always another ongoing serious concern that they are addressing. We have always known it will be tough, and at the 7 week mark it is just plain tough. I feel relieved when he survives another operation, but still sad for him as the reality is that each surgery is not to correct a problem (his heart operation was the only op that was), but simply to manage his condition better. Today the tears flowed as I sat in the background and listened to the many discussions and as I looked at our darling with wires and bags hanging out and off him. I feel so helpless, yet am so glad to be with him as when Sam gets upset he responds to our voices and touch. I guess I want to share this as I am muddling through and I have my down days and today has been one of them. So I am still peaceful and sad and frustrated and hopeful - it can all co-exist and God knows that and sustains us.

Actually there are times I know real joy - that's when I just savour the moment and am holding Sam or washing him or just gazing at him....

So today I learned afresh about my inability to be strong or hopeful or joyful on my own.... I leave you with some great verses my friend reminded me of (thanks Carol!). “At that time we were completely overwhelmed, the burden was more than we could bear, in fact we told ourselves that this was the end. Yet we believe now that we had this experience of coming to the end of our tether that we might learn to trust, not in ourselves, but in God who can raise the dead” (2 Corinthians 1:8-9 PH).

Sleep well

X Shirley

Post-op update

Each time we head to surgery, we have the same pre-op questionnaire to answer.... re: any tattoos, body piercings, jewellery etc... that Samuel may have (clearly a generic form not aimed at newborns!). Well the first photo today shows Samuel proudly wearing his first jewllery - a tiki (Maori carving) from his little cousin in Rotorua - thanks Ana & Greg - we love it on our little warrior!

Samuel went in for surgery around 2.30 today and was in post-op again by 5.30, where we met him and spoke with the surgeon. The surgeon found that Sam's right uretor was in good condition but with a blockage, which they managed to solve by inserting a stent from his kidney through his uretor and into his bladder, so they didn't need to make a urine drain straight from his uretor to the surface as they have for the left kidney (i.e. a ureterostomy). So his right kidney is now draining straight into his bladder, which is draining via a catheter which has been inserted into his vesicostomy (incision directly into his bladder just above his groin). This is a better result than we had hoped for, as it means he doesn't have another external drain/bag to manage. He still has a temporary drain from this side, into a bag, but it will come out in the next couple of days, as it is just draining fluids from the surgical site.

We got him back to his room around 6pm and he was settled and calm when we left him around 7pm. For tonight he is still fully ventilated (will reduce his oxygen slowly to try and avoid a lung collapse post surgery) and sedated on morphine.

I don't think I will ever get used to 'surgery days', but we got through it, albeit with the usual tears and gut wrenching feelings. It is a lovely feeling to see Samuel post-op already starting to respond with his little arms flailing around.

His liver tests have started to show some unusual enzyme counts, so they have stopped all paracetemol infusions and will do further tests to determine what is going on here. We have always known that being on TPN (his synthetic food) would be damaging to his liver, so we are hoping and praying that Samuel can recover well from this operation and gets stronger, so he is stronger for his ongoing challenges.

So we're relieved that today is over and hoping that tomorrow when I go in he will be doing well. It looks like Francis will stay at home with Jasmine as he has work to do and she has as chesty cough that doesn't seem to be shifting.

'Thanks Lord for helping Sam cope with today. Thanks for the skill of the surgeons. Please give Sam good rest tonight and help his lungs to get stronger and him to recover from this surgery, put angels around his little cot and bring him comfort and peace as he rests'.

Arohanui

Shirley

Operation scheduled for tomorrow.

Samuel's had a good couple of days, with him being alert, awake and happy for up to 1.5 hours at a time, so we've had plenty of cuddles and cooing!

His 'quiet' week has changed somewhat, with him now scheduled to have an operation on his right kidney tomorrow at 1.30 pm. He needs to have the catheter removed from inside his kidney and will have a new drain (ureterostomy) brought up from his uretor to the surface of the skin. This surgery is like his last surgery - dependent on what the surgeons find in theatre, but the above is the current plan. Today he had a kidney ultrasound and the surgeons were pleased that his kidney operated on last week, and the diversion, is working as well as they'd hoped.

So we would value your prayers for Samuel again, as he faces his 8th operation, anaesthetic and intubation. He was looking so good today, breathing on low-flow (off for a little time too and breathing all by himself!), comfortable and responsive, sleeping tonight with no concept of what his body must endure again tomorrow.

Sadly Jasmine, his big sister has developed a cough, so she has not been able to visit and have cuddles with her little brother, but we hope and pray she gets over this soon and will be able to visit on Friday, as she's really sad she hasn't seen him for 3 days. She has found a book of poems she is desperate to bring in to read to him - very sweet. The girls, especially since they've been allowed to hold him, constantly talk about him and include him in their thinking and lives, which is very precious to us.

We will blog tomorrow night with a progress report post op. 'Please Lord be with Samuel and give him peace and physical strength to recover well from this next op we pray. We love him so much, our hearts ache that we can't take away his physical challenges, but we trust him in your hands - his maker, who knows and loves him with an immeasurable love'.

With love and immeasurable gratitude for your love and support. Shirl

De vieux amis et un nouvel ami (Old friends and a new friend)

It's Sunday evening and the end of the girls' two week holiday from school. They've had a fairly busy holiday mostly thanks to gymanstics classes, holiday program, and Uncles/Aunties taking them out swimming, roller-blading, their favourite sushi restaurant etc. We promised to take them to the movie Ice Age 3D during the holidays which we made time for on Saturday afternoon, and it was great to do something 'normal' together after 6 weeks of life revolving around the hospital. Then Saturday night Shirley and I attended an old friend's 40th birthday party which had a 'rock' theme, so out came the tatoo transfers and black t-shirts (as much 'dressing-up' as we felt able to cope with right now) and we enjoyed 5 hours of freedom from medical jargon, beeping monitors, elevators, and incessant hand-washing. Of course we love being with Samuel, but it was great for us to spend some time away from the hospital for a few hours and cathing up with friends from a bygone era, some of whom we last saw when spiked hair, leather jackets and white suits were not considered 'fancy-dress'.

On Friday night following his operation earlier that day, Samuel was put back onto CPAP breathing support after his oxygen requirements started to increase beyond what low-flow oxygen could provide. This trend continued throughout the day as he required more and more oxygen, so the medical staff ordered a chest x-ray which showed that the upper third of his right lung had collapsed, apparently not an uncommon occurence when coming off ventilation. So they are lying Samuel on his left-side to try to help the lung re-inflate, and today his oxygen requirements seem to have dropped again which we hope will continue overnight. The plan is for him to have a quiet surgery-free week this week to allow his body to recover from the last big operation before the next procedure is planned. The ureterostomy in his left kidney seems to be draining as it should and is no longer blood-stained now that the clot has been removed, and the team seem happy with his daily blood tests He remains on morphine infusion to keep him comfortable following the surgery and so we haven't seen him awake very much over the weekend, but he's being kept company by a new French friend courtesy of our good friends the Dufour family - who feel its necessary for us to be reminded of the embarrassing All-Black performance against the French rugby team last month.

We're not sure how much new information there will be on a daily basis so if Samuel remains stable as we are hoping then we'll just update the blog when we have some new information or if his condition changes.

Thanks for checking in when you can, we are humbled that so many people are following his progress so closely and we are sure that your prayers from wherever you are in the world, have not gone unheard.

Love from us all

Francis

4.5 hour operation

We are pleased to write that Samuel came through his kidney operation well today. He went in about 9.30am and the surgery was about 4.5 hours long. They removed a large clot from the centre of the left kidney and flushed it with a high pressure solution. The surgeon explained that the left kidney was in very bad shape, with very little meat and was floppy and thin and poorly formed. I won't go into great detail as it is very complex, but basically the tube between the kidney and the bladder (uretos) was obstructed by a membrane, so the surgeons cut out the membrane and re-joined the tube in an attempt to increase the flow of urine from the kidney down the uretos, which has been brought to the surface to drain into a bag rather than running into the bladder. Samuel returned from theatre back on low-flow oxygen but has since been put back onto CPAP (pressurzed oxygen) to provide extra breathing support as he was starting to struggle once the morphine kicked in. The plan is to monitor what happens from the drains running from the left kidney, before performing the next operation on the right kidney in a few weeks time. It was a long wait today but we're so pleased to see Samuel get through the operation and grateful for the hard work on the part of the surgical team who performed this intricate procedure on such a fragile kidney.

We look forward to updating you on his recovery tomorrow.

Francis and Shirley

SukSun WanGert (Happy Birthday in Lao!)

I took a break last night from blogging, to make sure Francis had a great birthday - he loved the fireworks, liveband and amazing food I'd arranged! Yeah, ok.... so he was kind of forgotten amidst the busyness of life, but he did get a pavlova with the promise of doing something fun at a later date. It was a busy and full house with my family and Francis' parents/bro here to enjoy a birthday roast thanks to Mum & my sis'n'law Kylie. Today Uncle Burp & Aunty Handstand (A.K.A. Selwyn & Kylie), Alison and Mum all left. Was so great to have time with them and it helped immensely over the school holidays to have the girls happy and entertained.

Today Samuel had a relatively quiet day. He was awake for most of the morning, just looking around and cooing and very settled. At about 12 we walked him down to radiology for his first C.T. scan. We were pleased that they had agreed to do the scan without putting him under a general anaesthetic, to save Samuel the stress of intubation. Samuel was very good and didn't wriggle and squiggle (which was the concern/need for anesthetic) and they got the required information.

The surgeon will operate on Samuel's left kidney tomorrow, based on the information gleaned from the CT scan, with the aim being to remove the blood clot from this kidney and see it reduced in size (the right kidney is in much better shape), as the clot is at great risk of infection. So we would value your prayers around 9.30am NZ time, as he is wheeled down ready for his 7th surgery. We hope and pray his body responds well to the intubation, anaesthetic and shock to his kidney as this invasive surgery takes place.

After his CT scan I had a lovely snooze in the lazyboy with Samuel wrapped in my arms for a good couple of hours, whilst Francis tuned out the beeps of monitors and worked at the nurses station on his laptop finishing his masters assignment. Samuel has finally taken to using a 'dummy' - that's 'kiwi' for pacifier. The nurses are keen to ensure he doesn't develop 'oral aversion', which is a reluctance to suck/feed due to only associating his mouth as a route for pain and tube installation. We've been trying to give him a few drops of milk orally and coaxing him to suck, and finally

today he slurped away like Maggie off the Simpsons which was very cute.

Today Samuels 'room mate' left NICU for home - was so lovely to see him head home with his Mum. Made us hopeful for this for us too - but for now he justs has to get past the hurdle of the surgery tomorrow.

Thanks so much ... again ...... for your love and prayers

Shirley

What a difference a week makes

Francis is frantically typing on his laptop behind me, trying to finish a masters paper, so I get the job of the Blog tonight.

I am writing from home, as today we moved back from NICU as Samuel is quite settled. It is lovely to be back amongst our stuff, having normal meals, doing the bed/bath routine with the girls.

Last night (after the blog entry) Samuel had a blood transfusion and today Samuel was weaned off his morphine, after the surgery of yesterday. He was extubated at 11.30am and has been coping on low-flow oxygen since. Mostly he had a very settled and uneventful day, dozing through his many visitors.

After the multi-specialist meeting this morning, the neo-natologist met with us to talk us through all that they had discussed about Samuels complex condition and options for treatment and his care. We talked through long-term options as this directly impacts decisions being made with his current day-to-day treatment. If Samuel is to live and thrive, he will need to have a multi-organ transplant and the impact of this would be huge for us as a family as well as Samuel. It is a complex issue that putting in a short blog would not do justice, but suffice to say that there are risks and costs on many different levels both physically for Samuel, financially and emotionally on us all. We agreed that we want to give Samuel every opportunity to fight on and receive treatment, knowing that it will be difficult and there is no certainty of success.

So we talked through step-by-step surgical interventions that Samuel would need to undertake, with the understanding and agreement that at every step we would stop and assess the impact on Samuel before we continued on, fully aware that at any point Samuel may not be able to continue. It was an open and frank discussion and we are so grateful for their honesty, insight and concern for Samuel.

With the above in mind, the surgeon would like to take a CT scan of Samuel's abdomen on Thursday (under general anaesthetic) to determine the best option for surgical intervention with his kidneys. Currently he has a catheter directly into each kidney, but it is of urgency to remove these (this was a temporary measure to relieve the pressure) as they are at great risk of infection and the underlying problem needs addressing. So he may have the surgery straight after this on Thursday whilst he is intubated, or possibly on Friday.

The deceptiveness of Samuel's illness is frustrating - when Samuel looks so well and has improved so much, yet internally he has so many problems and no easy solutions. Samuel has responded well to various interventions and surprised us all. At what point do medical interventions cease to be kind to Samuel? How will we know when Samuel has had enough? We have so many unanswered difficult questions which Francis & I agonise over. And there just are no easy answers, so we hope and pray that we will be guided by God, who has the big picture.

Shirl

Back to theatre

Samuel had his sixth surgical procedure this afternoon to repair the prolapsed bladder and inject dye into the kidneys to determine the path of urine flow and identify any blockages. We followed our usual route from NICU to the operating theatre in Starship hospital which we have come to know quite well. As always we were met by the cheerful theatre nurse Viv in Pre-op where final preparations are made before Samuel is wheeled through to theatre. 90 minutes later we received the call that he was out and on his way back to NICU.

The part of the bladder that had prolapsed had been pushed back in and a 16ml catheter inserted to see if urine would now drain from the bladder. The kidney dye and scan showed that Samuel has a blockage at the drainage point of the right kidney where urine flows into the uretos and down to the bladder. The left kidney contains a large blood clot which makes it difficult to identify the blockage which could be in the same place or at the bottom of the uretos where it meets the bladder. Mr Upadhyay, the operating surgeon, took time to talk through the procedure with us and explain what he found, as well as discuss further surgical options if we decide to go down that path. Tomorrow representatives from each of the specialist teams caring for Samuel - nephrology, urology, gastric, and neonatalogy, will meet together to discuss the findings from the procedure today and further options for Samuel's care.

Tonight they are hoping to return him back on to CPAP as he had to be re-intubated for the procedure today. He should be much more comfortable now that his bladder is where it should be and we are pleased to see that his creatinine has dropped to an all-time low of 33. Tomorrow's meeting will be significant in guiding the next steps and we would value your prayers to understand the medical options and discern the right way forward.

Face to Face

Today was special in that we were able to have a decent amount of time enjoying Samuel with his eyes open and alert, without his face being disguised by tubes. He remains on CPAP breathing support but is requiring very little oxygen and was able to be off CPAP for 15 - 20 minutes during his wash and bed change (see video clip). Being able to get face to face with my son was an intimate experience that has been a long time in coming.

Since the previous blog, Samuel's latest blood tests results came back showing that his creatinine had further lowered to around 64 and his haemoglobin remained stable within normal parameters at 120. His bladder is protruding further from the vesicostomy and is about the size of a golf ball. It is causing him discomfort at times and is not draining urine as was intended. The surgeons want to operate tomorrow afternoon to reverse the vesicostomy by reinserting the bladder and closing the hole, which is around a two hour procedure. In the morning they will inject dye into the kidneys to determine the flow of urine from the kidneys to the bladder and to identify any potential blockages. This is needed in order to help the surgeons consider where to go from here as the kidney drains are not a long-term solution.

Tomorrow there will be a multi-disciplinary meeting of all the specialists involved in Samuel's treatment to review his progress and consider how to move forward. While he is looking as well as he's ever looked, we are conscious that he still has serious complications that could see him deteriorate very quickly. It is also clear that any further surgical interventions will entail a high degree of risk and we will need to weigh the risks against the potential benefits for improving his condition. However, Samuel has proved this week that he's prepared to fight for his life, and as long as he's fighting, we'll be working with the medical team to give him as much support as possible.

We are mindful of the many hundreds who are following Samuel's progress from 40 countries and we just want to let you know how much we appreciate your concern and interest in his ongoing treatment and how we are coping as a family. We don't underestimate the power of prayer to move God's hand

and so we ask for your continued prayers as Samuel enters his 6th week of life with fresh challenges to overcome.

With love and appreciation.

Francis

The Rollercoaster continues

Samuel is 5 weeks old today. At the start of the week we didn't think that he would still be with us today .... he was so gravely ill .... and then he surprised us all and has gradually improved since Tuesday.

His distended abdomen has always been a serious problem, not just the damaged internal organs, but the continuing distention affecting his breathing as his lungs were squashed up by his diaphram. Now his kidneys are draining (albeit it directly into individual drains) his stomach is soft and has reduced significantly giving space for his lungs to better inflate. Yesterday the Drs felt that Samuel was ready to come off ventilation and on to 'low-flow' oxygen, but agreed to re-ventilate if he wasn't coping. You could tell Samuel was relieved to get the tube out of his throat and nose, as he had been irritated and trying to pull it out over night. He was on low-flow for 10 hours, but then started to tire and was put on CPAP to give more support to his lungs. His creatinine levels continue to fall, from a peak of 198 on Tuesday, down to 84 yesterday, with normal range being 20 - 60, so we wait for his blood results late morning to see if they've improved further. His haemoglobin levels have remained in the normal range since Wednesday and has not required any further blood transfusions, which confirms that he is no longer bleeding through his kidney. His vesicostomy (bladder drain) has prolapsed significantly, but this was not unexpected due to the size of his bladder. His morphine has been gradually reduced to enable his breathing to improve, which also means he is awake and alert for long periods. We have enjoyed more visual interaction with him as he is able to make eye contact with us and look around. Yesterday he had individual cuddles with Jas, Candace and Shirley! He has been re-started on breast milk 1ml

every 4 hours.

So the roller-coaster continues on. We didn't choose to get on this ride (I would have preferred the merry-go-round!) and we don't operate the controls to stop it and get off - at times I have thought I can't cope anymore but we don't have the choice to get off - we must finish the ride, and it will continue with the controls firmly in God's hands. The anxiety over the anticipation of the next downward loop at times can overwhelm me and find myself not enjoying the exhiliration of the top of the loop.... and I so don't want to miss out on the treasured moments of enjoying Samuel when he is well because I am guarding my heart from the heartache at the bottom. I have to discipline my mind to God's words of wisdom, 'don't worry about tomorrow, for today has enough concerns of its own'. We are learning to enjoy each hour, each day, as we are finding out that tomorrow will come with its own twists and turns whether we worry or not.... and I'm learning when I worry, I miss out on the joy of today.

Alison, another sister, arrived yesterday and it has been such a lovely distraction and motivator to have time with family. It is such an encouragement that they have come a long way to be with us. We have had 'normal' times of just yarning and laughing and existing outside this world of waiting for blood results and where words finish in 'ostomy'!.

We will try to spend more time with the girls this weekend, as Samuel is no longer as critical and time away from the hospital will be good for us too.

With love and appreciation for your love for Samuel.

Shirley

Sisterly Cuddles & Family Photo

Yesterday was a special day for us, as the girls got to hold their brother for the first time! You can see their love and joy so clearly in the pictures. We were also very blessed to have our good friend Jae come and do a family photo shoot in Samuel's room. These photos will be so dear to us in years to come and we are so grateful to have our first family portrait with Samuel.

Today Mum, Raewyn, Heather are flying up from the South Island and last night Selwyn & Kylie flew in from Perth. It will be lovely to have them here, for them to meet Samuel and to have their love and support.

Yesterday Samuels blood pressure had stabilised at a normal level, his left kidney continued to drain blood-stained urine, but Doctors think that the active bleeding may have stopped and the residual blood could be from the blood clot which is slowly dissolving. That could help explain why he has not needed any further blood transfusions in the last 48 hours. His most recent blood tests yesterday morning showed his creatinine had decreased to around 166, which, while still very high, shows a gradual improvement since the peak of 198 earlier this week. His morphine has been increased slightly overnight as he showed signs of increased discomfort since 5am, but overall he looks more settled and his skin colour is pinker and less mottled. His stomach still remains softer to touch and the kidney drains are continuing to see good amounts of urine drained out.

A friend reminded us of this verse in Jeremaiah.10:23 " I know ,O Lord, that the way of human beings is not in their control, that mortals as they walk cannot direct their steps". We are at peace that Samuel's future, whether measured in days, weeks or years, is completely in the Lord's hands. So we are just taking each day as it comes and waiting to see how the Lord directs which will be made clear to us one way or the other, through Samuel's response over the coming days to the surgical interventions he has already received.

Thank you for standing with us and continuing to remember Samuel in your prayers

The next 24 hours...

Today we met with the medical team who felt it was time to reflect on where we go from here, given Samuel's deteriorating condition. They have treated each problem as it arose but now it is getting to the point where further interventions would not change the likely outcome, which is bleak. They recommended that we should not subject Samuel to any further surgery as his fragile body has already been through enough and it's now time to see how Samuel will respond whilst maintaining the current course of treatment (ie, antibiotics, blood transfusions, ventilation and intravenous nutrition etc).

We agreed that, if over the next few days, Samuel either deteriorates further or fails to make a significant improvement in terms of the bleeding from his kidneys, his haemoglobin level, dependence on oxygen support and indicators of kidney function, then we would agree to discontinue his treatment and he would be offered palliative care to keep him comfortable until he goes Home. This is hard to put into words, but we are at peace with this decision. Samuel has surprised us with his tenacity and endurance when we only thought we may have him for a few hours. He has put up a good fight but there is a limit to which we can expect him to keep fighting, as his problems are compounded and his level of discomfort and dependency on support increases.

We'd appreciate your continued prayers that, if Samuel is meant to stay with us, there will be a dramatic improvement in his health over the next 24 hours and, if not, for strength and peace for us all to cope with what is to come. If you don't hear from us tomorrow, you will know that we are making the most of the time we have left with Samuel


With love and thanks for your prayers and support.

Critical

Last night Samuel's left kidney continued to drain blood and urine. His abdomen has swollen up again, which leads the Drs to think the kidney is also bleeding into his abdomen. Generally he looks more swollen in his face and chest too.

This morning the Drs from renal, neonat. and gastro will be talking amongst themselves and then get back to us with a possible plan for his treatment - but we know that treatment options are running out and one of the options may be palliative care. They don't think Sam would survive an operation to remove his bleeding kidney.

We continue to be thankful for the skill and care of the whole medical team - they are an amazing and dedicated bunch of people. But it seems there isn't much more that can be done medically for our wee boy..... so we wait and pray and hope.... yet realise that his little body has been through so much.... We know God can do a miracle, we just don't know whether he will... and so we trust Samuel into His care and will sit with Samuel and touch him and love him through the tears....as that is what we can do today.

This afternoon the girls will come to see him and we will explain to them how sick Sam is. This will be a tough conversation, but it's needed.

So we pray for strength for today. Thank you for your prayers for Samuel.
Team Davy

Kidneys drained!

We just finished writing the previous blog when we got the phone call from the ward to inform us that Samuel's operation was completed. The surgeons informed us that they thought the nephrostomy was a great success in terms of draining a significant amount of fluid from both kidneys, 150mls from the right kindey and 300mls from the left kidney, which was also mixed with a lot of blood indicating some trauma in the kidney possibly as the result of the overstretching. The doctors were amazed to see that the right kidney had reduced to almost the shape and size of a normal kidney after being so swollen with fluid. While there are still many unanswered questions as to why the kidneys were not draining properly and where the blood came from, it is a step in the right direction to see these kidneys properly drained and the whole abodomen significantly smaller and less stretched.

Apparently as soon as the tubes were inserted in the kidneys the urine just flowed freely out into the catheter bags and now you will see that Samuel has 3 catheter bags at the end of his bed, left and right kidneys and then the bag for the bladder. But we're thrilled at the dramatic change which has also improved his breathing and hopefully will also result in an improvement in the kidney function and reverse the rising creatinine levels. Tomorrow they will inject dye into the kidneys to see where it flows to try and determine the reason for the blockage, but at least for now the kidneys are able to drain directly rather than swelling up as they have been.

The other big question is concerning the possiblity of an infection, and the need to discover the source so targeted antibiotics can be given. Furthermore, the kidney drains also significantly increase the risk of infection so please keep praying for protection from any further infection now that he has 3 catheter lines running into his body.

We hope this is encouraging news after the previous blog, and we hope we can bring you more encouraging news in the morning.

Fighting an infection - please pray

Over the weekend, Samuel's condition deteriorated as his abdomen progresssively increased in diameter, which directly restricted his ability to breathe. At 4am this morning, the hospital called us to let us know that Samuel was not coping on CPAP and needed to be re-intubated to go back on ventilation. His body temperature was fluctuating and at times his skin cold and clammy and his red blood count was dropping significantly. They suspected an infection and started him on various antibiotics as well as giving him two blood transfusions. His urine output had dropped off and the vesicostomy was not yet draining the bladder so they also reinserted a catheter to assist in draining urine.

A number of tests were taken to detect the cause of infection but it takes a few days for the cultures to grow and indicate the source and type of infection. In the meantime, the doctors were concerned at his rapidly deteriorating condition and felt it necessary to order further abdominal x-rays and kidney ultrasound scans to try and understand the cause of the abdominal distension. While these scans were not conclusive, they did indicate that his left kidney was grossly enlarged and potentially full of fluid and/or a blood clot, possibly indicating an infection which would help explain the reduce urine output and dramatically increased creatinine levels from 76 on Friday, up to 177 this evening - the highest we've seen.

As we write, Samuel is undergoing his 5th operation on his 1st month's birthday. This procedure is called a nephrostomy which involves inserting tubes directly into his kidneys in an attempt to drain them by bypassing the bladder. The purpose of this operation is to relieve the pressure on the kidneys and enable them to function as well as they can, as well as reduce the overall size of the abdomen and the amount of fluid that is being retained somewhere.

Samuel is in a critical condition as his body tries to fight this infection on top of the many complications resulting from his complex condition. We will be spending the night at the hospital with Samuel while Jasmine and Candace are home with Nana and Grandad. We would really value your prayers for Samuel tonight especially as his little body has so much to contend with and the doctors do all they can to stabilize him.

Another weekend of waiting

Samuel was looking settled last night when I left him around midnight following his surgery earlier that day, he was still partially sedated from the residual anaesthetic in his system and all his stats (heart-rate, oxygen saturation, respiratory rate, blood pressure) were looking relatively good given his condition and recent surgery. This morning he seemed to be more unsettled as the anaesthetic had worn off and he seemed to be feeling some pain at times (waking more and grimacing), his breathing was more laboured, and his oxygen level was desaturating more often. His skin seemed paler and his tummy had become more distended as well. So he was given intravenous panadol to help manage the pain and he was also placed back on CPAP to support his lungs which, compressed as they are from his swollen abdomen, were still having to work hard on low-flow oxygen. That seemed to be the help that he was needing and his colour soon improved and he became more settled. Further good news about his creatinine and urea is that they are continuing their downward trend which indicates that his kidneys function is improving and we are seeing that he is able to produce good amounts of urine.

The vesicostomy went well and so now he has one less line into his body now that the catheter is no longer required. The next step is for him to recover from this surgery to the point where he can come off CPAP and be sufficiently stable to be transferred from NICU across to Starship hospital sometime next week, depending on when they have space. So now it's just a matter of watching and waiting again over the weekend to see how he recovers from surgery, as we were last weekend. However, this time the surgery was less challenging for his body so we're hoping the recovery period will be quicker.

Thanks to all those who sent birthday wishes to Jasmine, she had a fun jungle theme party at home this afternoon with a few of her animal friends. We'll see you again on Monday with more updates. Have a great weekend and thanks for checking up on Samuel's progress.

Francis

Operation No 4 went well.

We are pleased to say that Samuel seems to be doing well after his operation this afternoon. He now has lost the catheter and bag and has a hole in his lower abdomen, which urine will drain from directly into his nappy. The bladder wall has been stitched to the outside of his skin and the incision is about 2cm in diameter - it is quite hard to explain so we have put a link on the right column if you're interested in the details.

Samuel is back in Newborn ICU, on low dose of morphine for the pain, and low flow oxygen to help his breathing. We are a little more cautious about getting excited about the 'success' of his operation just yet, as we learnt last time that the after effects can be tough on his little body and his recovery was a lot longer than expected. So we are quietly optimistic whilst watching him closely over next 48 hours. Thankfully his urea and creatinine levels both continued a steady downward drop again today - 17 and 81 respectively. So we're interested to see what happens now the vesicostomy has been performed.

Jasmine had a fun 8th birthday with special family breakfast, lovely gifts & McDonalds for dinner, so she went to bed tired and happy. She is having 2 friends around tomorrow to play, so I need to go and decorate her cake - hence the short blog.

Thanks for the thoughts and prayers.... Shirley

Numbers and Time ....

Samuel's day is filled with numbers - each hour every ml of urine output is measured, his mean heart rate, the rate his TPN flows into him, how many cms his stomach is distended, the rate of oxygen he is on etc etc.... All data is recorded, analysed and tweaked for his next 24 hours.

Here are some of our numbers: Samuel will be 25 days old tomorrow and he will undergo his 4th operation which will take about 2 hours - the length of time we had holding him today! 1.30pm - the time his vesicostomy operation is scheduled tomorrow. 8 - how old his sister Jasmine turns tomorrow. 107 - his latest creatinine levels (indicator of kidny function) which show a steady reduction (in the right direction!) from their recent peak at 139 after the operation.

This afternoon Sam came off CPAP and back on to low-flow oxygen with prongs in his nose providing the O2 supply, but it's up to him if he wants it, as opposed to the oxygen being pushed into his lungs by the CPAP. He is coping really well just on low-flow which is a good sign and points to a definite improvement in his breathing capabilities since his heart operation. He's been seen today by the surgical teams and although there was discussion about the possibility of inserting a gastric tube at the same time to collect gas and fluids from the stomach, there is also concern about the additional complications that this may add while he is still fairly fragile. The nasal/gastro tube that runs from Samuel's stomach and out of his mouth can continue to do the job of aspirating the stomach in place of a gastric trube, but the vesicostomy is more urgent as it means Samuel's catheter can be removed (removing 1 more potential risk of infection) the bladder can drain more effectively and which may allow the kidneys to drain and reduce in size. However, his uretors (muscular tubes between kidneys and bladder) are very large and have not shown any sign of normal function, so we are aware this procedure may not impact the kidneys as we hope, but we are still believing for the best possible result.

But we know tomorrow will be hard - walking down to the operating theatre always make us feel a little apprehensive. Saying goodbye to him before he's wheeled into theatre and knowing he is about to go under general anaesthetic and be operated on again, with all the risks that entails, sometimes feels unbearable. We are very conscious it is also Jasmine's birthday and she will wake excited and expectant for our usual birthday breakfast tradition. We don't want her to miss out on the joy of her 8th birthday and are doing our best to keep our usual birthday traditions. Sometimes the 'normal' keeps us going when the waiting becomes unbearable.

But we finish with some more numbers - God's numbers: 'Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God They are innumerable! I can't even count them; they outnumber the grains of sand! And when I wake in the morning you are still with me.' (from Psalm 139, the Bible). We know we will get through tomorrow no matter what because of this reality. Thanks for your prayers for Samuel's operation tomorrow early-mid afternoon New Zealand time.

Our pastor and good friend from Urban Vineyard Lloyd Rankin came up to visit Samuel and pray for him before he and Vicki flew out to Texas for 3 weeks. We know they will be remembering Samuel during their travels and we are so grateful for their love and support for us during this time.