Fundraising in memory of Jonathan

The group of friends we met through our NCT antenatal classes have signed up to do the "Bliss Buggy Push" on 16 July in memory of Jonathan.  The Buggy Push is a 5km sponsored walk with pushchairs so Jonathan's little friends will also be taking part.  The event raises money for Bliss, a UK charity dedicated to helping babies born prematurely or born sick and is a charity that we came into contact with whilst Jonathan was in hospital.

Chris and I are still tossing up whether or not we would be up for joining them on the walk but we think it is a fantastic idea and will at least be there to cheer them on to the finish line.

We are also hoping to help the team with their fundraising.  Any donations will be very gratefully received and can be made through this link: http://www.justgiving.com/Jonathan-Hing 

Thank you also for your continued support - the last few weeks have been difficult for us but we are bearing up and are gradually getting back into the swing of things.

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Thinking of Jonathan with a smile

It's hard to believe that it's only been a week without our little boy. It's been a difficult week, particularly given that we've had to go back to the hospital to deal with the paperwork and have also had to make arrangements for the small thanksgiving service we're having for Jonathan at the crematorium tomorrow.

We have however been so comforted to continue to receive such great support from our family and friends. Thank you from the bottom of our hearts for your love, encouragement and prayers - we wouldn't be able to make it through all of this without them.

We miss Jonathan so much and are sad to be apart from him but we have such happy memories of him. The above photos are just a few of the many photos that never fail to make me smile - hopefully they will also help our family and friends also missing him to think of him as the happy little boy who brought us all such joy!

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Our little Jonathan

Email to friends today:

Hi friends

Sadly our little boy passed away last night after putting up a brave fight against all odds.

We are so thankful to have met him and spent these last few months with him.  We will miss him lots but we know that he is in a better place, away from all the poking and prodding that he has had to endure.

Thank you all for your support, thoughts and prayers - it has meant so much to us.

Love 

Chris & Tracy

The Royal Wedding from St Thomas'

Little Jonathan's playing a bit of a waiting game at the moment - we're still waiting for him to pick up on his breathing so they can remove the ventilator, and also waiting for him to start digesting his gastric fluids so he can be fed.  Until then, he remains on the ventilator, and is still being fed only by the long-line in his arm.  Right now, patience seems to be key...

The whole ventilator situation is a bit tricky - although it causes him a bit of discomfort and he needs to be sedated while he's on it, they don't want to take him off it too soon in case he can't cope and needs to be quickly put back on it again.  The doctors are waiting for Jonathan to show that he can breathe on his own, but the ventilator tube causes a lot of gunk to build up in his lungs which makes it hard for him to do it himself... the gunk gets suctioned out every few hours so he's able to breathe a bit more easily then.

Yesterday he had a not-so-great blood gas reading which meant they had to turn up his ventilation.  That was really frustrating to us as it seemed he was heading in the wrong direction.  It left us a little down when we left the hospital, but today, much to our relief, he had a better reading and so they started turning it down again.

Apart from just trying to cheer him on to get him breathing on his own, frustratingly there's not much Tracy and I can do to help with his breathing - two and a half weeks on the ventilator is two and half weeks too long, as while he's on the ventilator, it also means no hugs!

Anyway, in other news, Jonathan did get to enjoy the Royal Wedding from his bed in St Thomas' hospital, which is just across the river from Westminster.  Although he was sound asleep for the whole thing, he was able to hear the wedding bells, and if he'd opened his eyes, he would've seen the fly-by go past his window...

Back to the waiting game again

It's been a week since Jonathan's marathon operation and he's been slowly recovering.

The most promising development so far is that his gut & stoma started working yesterday. We were very excited when the poo started to appear in his stoma bag - apparently the night nurses were cheering him on when they first spotted it so we're not the only ones getting excited about poo!

Apart from that it's just been a whole lot of waiting - waiting for his aspirates to decrease & have less of the green bile, waiting for the redness in what appears to be an infected stitch in his scar to die down and most importantly waiting for his belly to get less distended so that they can start feeding him again & also take him off the ventilator.

Some days the long wait seems more frustrating than on other days but hopefully the wait will be well worth it when he's feeding & off the ventilator & we can get him out of his cot for cuddles again.

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Hairy Maclary from Donaldson's Dairy

Jonathan's been awake on and off today after yesterday's big operation.  We had a few scares where he became restless and wriggled around a bit, causing his saturations to drop.  One of the bigger scares happened early while we weren't there - he'd managed to dislodge the ventilator tube from where it should be, so they had to re-intubate him again, but this time through the mouth.  The mouth isn't the most comfortable place to have a tube going in, and it also means he can't suck on his dummy, so we're hoping he'll be taken off the ventilator in the next couple of days.

But, apart from that, he's been quite a relaxed baby and actually slept through most of the day.

His belly's a little swollen after the operation, but the doctors don't think it's a cause for concern right now.  A swollen belly can often happen after such a long operation, so they're going to wait and see if it goes down on its own.  His gut isn't working quite yet, but we're told it should kick in over the next few days, and once that happens, they can think about feeding him again.  He's been without food for quite a few week's now, we hope he hasn't forgotten how to eat!

On the whole though, the doctors are happy with how he looks today considering he had such a big operation yesterday.

Apart from his operation, he's been spoiled with a whole bunch of books lately, some from his Uncle Dawson and others from his grand-parents who are visiting right now.  One of the books he got was Hairy Maclary from Donaldson's Dairy which we read to him today ... he didn't seem to pay much attention, but we enjoyed it!

Oh, and just in case you're wondering about the little love-heart on the middle of his hat - it's not a fashion statement, it's just something the nurses stuck on so they know where the middle of his hat is.  Because his hat keeps the breathing tube in, it's important that the hat's on properly, with the middle where it should be ...

5cm less bowel

Jonathan underwent a marathon 7 hours worth of surgery today, and emerged with 5cm less bowel and in what appears to be a fairly stable state.

The surgeon found a kink in part of his gut, and they think it was caused by the way his scar healed from the last operation. When the kink was undone, they found his stoma turned a dusky colour, so they ended up having to remove the kinked part of his gut altogether.

He hasn't collected another scar as a result of this operation because they reopened the exact same scar that was created last time - all very tidy!

At the moment he seems quite relaxed, and his parents are able to breathe a sigh of relief given this operation seems to have been successful ...

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Operation Number 3

So ever since Jonathan had his little upset at the Royal Free a few weeks ago, he hasn't been feeding too well.  Actually, he hasn't been feeding at all - when he had milk put into his stomach by his NG tube, it just seemed to sit there and not really get digested.

The doctors told us that often when babies have serious episodes like Jonathan did, their digestive systems can shutdown for a few days while everything else sorts itself out.  After a few days, things are supposed to start working again - but in Jonathan's case, it didn't really happen.

So yesterday, they performed a contrast study on him where they insert a dye into his stomach, wait a bit, do an x-ray, and then look to see where the dye gets to.  The dye in Jonathan seemed to get stuck around his duodenum again - which is the same place he was operated on last time where they thought there was a blockage.  They thought they'd fixed it last time by putting in a small bypass around the blockage, and also making a small hole through the membrane that was causing the blockage.

They're not exactly sure what's causing the blockage now, so they're going to have to operate on him again tomorrow morning to open him up and take a look.  One of the things they said it might be is scarring or stickiness caused by the last operation - but they won't know until they operate.  If all goes well, they'll be able to find out what's causing the problem and fix it up all in the one operation.

In happier news, Jonathan's been lucky enough to meet another two of his grandparents over the last couple of days - but them being new to being grandparents, we haven't worked out what Jonathan should be calling yet.  For now they're yehyeh Stephen and ma-ma Lynda, but I guess it will be up to Jonathan to decide what to call them.  He also got to meet his auntie Kath who took lots of photos of him ...

We'll post an update after the operation tomorrow.

93 days old!

Jonathan has spent another day in NICU, still connected to the ventilator and fast asleep. Despite being heavily sedated with a cocktail of morphine, vecuronium and midazolam, he still manages to suck on his beloved dummy like there's no tomorrow!

They think this most recent episode is related to an infection and possibly a swollen gut, although all the tests and X-rays can't find a reason for his swollen belly. There might be a few more tests they can do to check it out, but they'd prefer him to be slightly less fragile (and so would we)!

At the moment he seems very relaxed and peaceful, happy to let the ventilator take care of his breathing - hopefully he stays like this for the rest of tonight.

He's 93 days old today, and Tracy's been into the hospital 93 days straight visiting him! We're starting to get to know the staff and some of the other parents here at Tommy's quite well - so glad he's being so well looked after.

He gets to meet his other grandparents yeh-yeh Stephen and ma-ma Lynda on Sunday, as well as his aunty Kath. He loves meeting new people, and with any luck he'll be awake for it!

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Back on the ventilator

Jonathan was intubated again this morning & is now back on the ventilator because he was struggling with his breathing overnight. The doctors think it's probably due to his belly being distended (although they don't know why) meaning that there is even less space for his lungs.

They've given him some morphine to keep him calm & settled so he seems ok. We're also doing ok (worried, of course, but coping) but would be again grateful for your prayers.

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Still as cute as ever (to us at least!)

Here are a few photos from the last couple of weeks to make up for the lack of photos in the last post.

Blogging from my phone again so I'm not sure how they'll turn out - apologies in advance for any upside down photos!

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Taking it a day at a time

So another week has flown by in a flurry of activity as we spent the week trying to squeeze in time to get settled at our new place and building flat-pack furniture in between our time at hospital.

Jonathan was much better this week than he was the last week and was only on the CPAP for less than a day before going back to just being on oxygen through the nasal cannula.

However this weekend he was a bit sleepy again, his body temperature was a bit up & down and his blood tests showed that his infection markers went up again so they've restarted him on the antibiotics again as it seems he may have another infection. They don't know where the infection could be and whether he is recovering from it (the markers usually lag a little behind the actual infection) or whether it could get worse so to be on the safe side, he's been moved back up to the Intensive Care Unit where he can be more closely monitored.

During the rest of the week, he had actually been moved to the High Dependency Unit (one step down from the ICU) and had been pretty stable.  He only had a couple of incidences where his oxygen saturations went down suddenly and the main problem was getting his feeding started again because his tummy wasn't tolerating his feeds and was producing the greenish gunk (mainly bile) - the same thing as what happened after the operations on his gut.  As a result, the doctors have decided to give his tummy a rest for a few days so poor Jonathan is currently on an empty tummy again.  

He's also lost quite a lot of weight (600g or so) due to the dramatic events of the past couple of weeks and is down to around 3kg again so the doctors put in a long line for an IV drip so that he can get some much-needed nutrition and calories.  As the doctors were having difficulty finding veins in which to put in a cannula for his antibiotics, Jonathan now also has a new cannula in a vein in his scalp - to protect the cannula, the nurses put a little plastic cup over it so it looks like he's wearing a little party hat!

Unfortunately it seems that the only explanation that the doctors have been able to give us for the dramas 2 weeks ago was an infection - they suspect that a bug passed from his respiratory system to his blood stream, and because he's got so little energy in reserve to fight infections because of his other problems, he couldn't tolerate it like a normal person.

We had a difficult discussion this weekend with the senior consultant who told us that what happened might not be an isolated incident, and it might happen again if he gets another infection so we should try and prepare ourselves for it - not in a practical medical sense like learning baby CPR (although that would be useful), but mentally... we're still trying to get our heads around that and all the issues that come with it, given that most babies catch loads of bugs and it's inevitable they get sick at some stage...

Anyway, apart from that, for now we're just happy that he's been soldiering on, and that St Thomas' are doing all they can for him.  He got to have a go in his bouncy-chair today, and had a few big cuddles with mum and dad.  We also cut his fingernails for the first time yesterday, and gave his hands a good scrub too - he likes to put them in his mouth so they definitely needed it!

We'll send another update soon.

One less tube!

Jonathan was just taken off his ventilator, and is enjoying his first cuddle with mum in nearly a week. Both he and Tracy much prefer this arrangement!

He's on CPAP now which is a continuous flow of air to his little nose, and looks like a mini fighter pilot with his new hat and mask! At the moment his saturations are stable and we're hoping it stays that way!

We've been reading him the Magic Pudding today (thanks Airlie and Ben), and although he has no idea what a koala is let alone a pudding, he enjoys listening to out voices and it seems to calm him.

He's also been reunited with his favourite toy - his classical music mobile. As soon as it was turned on, he settled quickly and fell into a relaxed snooze to the tune of Mozart.

We're so relieved he's recovering!

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The word of the day is ... extubate

After a somewhat unstable Tuesday and Wednesday, today, Jonathan appeared much better.

On Tuesday and Wednesday, his oxygen sats and blood pressure were all over the place.  When they tried to improve one, it fiddled with the other, so the doctors spent a lot of time trying to find the right balance.  They found he was very sensitive to adrenaline - which they used to bring his blood pressure and saturations up - but even the slightest whiff of it caused him to go from one end of the scale to the other.  

To complicate things further, when he started to wake up, he was wriggling around trying to pull all the tubes out, and then tried to cry - something he's unable to do while he's got the ventilator tube down his throat, which seemed to make him even more upset!  And then all of that commotion set off his saturation and blood pressure alarms too - so in the end, they said they needed to sedate him more and upped his morphine and clonidine, and when that wasn't enough, gave him some vecuronium which seemed to do the trick.  They also swapped the adrenaline to dopamine and dobutamine instead, and that seemed to help stablise him a bit further.

The physios were also called in to work on him to loosen the gunk in his right lung (they call it secretions), but during his treatment, he managed to dislodge his ventilation tube and cause his oxygen sats to plummet.  When that happened, the nurse looking after him ran to the other side of the room and pressed a big red button which sounded the crash alarm (complete with flashing lights - it reminded me of a fire drill) and within 3 seconds, about 10 doctors rushed in (where were they hiding?) and we got ushered out.  After a few minutes, they managed to reposition the tube and Jonathan seemed OK ... but his parents are still recovering from the scare.

When we went in this morning to see him (Thursday), they said he'd had a really stable night which was a great relief - his blood pressure and saturations were stable, and they were able to take him completely off the heart meds.  The only thing left to do now was to take him off the ventilator - but instead of just saying that, they talked a lot about "extubating" him.  Not knowing what "extubating" meant at the time, we were a bit worried about Jonathan having to go through some other invasive procedure ... but when it clicked that extubating just means to take a tube out (why didn't they say that in the first place), it all made sense (and we also found out that the opposite of extubate is intubate).

The ventilator he's using is a very nifty piece of equipment (and for some reason it's named Stephanie) - it ensures that he gets enough air, supports his own breathing, and lets him breathe more if he wants, and it also has a bunch of sensors so that the doctors and nurses can see exactly what his little lungs are doing.  The machine was giving all the right readings to indicate that Jonathan can breathe on his own, so they decided to extubate him around lunchtime today.  They sent us out of the room for this because it can be a bit uncomfortable to watch ...

But as with most things with Jonathan, it didn't go exactly according to plan.  They were able to get the tube out fine, but he wasn't too interested in breathing on his own.  They told us he did a bit of gasping, so they tried him on CPAP (which is a step down from a ventilator) but he didn't like that either.  They also but him on a nebuliser and gave him some other medication to try and open up his airways, but it didn't really help.  Eventually, he had to be intubated again - so for next few days, they're going to let him stay on the ventilator.  We were told at the end of the day that they think it's probably an inflammation of the throat that caused today's breathing problems (as opposed to a problem with the lungs), which can often happen when a baby needs to have tubes inserted quickly in emergencies.

They're still trying to figure out what caused the whole catastophe on Sunday night - the best explanation so far is a chest infection, so they're pumping him full of antibiotics to be on the safe side.  Some samples that were sent away to the lab came back indicating there was an infection - but they said infections usually don't cause babies to react in the way Jonathan did.  So, they're still scratching their heads over that one.

They're sending him down for an MRI tomorrow mainly to see if there was any damage caused when his heart stopped, and also to re-scan his brain as they're not totally in agreement with GOSH's assessment of his hydrocephalus ... so hopefully we'll have news on that soon.

Anyway, to sum it all up - Jonathan's much more stable today, but still in NICU.  His irregular heart is doing its thing and pumping enough blood around his body, and he should be off the ventilator in a few days time.  He also got his hair washed twice in two days so it's nice and fluffy and no longer smells of salt and vinegar and dirty socks...

And thanks everyone for your prayers and support over the last few days - it's made a huge difference!

Back to St Thomas'

So, on Friday, it seemed that all was going well with Jonathan being moved to The Royal Free which is much closer to home.  However, things took a dramatic turn on Sunday night ...

Here's a quick summary of what happened:

• On Saturday, we spent the day with him and he was fine.  His oxygen saturation were really good, and the nurse even commented that when he comes home, he mighn't need oxygen!  We were able to give him a bath (he had that salt and vinegar smell about him again) and play with him like we'd usually do...
• On Sunday, we spent most of the day with him, but noticed he was really exhausted, and a bit floppy.  He seemed like he wanted to wake up and play, but seemed like he was having trouble keeping his eyes open - but he's often like that when he's tired.  The nurse there was really good - she was paying us and him a lot of attention and making sure his saturations were OK, and they were fairly stable.  She said a lot of babies that get transferred can get quite tired for a few days after a transfer, as they take a while to get used to new people and surroundings, and that Jonathan's tiredness was probably down to that.
• On Sunday night at 11pm, we got a call from one of the doctors at the Royal Free to say that Jonathan's heart had stopped, and that he needed CPR to get his heart and breathing going again!
• We rushed over to the hospital, where we found a team of doctors working on Jonathan trying to stabilize his heart and breathing.  The doctor told us it took 10 minutes to get his heart beating again, and that although they'd managed to get it going, he wasn't able to breathe on his own so they had to hook him up to a ventilator.  They weren't able to get a cannula inserted to a vein to give him adrenaline, so had to inject it into the bone.
• We went through to see Jonathan, and to our relief he was awake and his eyes were open and he was moving.  He recognized us and followed our faces around which was another relief, but then we were told we needed to make room for the other doctors who had just arrived who were going to try and insert another cannula to give him some drugs  to help manage pain and put him to sleep.
• The Royal Free had to negotiate a bed for him back at St Thomas' - they were originally told there were no other beds in the whole of London for really sick babies.
• The CATS team arrived at about 1AM to transport him, but while they were assessing him, his heart stopped twice again and he needed to be resuscitated!
• At around 5AM, they managed to stabilize him and get him into the ambulance.  We all went to St Thomas' in the ambulance, and he was taken to a bed in PICU.  A cardiologist came and gave him an ultrasound and said nothing had changed in with his heart, so wouldn't need surgery immediately.  He was then transferred over to NICU.
• For the rest of Monday, they kept him on the adrenaline and also on the ventilator.  They zonked him out with an injection of something so that he would let the ventilator do all the breathing.  The nurses were really surprised to see us back in NICU after Jonathan only left them a few days ago ... they were really nice to us though, and managed to find us a room where we could stay during the day and night as we hadn't slept for ages ...
• Today, he was a bit up and down.  When he's sedated, he's mostly fine.  When he starts to wake up, he seems to wriggle around a lot and tries to breathe against the ventilator so they have to keep on sedating him.  They're also trying to find the right balance of blood pressure and air to keep him stable, but with so many variables and his own unique combination of problems, it's quite challenging.  When we left the hospital, he was fast asleep and although his blood pressure and oxygen sats were a bit on the low side, he was stable... hopefully he remains like that for the rest of the night!

Anyway, hopefully he'll be stable overnight and we'll be able to get a bit of rest.  Please pray for Jonathan if you can.

On the move

It seems Jonathan wanted to join in on the fun of moving - he was transferred today to the Royal Free, our local hospital.

It felt quite strange last night when we were packing away his things at the neonatal unit at St Thomas' after 10 weeks (plus 1 day) there. We'd gotten to know some of the nurses, doctors & parents there quite well & in a way were starting to feel quite at home there.

The local hospital is quite different - much smaller & quieter & not quite as well-equipped & high tech as St Thomas', it made us realise how spoilt we'd been at St Thomas'! Jonathan has also lost his window spot with a view of the London eye and is now in a corner spot in a room with no windows, ah well...

It's also a little scary because there's a new team of people looking after Jonathan & they don't yet know him very well so we're hoping they make the right decisions for his care. They're also not as experienced with dealing with complicated babies - the nurse today was telling me they only get one baby with a stoma every 6 months (at St Thomas' we'd met at least 5 other babies who had a stoma while we were there) and the nurse was actually asking me to talk her through how to change a leaky stoma bag! So it's been quite a change for us all!

The good thing is that they seem to be preparing us for taking Jonathan home so hopefully we won't have to be at the local hospital for too long. Jonathan will most likely still need to be on oxygen when he comes home so the community nurses will be visiting our flat to get us set up for oxygen tanks. As Jonathan will also still be having tube feeds, we will also need to be properly trained on how to test the nasogastric tube & feed him using the tube, as well as how to pass the tube into his stomach in case he pulls it out. Sounds like we'll be super busy when he does come home!

I'm attempting for the first time to blog on my phone & I haven't figured out how to post photos so I'm afraid there won't be any for now...I'm just hoping that this post will actually work or otherwise I would've just spent a long time typing on my phone for nothing! Ok, fingers crossed that it works...

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Our little mystery child

It's been another busy week and we're both pretty exhausted as we've been preparing for our house move on top of our usual hospital visits & work (for Chris).

Jonathan has been doing well this week although he is still on varying amounts of oxygen that the nurses adjust based on how hard he seems to be working to breathe and his oxygen saturation levels.

None of the doctors seem to be able to figure out exactly what is causing Jonathan's breathing problems but their best guess is that it is mainly due to his heart problems.  The cardiologists however are still scratching their heads about how exactly the 2 problems are linked as the heart condition that Jonathan has been diagnosed with is not usually associated with breathing difficulties.

The type of heart condition Jonathan has also does not usually need to be treated with diuretics and so the cardiologists aren't convinced that the diuretics are actually helping Jonathan's breathing problems even though they seemed to be working over the last few weeks.  The cardiologists' plan is therefore to gradually wean Jonathan off his diuretics and to put him on Propranolol, which we were told may possibly help his circulation and therefore his breathing and is a drug that was used in the "old school" way of treating heart conditions like Jonathan's.  The cardiologists will then observe Jonathan for a week before readjusting his medication if needed.

The doctors also want to get Jonathan transferred back to our local hospital (the Royal Free), seeing that they are not planning for him to undergo any more surgery at the moment and so he would not need the expertise of St Thomas's for now.  We would then go back to see the cardiologists and general surgeons at St Thomas's for regular visits so that they can keep an eye on his progress and plan his future surgeries.  So far there are no free cots in the paediatric unit at the Royal Free so we're still at St Thomas's until there is a space.

We'll also be moving house this weekend.  As we've yet to get a phone line and internet set up at our new flat, we will probably be unable to blog until we get connected again...but never fear, if there is any big news on the Jonathan front, we will find a way to update our blog and we'll be back on the blogging bandwagon as soon as we get the broadband up & running at the new place!

For now, here are some photos of Jonathan from the past week and hopefully they'll give both grandparents and non-grandparents a good dose of Jonathan until the next post!

Bath time - this photo has been censored with strategically-placed bubbles...

This is why they warn you about working with babies - we took multiple shots but couldn't manage to get any photos where he was not pulling a face or moving around in a blur.

Hanging around with daddy:

Back in the bouncer again but looking less dejected this time: 

Dreaming of having tea with the queen:

Hanging out with his floppy dog friend:

Jonathan's kung fu master pose:

Day trip

Jonathan got to leave St Thomas's hospital for the first time ever today for a mini trip out to Great Ormond Street Hospital for his neurology appointment.

It was quite an elaborate operation as he was put in a special transport incubator for babies and was taken by ambulance with 2 ambulance drivers and a nurse escorting him for the 15 minute ride.  The nurse told us that he seemed to really enjoy the trip and was happily looking out the window at the trees and lamp posts going by.

We also got some good news from the neurosurgeon who told us that he doesn't think that Jonathan actually has hydrocephalus - hooray!  His conclusion was based on some tests he did on Jonathan's reflexes using one of those small rubber hammery things, the MRI scan images they'd taken at St Thomas's a few weeks ago and the measurements of Jonathan's head circumference that were taken at St Thomas's over the weeks.

The neurosurgeon said that the channels between the 2 sides of Jonathan's brain developed a little differently than in normal babies but he also said that that isn't so unusual and it may make it seem on scans that there is more fluid than there actually is.  He didn't absolutely rule out the possibility of hydrocephalus developing later on but he was satisfied enough not to need to see Jonathan again on the brain side of things.  He did suggest however that Jonathan is followed up on the spinal abnormalities (a few of his vertebrae are fused together rather than being separate) when he is around a year old.

Overall we are really happy with how the neurosurgery appointment went and are very relieved that it seems Jonathan brain is ok!

Here are a couple of photos of Jonathan with his transport incubator:

And here are a few other random photos we've taken over the last few days:

Musical Wards

Jonathan's getting close to having stayed in each ward in the neonatal unit of St Thomas', after being transferred from SCBU (special care) back to NICU (intensive care) yesterday, and then up to HDU (high-dependency) today.  All this moving around is because of his breathing and oxygen saturations.  He does seem to like being wheeled around though.

Yesterday morning, the doctors transfered him to NICU not because his condition had changed dramatically, but so he'd get better monitoring of his breathing.  During that night, they'd noticed his saturations hadn't continued to improve as they had over the previous days with the diuretics, so they increased his dosage and sent him off to NICU for monitoring.  In NICU, there's one nurse for every two babies, so it's easier for him to be monitored there.

In NICU, because he still had low saturations, they were going to put the CPAP breathing tubes on him.  These are the same breathing tubes he needed when he came out of his two stomach surgeries, where the tube goes all the way in down to his lungs, and forces air in to make sure he breathes, and is stuck on face with a whole bunch of sticky tape - which I can't imagine to be very pleasant.  CPAP is different to the oxygen that he's currently on which just runs into his nostrils.

Anyway, when the nurse brought around the CPAP machine, it turned out to be broken, and in the time spent looking for a replacement, his saturations fortunately improved - so they decided he didn't need it after all!  To celebrate escaping another set of breathing tubes, we let Jonathan have a go in his new bouncer.  It's battery operated and bounces and plays music when you turn it on... but he didn't seem to be too excited about the experience...

Maybe he's just a bit too small for it right now...

We also tried to read him a story but I think he was more interested in sucking on his dummy.

Speaking of dummy's - he's had a lot of dummy action lately.  Because of his weak breathing, the doctors have decided that he can't be fed through his mouth for the time being, so breastfeeding and bottle feeding are out.  For now, he only gets fed down his NG tube. But, to help him remember how to suck, and also so he associates sucking with food, whenever they put food down his tube, they also put him on his dummy.  Jonathan loves his dummy, so this suits him just fine.

Anyway, after spending a day and a night in NICU, he was today moved back into HDU.  In HDU, they also have one nurse for every 2 babies, but the babies are a bit stronger and don't need as much attention.  His saturations remained fairly stable for the day - they dipped and the alarms went off a handful of times, but that was only when he was upset about something (hungry? tired? nappy? itchy?) so not really too much of a concern.

The doctors are still trying to get Jonathan to put on some weight and grow more, as he's now over 6 weeks old, but still weighs the same as when he was born.  They still think he's burning all his food on breathing, so they're going to fortify Tracy's breast-milk by adding energy in the form of a powdery supplement (I forget the name) which they just mix in before putting it down his tube.

Tracy now has the tough job of having to keep the milk supply up without actually breast feeding Jonathan, but by expressing every couple of hours.  We might have to bust out Por Por Emily's lactation-enhancing fish and papaya soup recipe that she left ...