A clue ...

Jonathan was scanned by the cardiologist again today (Tracy nearly took out the cardiologist with Jonathan's gargantuan mobile while she tried to remove it from the cot), who found that there was quite a lot of blood flowing into his lungs (not into the part where the air should go, but the part where the blood should be).  They think this might be one of the pieces of  his breathing puzzle, so they've put him back on the diuretics as they should help with circulation.  The diuretics will take a few days to have full effect, but hopefully we'll start seeing an improvement tomorrow.

We're relieved that they are making progress in finding out what's going on, as Tracy said she has never seen his breathing as laboured as it had been today, and we'd be particularly worried if they weren't able to to do anything.  They had him on oxygen again this afternoon which helped a little with his saturations.

They'll continue to investigate his breathing over the next few days.  One of the things they're doing tonight is monitoring his CO2 levels while he sleeps, which should give them a better idea how his lungs operate.

Today is actually the last day Tracy's mum spends with us before flying back to Sydney in the morning.  I'm sure Jonathan will miss all the hugs and Chinese lessons (and we'll miss all the food)!

Thanks to all the grandparents and non-grandparents that have been keeping Jonathan in their thoughts and prayers!

A little chubbier

Jonathan has still been having his intermittent breathing problems over the last few days - it's not that he stops breathing, but that his breaths aren't deep or long enough to bring enough oxygen into his blood.  It seems to happen particularly when he's upset and crying - which is either when he's wet or hungry - otherwise he's quite calm and his saturation levels are OK.  I guess we just have to try and keep him happy most of the time...  A respiratory specialist is going to check him out this week, and hopefully we'll get to the bottom of it.

His breathing problems are also making it difficult for Tracy to breastfeed him regularly.  Breastfeeding seems to exhaust the poor little guy - they described it as trying to eat or drink while you're running, so they suggested to feed him through his NG tube until they sort out the breathing problems.

So, he's been getting 61ml of breast milk every 3 hours - which for a baby at his weight is a full feed.  And, the result of this is that he's put on weight!  Although, we don't know whether it's a healthy weight gain or not - it could either be fluid retention (which I think is bad), or it could be growth.  We told the nurses we were a bit worried that he seemed to appear a lot chubbier in just a few days, so they're going to raise it with the doctors tomorrow when they do the ward rounds.

So he's been in SCBU Room 3 for 5 days now.  There are a few twins in there, along with a French baby that cries loudly and often.  He got moved into a big cot so his fandangled mobile can be hooked up properly - it's been used so often the batteries have now gone flat!

Anyway, here are a few photos to keep the grandparents happy :)

One step closer

Jonathan has now moved from the High Dependency Unit to the Special Care Babies Unit, which is one step closer to going home!  However we still have to sort out his feeding before he will be released and unfortunately it's one of those things where the doctors can't give us any idea how long it will take.

Yesterday we tried demand feeding during the day and Jonathan was exclusively breast feeding while I was around - he did surprisingly well and set a new record feed of 25 mins for a single feed!  The nurses then fed him via his tube during the night after I'd gone home.

Today however we tried it again and he only fed for a few minutes at a time, his breathing went funny again and when they checked his stomach contents there was some mucous in there....so the demand feeding project came to a premature end for the day and the doctors don't really know why he's having the problems.

The other thing is that Jonathan's weight has stayed static over the last few days despite being on full feeds so the doctors also want to see some weight gain before they'll give him the all-clear for going home.

So it's all a bit up and down at the moment and it's hard to tell whether the next day will bring feeding improvements or feeding obstacles.  We're still sticking to the one-day-at-a-time thinking for now and trying not to get too overly-excited or overly-disappointed about how long it'll be until Jonathan is discharged from hospital...we'll get there eventually!

In the meantime, he doesn't seem too bothered by his hospital stay and has been working on his posing...

The coy look:

The thinking pose:

Practising his karaoke:

The I-love-my-squeaky-banana-toy-so-much look:

Time out from the usual hospital routine

The mystery continues with Jonathan's random breathing and digestion issues...

The gastro surgeons have said they are happy with how Jonathan's digestive system looks from the images they took but he's still had a few instances in the last couple of days where his stomach contents don't empty properly and where his breathing has become a little laboured.  We're still hoping it's something that will go away by itself but for now, it's more of the waiting game.

In the meantime, we've been occupying ourselves with a few "more normal" baby activities.

Jonathan fascinated with his new mobile - the first time we put it up, he looked pretty freaked out, cried for a bit and then shut his eyes, but on the second go, he seemed to enjoy it!

The mobile wasn't designed to attach to hospital cots but luckily the banana-cat squeaky toy came to the rescue (don't worry, no toys were harmed in the taking of this photo).

Jonathan's view:

A glimpse into the hopefully-not-too-distant future - a rare moment during a nasogastric tube change when Jonathan was left tube-free:

Surprisingly, in the midst of all his breathing and digestion problems, Jonathan has been giving the breastfeeding a really good go and we've had a few good runs over the last couple of days. He's still getting his full feeds down his nasogastric tube but we seem to be moving in the right direction towards tube-free feeding!

Mysterious breathing problems

The mystery with Jonathan's occasional breathing problems still continues...over the last couple of days, there were a few times that his breathing got too laboured for the nurses liking so to be on the safe side, he was given a little additional oxygen to help him along.

The doctors have now ruled out the possibility of the problems being caused by infection or anything to do with his heart problem and so the main suspect at this stage is that it is something related to his digestive system (again!)

The nurses have observed that Jonathan's breathing issues seem to occur when his stomach is too full - either after a feed or when he has a problem clearing his stomach contents.

The doctors are guessing that there may be something along Jonathan's gut that narrows every now and then so that the stomach contents can't pass through, which means that his stomach stays full and pushes on his lungs to affect his breathing.  They did another scan of Jonathan's digestive system today and saw that there seems to be a narrowing near the part of the duodenum where the surgeons did the surgery. Apparently this is quite common but because of his already-compressed lungs, it may be a problem for Jonathan if it is slowing down the emptying of his stomach contents.

Another thing that the scan images showed is that Jonathan has a large stomach - it seems that he truly is his father's son! :)  Unfortunately, however, the large stomach and small lungs combination is not doing Jonathan any favours with his breathing...

For now, Jonathan has been put on smaller but more frequent feeds to help his stomach from getting too full and the plan then seems to be to wait and see whether the problems improve on their own over time.  We're praying that they do and that no further surgery is needed!

The comforting thing for us is that even when his breathing is laboured, Jonathan appears to be calm and not in any distress.

Here are some of the latest photos of our little guy:

Getting an additional dose of oxygen:

My mum claims that this is a smile - I'll leave it up to you to decide:

His little hand temporarily wrapped up after his cannula was removed:

1 month old!

Our little boy is already 1 month old today!  Time flies by way too quickly.

Happy to report that his breathing was better today.  The doctors think that the problems yesterday were probably due to a combination of his feeds being increased so quickly and him being taken off the diuretics at the same time.  This meant his body had a lot of fluid to deal with, some of which may have ended up in his lungs (which are already usually working harder than in healthy babies) and affected his breathing. 

Hopefully his breathing will continue improving so that we can pick up again on our latest project - getting Jonathan to take his feeds by mouth.  After a promising start to the breastfeeding, we didn't have much luck getting him to give it a good go after that because he was getting too tired, possibly due to his breathing problems, so the speech therapist has suggested that we also try to get him bottlefeeding at the same time as that takes less effort.  As we'd need to get Jonathan feeding properly by mouth before he can go home, hopefully we'll have better progress with it this coming week!

The other good news is that he no longer needs his supplementary nutrients via the drip as he is now getting all the nutrients he needs in his feeds of milk, so the doctors took out the long line in his foot. Both of his feet are now free again to kick about to his heart's content - the only downside to this is that he seems to particularly like kicking around during nappy changes!

Apart from unsuccessful breastfeeding attempts and breathing problems, the other bane of my existence at the moment is leaky stoma bags!  For some unknown reason, in the last week Jonathan's belly has become very un-sticky and the stoma bags for collecting the waste that comes out of his stoma won't stick on properly and keep leaking.  Before that the bags were lasting 2 or 3 days before they started leaking and needed to be changed but in the last week they were only lasting a few hours and so had to be changed 2 or 3 times per day - not fun for all involved.  The nurses usually don't like the job (understandable - who could honestly say they enjoy a fiddly job that involves baby poo??), Jonathan gets very agitated and I get very stressed seeing that it seems like a job that involves at least 4 hands to execute and I only have 2...

Currently my only role in the process is to hold down Jonathan's legs and arms to make sure they don't get near his stoma but eventually (hopefully after I grow 2 extra hands) I'll need to learn how to change the bag and clean the stoma so that I can do it when he comes home - at least it looks like I should get plenty of practice if those bags keep on leaking so quickly!

So it sounds like it'll be another busy week ahead but we'll try our best to do a better job with keeping the blog updated. 

A big shout out to our family (especially the tech-savvy great-grandparents!!) and friends who have been following Jonathan's adventures on this blog - lots of love to you all!

A few photos ...

Hi all, sorry for the lack of updates - it's been rather hectic the last few days.  Jonathan's doing well, though taken a few small steps backwards.  Over the last few days, they increased his feeds up to 60ml every 3 hours, but today had to reduce it to 20ml because he seems to be having trouble breathing.

His breaths are quick and shallow, which doesn't do the levels of oxygen saturation in his blood any good.  They think it could be because of increased fluid that his body needs to process, which is why they reduced his feeds, and also put him back on the diuretic.

They also suggested it might be because his heart is positioned towards the right of his body, so might be compressing one of his lungs - which is a bit more of a concern - but they're not sure of that yet.  He's also on antibiotics just in case it's an infection that's causing him the breathing problem.

But despite all this, he's still being a very happy and handsome baby.  We look forward to spending more time with him tomorrow!

A wash and a new hair style!

Jonathan got his first bath yesterday - surprisingly, after 3 weeks without a bath, he didn't actually smell like he needed one, but the nurses did it anyway.  We both missed his first encounter with water, but we're told he's not fond of a scrub and cried the whole way through.

Letting him stay dirty doesn't seem to be an option though, because today his stoma bag leaked twice (and I guess it's a good idea to have a wash after that).  Attaching a stoma bag to a fidgety baby so it doesn't leak sounds difficult - Tracy tells me an attempt by the specialist stoma bag nurse failed, so they had to remove that bag and try again a few hours later... hopefully now he's leak free.

On a more positive note, he's been having a go at breastfeeding the last two days!  Tracy says the first time he didn't appear too interested and he didn't really get what was going on, but he seems to have figured it out today and fed for about 5-10 minutes.  A speech and language therapist who specialises in cardiac babies there to help out, and said he's got the breathing and sucking at the same time thing sorted out, but noticed he gets a little tired while doing all that, so suggested he has a breather every 10 seconds... looks like he'll be having long drawn out meals!

The cardiologist also took him off the diuretic that helps keep his oxygen saturation up, mainly because he's been quite stable, and they'd prefer him to be on fewer medications if possible.  He seems to be doing ok without it so far!

He also had another brain scan today, and the ultrasound gel combined with yesterday's bath left him with a spikey hairdo.  No results of the scan yet, but we think the new hairstyle suits him.  Oh, and he's also graduated to a non-heated cot because he's able to keep himself warm with the help of a few blankets.

Lots of new stuff

There were lots of new things and experiences for Jonathan (and us!) today.

Jonathan got a new toy to keep him and teddy company - I think it looks like a banana but Chris insists that it's a cat...whatever it is, it makes a very cute squeaking noise when you shake it (which is sure to drive the nurses nuts by the end of the week):

Jonathan's first bottle feed - up until now, he's mainly been fed his milk via his nasogastric tube (which was a nice lazy option as it all just went straight down to his tummy and bypassed his mouth) but today we got to try giving him his feed using a bottle. It was a pretty good first effort and he managed to get about 15mL of his feed down before he started falling asleep. I guess it was a little tiring for him because he actually had to work for his food, but practice makes perfect, so we'll work on it!

The first time Jonathan got burped after a feed - he's probably wondering what we were trying to do to him!

Ok, so this photo doesn't actually show anything new, but he was being cute (again, no bias there) so I just had to include it!

A full stomach!

Our little man seems to be tolerating his feeds well, and tonight the gastro surgeon said they will probably increase them to 33ml every 3 hours.  Before today, they used to measure the contents of his stomach by sucking it out through the NG tube (the one in his nose) into a syringe, then after measuring it in the syringe, putting it back (kinda gross!).  If he had too much in his stomach, they'd skip a feed.  But now, they've actually said they're going to stop doing those measurements and just keep on feeding him his 33ml every 3 hrs, and only skip a feed if he vomits.  Sounds like he'll be having a full stomach!

He's been quite awake today - looking curiously at whoever's holding him.  He seems to enjoy blowing bubbles with his mouth - the nurses find it annoying because they keep on having to clean him up afterwards.  He also had a fit of hiccups tonight, and because he's so small, they end up being whole body hiccups which are quite funny.

3 Weeks and 1 Day

Hope you're all well.  To quickly summarise how Jono's been going for the last few days:

• He's still being fed the milk that Tracy's been working on.  Yesterday it was 15ml every 3 hours, and today it's been 22ml every 3 hours - so, heading in the right direction!  He's had to skip one or two feeds because he's had a full stomach, but more or less he's being fed regularly which is a relief.
• Jono's little stoma bag has been filling up too - which is more good news, as it means that his gut between his stomach and stoma are working as they'd hoped after the operation.  They noted that the stuff coming out is not a watery substance, which is good, because it means he's absorbing his food! (I have to admit that it's a bit strange talking about poo like this).
• One of the nurses found that the stuff coming out of his stoma had a bit of a pong (she politely called it an 'offensive odour'), so they sent a sample off to get tested just in case ... hopefully it's nothing - the results are expected in a couple days.
• He had a heart scan today, and although I'm told he cried all the way through it, his heart still looks the same as last time, which again is good.
• Great Ormond Street Hospital said they'll be treating Jonathan as an out patient, which means he won't need to be admitted there, but just taken for visits when they need to see him.  So, if he's still at St Thomas' when they want to see him, they'll organise a transfer, but if he's home, we'll just take him over.
• Jonathan's started looking at our faces when we talk to him now!  He makes funny shapes with his mouth when you talk to him... we're not sure whether he's trying to tell us to be quiet, or whether he's genuinely interested in our jabbering... 

Food...Finally!

Jonathan was put back on the milk again today. Hooray!

He's only being given small amounts to start off with (7.5mL every 3 hours) and the amounts will be increased depending on how his digestive system tolerates it.

We weren't there for the first feed but the nurse said that he looked a bit confused when he was given the first mouthful (who can blame him though - it's been a very long wait!) but seemed to enjoy it by the end. I managed to stick around to give him his 3rd feed for the day though and it was really great to finally get some milk into his belly, even though it was just by syringe, one small drop at a time - it made all the time I've spent with a pump worth it!

Chris and I returned to hospital in time for the next feed but unfortunately when the nurse checked his stomach contents, there was still quite a bit of milk sitting undigested in his stomach, so she decided to skip the feed. The nurse told us that it usually takes a bit of time for the stomach to get into action again after surgery so it may just mean that the gastro surgeons will decide to decrease the amounts he is fed to a level that his system can tolerate. In the meantime, the nurses will repeat the process of checking his stomach contents every 3 hours and then deciding each time whether to feed him more or just leave him to digest what's already there and skip the feed. Hopefully his system kicks it up a gear overnight but at least it looks like we're moving in the right direction!

Here's Jonathan's milk-drunk look after his feed:

As cute as he looks with a dummy, hopefully he'll get fed more and more milk so that we can wean him off his dummy-dependency:

In other news, after seeing the MRI scans, the neurosurgeons at Great Ormond Street have decided to hold off on the surgery on Jonathan's brain for now. The doctors think that his brain is still stable at the moment so it's better to wait until later to do the surgery. This means that Jonathan will stay at St Thomas' for now and they'll concentrate on getting his feeding up to speed whilst monitoring his head size and any other signs that there may be increasing pressure in his brain at which point they can reassess if it may be time to get the brain surgery done.

The brain problem has been one of the most worrying for us because the doctors are unable to tell us what impact the hydrocephalus has on the functioning and development of Jonathan's brain, so we're hoping that the doctors' decision to delay the operation is the right decision to make!