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!