Weekend Cuddles

Plenty of love for Jonathan this weekend - first a cuddle with mummy:

Then with daddy:

And also with por por:

Finally he was returned to his cot for a moment of quiet contemplation:

No "new news" today on the transfer for his shunt surgery, nor has he been given anything by mouth yet.

Also, Jonathan's breathing is still a little shallow so the levels of oxygen in his blood (measured by the little wrist band that gives his hand that ET-like red glow) are lower than normal. Apparently heart babies frequently have lower levels of oxygen in their blood, so the cardiologists are keeping an eye on Jonathan to make sure that they are still happy with the lower level of oxygen and if needed, they can decide to give him some extra oxygen as a boost. The nurses have also been putting Jonathan on his tummy or on his side in the cot rather than on his back which makes it a little easier for him to breathe.

Again, I guess we just have to wait and see what happens!

16 Days Old

Still no food for Jonathan yet - he had aspirates in his stomach that needed to be drained for him, and they can't feet him until that clears up.  The doctors are also trying him on a diuretic to see if they can get him to breath a bit more regularly - he seems to be breathing more quickly and shallower than normal babies, and they think it might have something to do with fluid in his lungs, so they think the diuretic might help with that.

Unfortunately, King's decided that they weren't the right hospital to operate on Jonathan's brain because of his cardiac condition and because they're not really a cardiac specialist hospital like St Thomas'.  It seems the doctors at St Thomas' are now trying to get him in to Great Ormond Street Hospital for the operation instead.  His head size decreased slightly since yesterday, so the doctors aren't saying that he needs to operated on immediately which is good... but the sooner they can get it done, the better.

He's coping well - Tracy was able to cuddle him for a few hours this afternoon, and he was wide awake and alert when I saw him tonight.  We're glad that he's oblivious to all that's going on and seems to be a happy baby!

In SCBU!

Jonathan was taken off the ventilator today, and he no longer needs any pain killers either!  He was also moved from NICU (intensive care) to SCBU (special care) because the doctors thought he was stable enough to no longer require critical care - great news!

He got to spend most of the afternoon being hugged by Tracy which he seemed to enjoy, particularly the skin-to-skin time they had together.  Tracy said he slept through most of it, and he managed to dribble all over her chest.  I had a go at holding him against my chest too, but he wasn't too comfortable with it, and neither was I ... maybe we'll give it another go next week.

The nurses mentioned that his head circumference has grown 1cm in the last 2 days, which is a bit of a concern, but I guess we'll wait to see what the doctors say about it tomorrow.  At the moment we're not sure whether it was just a wrong measurement, or something more serious.  When we looked at the measurements they'd been taking every day since he was born, there has been a bit of variation in head size ... so we're really not sure.  It still sounds like he's set to be transferred to King's on Sunday, so hopefully that still goes ahead and they're able to sort his brain out soon.

Anyway, at the moment, we're just happy that he's doing well after yesterday's operation.  One day at a time!

2 Weeks Old

We visited Jonathan tonight, and he seemed to be recovering well from the operation on his duodenum.  He opened his eyes a few times to say hello, but because they've got him on morphine, he was quite drowsy and quickly drifted off to sleep - although he kept a firm grip on mum's finger!

He's still on the ventilator, but while we were there they changed the setting so that it was only supporting his own breathing, rather than doing all the breathing for him.  They think they'll be able to take him off the ventilator completely tonight and stop the morphine, and give him paracetamol instead.

Tonight's visit was a bit hectic because one of the other baby's in the ward was having a few problems - all the alarms that were monitoring her sounded at once, and a crowd of doctors and nurses rushed in to resuscitate her.  Her parents looked very distressed and had to leave the ward while they worked on her, but it seems they were able to stabilise her after a few minutes.

We were feeling quite upset about Jonathan's breathing tube before then, but that incident quickly put things in perspective.  We're thankful that Jonathan's stable, and that the doctors aren't expecting him to have emergency problems like that.  We were also comforted by how quickly the doctors were able to act to help the other baby, so we know Jonathan's in a safe place.

The nurse mentioned tonight that Jonathan might get transferred to King's on Sunday or Monday in preparation for his brain operation (inserting a shunt) - the sooner they'll be able to get that one out of the way the better!

Hopefully tomorrow he'll have the breathing tube out and he'll be back to his happy self.

Post-op update

Ah blog my old friend, we meet again - let's see how long we stay friends for this time...

So we called up NICU this afternoon and were told by the paediatric surgeon that he was very pleased with how Jonathan's surgery went this morning. Turns out the blockage was caused by a membrane in the second part of the duodenum. The stomach contents could still pass through very slowly because there was a small hole in the membrane but otherwise it was blocking things up.

The surgeon has excised the membrane and to be doubly sure that things get flowing, he has also put in place a bypass. They also did a quick check of the large intestines and they seem fine.

Now it's back to the waiting game - the doctors won't give Jonathan anything by mouth for about a week or so to allow some time for the duodenum to heal and then they'll give him small amounts of milk and gradually increase the amounts depending on how his digestive system tolerates them until he's up to full feeds. Jonathan will have to be in hospital until he's on full feeds so it sounds like we'll need to be patient for a while longer!

13 Days Old

Unfortunately, the doctors found that Jonathan wasn't digesting the Dioralyte properly, so they think there's a blockage somewhere in his duodenum.  They've done quite a few scans and x-rays, but won't know definitely what the cause of the blockage is until they see inside him.  So, they're going to operate on him tomorrow, to find out where the blockage is and hopefully bypass it.  He will need to go under another general for the operation (which means he'll be on the breathing machine again), and it will take a further 3 weeks after the operation until his able to take a full feed... poor little guy.

They've also mentioned that his brain operation might go ahead on Sunday - so he could be in for two major operations in less than a week!

Jonathan's become quite popular at St Thomas' - all the staff are always asking how he's going.   6 med students dropped by to say hello to him, and the neonatologist told Tracy that Jonathan's been seen by 24 different consultants!

Despite all that's going on, Jonathan's still a very happy and inquisitive baby!

And here are today's funny photos that Tracy so beautifully captured... he pulls the strangest faces sometimes:

12 Days Old

24th January 2011

The gastro surgeons got the nurses to try him on Dioralyte today, to see if his stomach would process it.  At the moment, he still isn't scheduled to move to Kings yet for his brain surgery.  But, he got the cannula removed from his arm, so now both his arms are free!

11 Days Old

23rd January 2011

10 Days Old

22nd January 2011

Jonathan sometimes does the Hing pout:

9 Days Old

21st January 2011 - part of an email from Tracy


Jonathan's been fine during the night but when they looked at his aspirates, there were chunks of stuff back in there so they've decided to stop the feeds via the mouth for now and the gastro surgeons are doing another x-ray this afternoon to make sure there aren't any obstructions higher up in the gut.  (The results of the tests showed that stuff was flowing through his gut, but a lot slower than expected ... so they've to stop the feeds and give his stomach a bit more time to see if it works itself out).

The cardiologists want to take some more pictures to make sure they know where the blood flow in a particular area is going so they're doing some more imaging stuff this afternoon, there was mention of using saline or something to get a clearer picture.  (The results of this scan showed that the part they were looking it was behaving as it should - but he still has his VSD + DORV).

They have no cots available at King's at the moment so they're waiting for a cot to become available and he will then be transferred there for more observations before they go ahead with anything.  They'll let us know before anything happens.  (The team of neurosurgeons are based at Kings hospital at Denmark Hill, so they think it's best if he's transferred their for observation first before they operate to insert the shunt for his hydrocephalus).


Just in case you thought he was always a peaceful baby, here's one of him crying:

But he usually is quite happy and most of the time sleeps peacefully, like this:

8 Days Old - Jonathan's First Feed!

20th January 2011

It was a big day for Jonathan today!

First, he got his breathing tube removed - he recovered well from being sedated yesterday from the MRI.

Then, he got to have the very first feed of his life!  Before today, he was being fed through a drip because the gastro surgeons had to make sure that his gut had recovered from the operation and the stoma was working properly.

The first attempt to feed him using a syringe was a bit messy, and Jonathan didn't look too impressed:

So they tried to get him to drink from a cup instead:

And the teddy that Por Por Emily bought him keeps him company when we're not there:

7 Days Old

19th January 2011

Jonathan had his MRI today which confirmed that the cause of his hydrocephalus is aquaductual stenosis.  The good news is that it's not getting any worse, but the neurosurgeons said they will have to operate.

Jonathan was sedated so that he wouldn't move around while they did the MRI.  To be on the safe side, the hooked him up to a breathing machine just in case he stopped breathing, and they'll keep him on that for the rest of the day until the sedative wears off.

Tracy and Jonathan also received their first bunch of flowers today ...

6 Days Old

18th January 2011 - sent very early on the morning of the 19th to family

Hi everyone,

Tracy was discharged from hospital yesterday so got to spend last night at home.  I think she slept better at home, but she said it's a bit strange leaving Jonathan in NICU.

Jonathan seems to be recovering from his operation well.  Unfortunately, we haven't been able to feed him yet, as there's still a few flecks of green gunky stuff coming out of his stomach.  Once that clears up though, we should be able to start feeding him the milk that Tracy's been working so hard on.  Emily just bought her an electric breast pump today, so that should help with the food supply!

Jonathan's scheduled for his MRI scan tomorrow to find out what's going on inside his head.  He needs to be sedated for it so he stays still, but to sedate him he needs to have a ventilator hooked up again in case he stops breathing, so he'll be hooked up to that tomorrow too.

I got to hold him for the first time today for an hour, and he looked very settled, although he seems to looked settled when he's just lying in his cot too!

Anyway, we're very happy that he seems to be doing well, but please pray that that the scan will go well tomorrow so that the doctors can tell what they need to do to help him.

Love,

Chris and Tracy.

5 Days Old

17th January 2011

4 Days Old

16th January 2011 - To Family

Hi All,

Baby Jonathan's stoma seems to be working, and the nurse was able to connect a bag today to collect the waste.  She showed us how to take care of it, and it doesn't look as bad as it sounds.  He woke up today for a little bit while we changed his nappy today, and was happily looking around the room, oblivious to all that's gone on in his 4-day-long life.  We're so glad that he seems to be happy about all of this, and not in too much discomfort.

They've stopped draining his stomach from his nose tonight to see if he'll be able to process it on his own.  They've also taken him off the pain killers, as they said he looks pretty comfortable and mightn't need them any longer.  So, if he goes well overnight, Tracy should be able to start feeding him tomorrow which I'm sure he'll be looking forward too!

Please continue praying for him - we're a bit concerned about his head once again as the nurses found it increased in size slightly today.  The consultants should see him tomorrow and hopefully we'll know whether it's anything to worry about then.

Love,

Chris and Tracy

3 Days Old

15th January 2011 - To Family

Hi again,

Jonathan started breathing on his own late this afternoon, so they were able to take him off the ventilator, and he's now completely breathing on his own which is fantastic news.  The stoma is also showing signs that it's starting to work, so hopefully in the next few days he'll be able to be fed for the first time which I'm sure he must be really looking forward to.  He's still a bit groggy after the operation, but he did open his eyes a few times today to say hello.

Tracy continues to recover very quickly - so quickly that one of the doctors wasn't sure that she'd had the c-section.  They mentioned yesterday that she might be discharged on Monday, but Jonathan probably still has a while longer in NICU (neonatal intensive care unit).

Anyway, we're really glad that Jonathan's being looked after well, and at the moment, he's responding to treatment and is quite stable.

We'll give you more news tomorrow.

Love,

Chris and Tracy

3 Days Old

15th January 2011 - To Friends

Hi guys,

Thanks for all your messages - Tracy and I are pretty exhausted so sorry we've been a bit slow with replying to emails and all...

But anyway, Jonathan's surgery went well yesterday.  For the operation, they had to put him on a ventilator, but today he was breathing on his own so they took him off it.  He's been a bit groggy with the pain killers they've been giving him, but he has opened his eyes a few times today to say hello.  Tracy got to have another hug too so that was great, and the two of them looked really happy together.

Jonathan will probably have to stay in the baby ICU for a bit longer as he's got a few things that they want to keep an eye on, but right not he seems to be pretty stable.  We're not sure when he'll be able to come home with us, but he's being looked after really well by everyone at the hospital and we're glad that he's getting good care.

Tracy continues to get better - one of the docs didn't actually believe she'd had a c-section because she'd recovered so quickly.  I'm sure it won't be long before she's back eating sushi ... :)  We think she'll be discharged on Monday, so I need to do some cleaning!

Anyway, hope you're all doing well wherever you are in the world!

Speak soon,

Chris and Tracy

3 Days Old

15th January 2011 - To Family


Hi everyone,

Jonathon had an operation yesterday to bring his large intestine closer to the skin, and then make a hole so the waste from his gut could be emptied.  I think the doctors called it a stoma.  He was under general when it was done, and he's been a bit groggy since then.  As part of the procedure, they hooked him up to a breathing machine, and were hoping to remove it sometime during last night when he starts breathing on his own again.  When we saw him last night, he was still connected, but started to open his eyes and look at us which was quite exciting.  He keeps sucking on the breathing tube that's going in his mouth - he must be really hungry!

The doctors that performed the operation said it went well, but we were told it would take a few days to see whether it's working.  Once it's working, Tracy can start feeding him.  At the moment, he's being hydrated by a sugary-water drip.

They also performed a few other tests on Jonathan yesterday, and found that his spine and ribs don't look quite normal - the consultant said he looked a bit compressed vertically, and that some of his ribs were fused together.  They don't think that's a problem right now, but something to keep an eye on as he develops.

They're going to get the geneticists involved to see why he's developed the way he has, and to try and give us an idea of how he'll develop in the future.

Once he stabilises, they'll get all the specialists together to see what should be done next - at the moment, although his heart and brain still have problems, they seem to be stable.

Tracy's continuing to recover very well - she's been up and about walking across the floor to visit Jonathan every few hours.  The doctors are impressed by how quickly she's been up and about.

Anyway, one day at a time!  Jonathan and Tracy's care so far has been excellent, and we're glad that everyone's taking time to try and explain everything to us.  Hopefully today he'll be off the breathing machine and we can play with him again.

Thanks for all your prayers,

Love,

Chris and Tracy

2 Days Old

14th January 2011 - To friends


Hey guys,

Hope you're well.

Jonathan Alan Hing was born yesterday at 11:24 am. He is very cute (not that we're biased), has beautiful baby feet and enquiring eyes. He also has a full head of hair and weighs 2.7 kilos.

He was delivered by a straightforward c section, and Tracy's recovering very well. She now has her own room with 5 star views of the Thames, Big Ben and the Houses of Parliament!

Baby Jonathan had to spend the night in the baby intensive care unit, and is currently undergoing some urgent surgery.

Tracy was able to spend half an hour last night giving him cuddles, and he looked very happy with that.

We're both very excited and proud to have become parents yesterday! Hopefully his surgery goes well and we're able to give you more news soon.

Chris and Tracy

1 Day Old

13th January 2011 - To the new grandparents

Hi folks,

Jonathan Alan Hing was born today around 11:30. He has lots of hair, ten fingers, ten toes, very soft skin and seems to recognise our voices.

Tracy is doing ok, even more so now that she can eat and drink again.

Baby Jonathan is being kept downstairs in the baby intensive care unit while they examine him. He still has his problems with his heart and brain, and they've also found he doesn't have a hole in his bum, so although they haven't told us exactly what the plan is yet, it will most likely involve surgery of some sort.

Tracy got to hold him very briefly after he was born, bit will probably have to wait a bit longer to see him because he's on the floor below. Hopefully she'll be moved downstairs too where the post natal ward is, but since they don't have any beds, she's staying in her own private room in the birth centre.

We're both very excited to have become parents today.

Love,

Tracy and Chris

Let's give this blogging thing another chance ...

So, after failing miserably in our first attempt to write a blog, mainly because we never did anything that was worth writing about (let alone getting others to read it), we thought we'd try again.  Because this time, rather than  ramble on about our (non) adventures in London, we thought we'd focus on someone far more interesting, handsome, and adorable...

Our son Jonathan was born on the 13th of January 2011, at 11:24 AM, in St. Thomas' hospital, just over the river from Big Ben and the Houses of Parliament.

While Tracy was pregnant with Jonathan, the doctors told us that he'd be a very special child.  During the routine pregnancy scans, the doctors found that he had problems with his brain (hydrocephalus) and heart (VSD + DORV), and weren't sure he'd make it to full term.  But, he did, and was delivered by caesarean (because of his large-ish head) - and today, he's a big10 day's old!

Rather than tell the whole story again from when he was born, we'll just post a few extracts from various emails we've been sending around to get us up to speed - hopefully this blog will be a good way of keeping everyone up to date with how he's going...

Let's see how long we can keep this going for...