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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