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!