Week 36: 24th to 29th Feb 2012

Wednesday Update
Apologies for lack of updates and photos. Unsurprisingly, the NHS budget doesn't include WiFi and I'm not typing out 8 A4 pages of notes on my phone.

Dylan is doing really rather well. So far. If things continue as they are, he should be going in for surgery on Friday or Saturday. This means we have two days of relaxing slightly whilst he is stable ( stable is our new favourite word) before the terror of what effect the surgery has on him ( other than the positive effect of allowing him to breathe!) takes over. Perhaps we are being pessimistic, but we are very aware how quickly things can change when you're idge and the prognosis that we have been given over the last few months has been poor. We shall see. On the plus side, I've now changed two nappies! No hugs for Dylan yet though as he's still connected to a ventilator and is so doped up to the eyeballs with muscle relaxants and sedatives not sure he'd notice. Story time has resumed however. Photos and full story will appear tomorrow (Thursday). Promise!

Dylan Henry Jones
Born Sunday 26th February 2012 at 11:50am weighing 5 pounds 3 ounces.  Currently in NICU.

The problem with babies and plans is that babies can't read so don't follow them ...
Wrong city for the Mothers waters to break. Manchester. On a Friday night  Oops.
Fourteen hours later driving to Bristol at top speed towards another hospital.  Now in the early hours of Sunday morning and the Mother is getting prepared to be induced 2 wks early.  Here continues the adventure.
More - much more - to follow. Including the frustration involved in sitting in the back of an ambulance, stationary, in a layby and how to keep calm in the face of an obstreporous midwife.
On the plus side, whilst I did miss the game, I can enjoy the fact that Wales won and am sure beanie did a victory dance at the end

Week 35: 17th Feb to 23rd Feb 2012

The Cat is unhappy
(or for those that know him - more unhappy!).   We're getting more incidents of "mad half-hour" and just general skittishness.  He also appears to be eating more than me.  Altho' less cake.  Some of that is the fact that we're both stressed and the house keeps changing as I bring stuff in from my moving exploits and take stuff out for storage, tip or charity shop.  He's also trying to jump onto the bump which makes the Mother very unhappy.

Clearly he thinks that pregnancy is a bad thing as he's taken to sleeping between us.  A bit late admittedly.   This would be fine if the Mother was a normal size, but as it is one (ie me) or both of us is pushed towards the edge of the bed without the duvet.  All so we don't disturb him as this would be Bad.  That would then mean he would come and try and sit on someone's head and then dribble in their ear.  Or sleep on the bump.

Yes, we could kick him out, but he is obstinate.  He will smack himself against the door all night until either it's dawn or the door opens.  It's easier just to give him some space on the bed at least then we'll all get some sleep!


A Comment on LHR
Someone was asking what the value of LHR would be for normal beans.  Apparently it's of the order of  4.5.  Just to reiterate that for CDH babies if the LHR is above about 1.4 then things are ok, less than 1 then that's bad.  At worst, ours was measured at 0.2.  The last time it was measured it was 2.

Week 34: 10th Feb to 16th Feb 2012

Wednesdays Scan
There's not really much to comment on from Wednesdays scan.  Everything is as we expected: bean has lungs that are significantly bigger than they were and he has returned to being head down.  All of which is good news.  The heart seems to have recovered from being squashed - the suspected coarctation appears just to have been due to the heart being squashed.  One side is bigger than the other which again is to be expected as more pressure is required to put blood through the (non-existent) lungs.  Obviously lots of caveats about whether the lungs and heart will work when bean is out, but for now everyone seems pleased with progress and that everything that could have been done has been and it all appeared to work.  Hurrah!

So what next?
In a fortnight we're in Taunton for a scan and there the Mother will get steroids to increase sufactant in the lungs (help to mature them).  A week later (7th March) we're back in Bristol for one more final scan and then at 38 and a half weeks the Mother gets induced.  Nominally this will be Monday 12th March but does depend on available beds.  In the meantime bean has to stay where he is and not try and come out early.  He needs to grow poor thing.  Estimated weight last week was just under 4 and half pounds.  What's worse we've been strictly told that should bean be early we are not allowed to go to Bristol.  We are to make our way to the nearest hospital.  Which is a bad plan.  No offense to Taunton - a fine hospital - but it's not got the facilities and hence the experience that bean will need.  We'll risk an M5 birth!


Bold
After much thought, I too will be joining the ranks of the unemployable at the end of the month.  Even in the best case, the next two months are going to be "interesting" with a lot of time sitting around in hospitals or on the M5.  Mostly being stressed I am expecting.  As a contractor who works from home, I can't see myself really being able to sit down and focus on writing software in any meaningful fashion.  So I've not renewed my contract - I've done my best to leave doors open so that when things have settled down there may be opportunities to return.  We shall see.  On the plus side this means that I won't have to have the weekly night away in London and a 360mile round trip for a while.

In the meantime the Mother stops works on Friday for two weeks holiday before her maternity leave starts.  Bean is practicing his party skills and is bouncing quite happily and we think has also turned back round the right way again.  We shall find out tomorrow when we're back in Bristol for more scans.

Week 33: 3rd Feb to 9th Feb 2012

Bean Gets Hiccups
You would have thought that with only a partial diaphragm it wouldn't be possible for Bean to get hiccups.  Not the case at all as we've found out: the rhythmic bouncing of Bean providing some amusement (good thing he didn't get them on Tuesday when they were trying to anethestise him.  As it is he has a tendency to strike out at foreign objects invariably these are sharp so clearly he has his father's intelligence and his mother's obstinacy)




It really is quite incredible

This is the (popped) balloon next to a 5p piece

What is quite difficult to bring across is the impressiveness of the tracheal procedure.  The wound size is smaller than a 5pence piece (one of the new ones!) through which everything is done.  This in itself is quite common, I know people who've had knee surgery and other operations using keyhole surgery.  But then to be able to navigate around a foetus where due to the field of view of the camera it can be very difficult to tell which bit of pink skin you are currently looking at.  Then to open the mouth, get past the tongue, to the back of the mouth (first working out which way "back" is) and down to the trachea.  Once there, to either feed a balloon down the tube, position it correctly, fill it with saline to the correct pressure and then seal it or alternatively feed a wire through to pop the balloon (pressure in the lungs stops it from going back down into the lung), then feed another wire to hook the balloon out.  Utterly incredible procedure, enthralling experience (also nerve-wracking).

We should get a copy of the footage that the film crew took in which case I might see if it can be posted.    


Yesterdays Panic is Todays Success.  Or something.
Yesterday (Monday) the Mother got a call from Kings College asking whether it would be possible for us to arrive several hours earlier than had been previously arranged.  Having already acquired train tickets, made arrangements with various people (including the midwife) this wasn't the best news to hear given both of us were at work in different parts of the country.  After some cafuffeling we negotiated a time that meant we didn't have to get new train tickets saving several hundred quid in the process but did mean that we would go "straight in".  The poor midwife did have to get an earlier train and was really rather tired having been assisting at a delivery the previous day and hadn't had a chance to get much in the way of sleep. The advantage in all of that was that they were waiting for us.  Impatiently.  Well, makes up for last time I suppose!

Bean being an obdeient foetus was - and has been for at least a week - the right way round for birth.  Less useful for extracting balloons from tracheas though.  So now he's back in the wrong place (breach) but with no balloon ( we could hear the collective sigh from medics in the South-West when it came out).

The removal of the balloon is the reverse of the placement.  Bean is drugged, then single-port-endoscopy to first pop the balloon and then hook it out.  We have it in a small pot.  It's a few mm in length (it contained just 0.8ml of saline solution).  The only real difference this time was that along with the crowd of onlookers, we had a Greek film crew.  No really.

The procedure itself went well, and everyone seems pleased.  The Mother is currently comatose on the sofa in London so it's unclear as to what her thoughts on the matter are.  

But did it work (the balloon)?  Well, apparently yes.  Prof seemed very pleased with the increase in size of lungs.  Whilst the LHR (Lung Head Ratio) is a random number generator, we have gone from a value significantly less than 1 ( between 0.2 and 0.5) to about 2.  It should be greater than 1.  Whether the lungs work we won't know until March, but at least there is some mechanism for breathing now!

The only other point was that a large quantity (about a litre) of amniotic fluid was drained.  Whilst we were warned that it would build up because of the balloon, previous measurements had only shown that it was getting larger proportionally to everything else.  Prof disagreed and drained.  This should reduce the risk of pre-term labour (although the procedure to take the balloon out increases it), however the danger to bean of birth at this point is much less now the balloon is out.

And now we wait.
First to see whether the procedure to remove the balloon causes any problems (pre-term labour, infection, etc.).  We'll know in the next couple of days.
And then simply to see when they (Bristol) want to induce Mother.  We have a scan at Bristol next week after which they should start to sort out the arrangements.