Dylan Henry Jones - Week 5

Thursday - 29Mar12
 Clearly Dylan has his father's winning ways and has irritated sufficient people at St Michaels that they've decided to send him to solitary confinement.  In Taunton.

(to the tune of Three Lions)

He's coming home

He's coming home

Dylan's coming home

Well, not quite!

Late yesterday evening, it was mentioned that actually Dylan could get exactly the same level of treatment in Taunton (Musgrove Park Hospital).  Then this morning it was confirmed that in fact he was to go to Taunton for the remainder of his treatment\recuperation.  As soon as possible.  Like this afternoon.  So I drove up to Bristol to load up the car with the stuff from the charity house (it's astounding how much stuff accumulates over a month!) and then drove back to Taunton whilst the Mother went in the ambulance with Dylan.  They arrived at about 5pm.

Dylan continues to breathe without aid and is starting to work out the whole breast-feeding malarky.  Again remarkably quickly.  There are issues with him breast feeding as it's quite hard work for him and he's also got to work out how to eat and breathe without getting the two mixed up.  Other than that he continues to do really well.  He is in solitary confinement at the moment.  This is solely to ensure that he doesn't have any nasty (transmittable) bugs.  MRSA being the principal test and this is standard procedure for transferred babies.  Once cleared he will probably end up in SCBU - the lowest end of intensive care.  To be fair, if you didn't know, he looks and acts like a normal baby.  Which is remarkable given where he was on Monday!

So we are back home, which is very fine.  And Dylan is just down the road.


Wednesday - 28Mar12
Well, the hi-flo experiement was a diasaster.  The hi-flo mask as can be seen from the photos below consists of a two prongs attached to a thin tube connected to the ventilator.  The prongs are meant to go in his nose and the tube is traped to his face to stop it moving around.  Given a baby that moves around quite a lot, it mostly needs to be repositioned every hour or so.  Which is what happened.  At midnight it was found that it was mostly useless, so it was removed.

I came in at about 9am to find him without any form of ventilation and doing very well thankyou very much, and that's the way it remains.

One of the things that being on hi-flow was going to give was the ability to try and feed him properly.  So just because he's not on ventilation doesn't mean that this can't still be done.  And as it turns out, he's really interested in breasts.  Typical bloke really!  In fact so keen is he, he decided to remove his feeding tube.  Oops.  The only downside is that at his only attempt, the Mother had already milked and he wasn't allowed to eat as he was about to get an ultrasound.  The ultrasound was to work out the reason for him being yellow.  Yellow that is, not ginger.  He's meant to be ginger.  So jaundice is reasonably common in beans and the IV food that he had been on can be a cause of this, but the ultrasound was required to make sure it wasn't anything more serious.  

So we suddenly find ourselves with a baby who can breathe without support - for 20hrs at least.  And this is a fabulous thing.  We are slightly dumbfounded though.  The consultant seems slightly banjaxed by our lack of ear-splitting grins.  I think we're just not really believing it or waiting for it to go wrong as we've been building ourselves up for disaster or months of hospital the last 40weeks. But it is fabulous.  All we can hope is that he contains to maintain his ability to keep his lungs open and his sats and blood gases remain good.

What now?  He is still on a further 4 days of antibiotics and an indeterminate length of time on the reflux drugs and the drugs for the chest.  And see how long he can keep breathing on his own for.  Hurrah!


Tuesday - 27Mar12

"Who the hell are you?!"

Oops.  Ok so the chicken pox rumour was slightly over-egged.  Blame it on a context failure between myself and BTB!  There is an unsubstantiated rumour that someone with chicken pox was in one of the rooms on the ward on Sunday (not the one that Dylan is in).  Noro-virus has been confirmed however and the ward remains closed.

Right on with the news!  Dylan is and has been doing really well.  He continues to be on good form being quite lively when awake.  He's also reasonably tolerant to heel pricks and a new canula went into peripheral veins with minimum of fuss.

 The final results from the bloods show two forms of infection: a simple'ish one that might be expected from a line infection and a more complicated one of the E.Coli family.  This last one means that Dylan will need to be on antibiotics for between 10 and 14 days (ie a further 5 or 6 days).  Unfortunately the antibiotics are IV and his current canula failed at lunchtime today, so yet again he had to have two different medics trying to put in a peripheral line.

"what is this thing you've attached to my face"

As far as ventilation goes, there are games to play.  He is essentially at the bottom limt of what the CPAP can supply.  The options are , either to have time on and off CPAP (eg 6hrs with no ventialation followed by 6hrs on CPAP) or to use a different ventilation method, hi-flo for example.  No real set method and arguments for either approach.  In the end it has been decided to go for hi-flo on the grounds that is perhaps a better method for allowing him to develop the ability to maintain his breathing.   The hi-flo essentially maintains a peek air pressure so that his lungs should remain inflated at all times and just provides support to him at a greater granularity the closer the support gets to him breathing on his own.  If that makes sense... He's not totally impressed with the new ventilator: it's just two prongs that go up his noise and he's removed it a number of times already in the very short time he's had it in.

It has also been decided that he needs a calorie boost. So whilst he's getting the amount of food a "normal" baby would need, he probably needs more than that as he is working harder than most babies in order to maintain his breathing.  The calorie boost is achieved by adding a supplement to his milk allowance.

The effect of Quantum Mechanics

Other than that he's a fairly normal vomity-poo machine.  Otherwise known as a baby.  He has a lovely range of books but I'm not sure whether he has any preference between intellectual content.  He seemed equally happy and content with Giraffes Can't Dance, Oliver Twist and a book on Quantum Mechanics.  Perhaps the latter made him more sleepy?  Hard to tell to be honest!




Sunday - 25Mar12
An interesting day.

"Wow, I've been here a month!!"

Dylan seems to be fighting off the infection.  He is still ill and on antibiotics, but his ventilation pressure has been dropped and is now down to what it would have been on Friday if he hadn't got an infection.  So that's all good.  We can probably say that the infection has taken 48hrs off the healing process.  It should be said that his healing process has been quick.  And today he was much more lively than he has been over the last two days.

On the downside, the ward has been officially closed.  I'm not sure what that actually means over above only parents into visit.  However, it's now "barrier caring".  Everyone - parents included - has to glove up and wear an apron when inside each of the rooms, obviously changing gloves between patients! Not really skin to skin contact.  As well as the noro-type virus, there's also chicken pox on the ward.  Yay. 

And, yes, the ventilator is always this skew.

Dylan Henry Jones - Week 4

Saturday - 24Mar12
Well, it's all go at St Michaels.  If you were thinking of visiting us, two points to make:
1) the ward is currently closed to all visitors except parents for the next couple of days at least.
2) when it is open, if you have been in contact with anyone who has had a D&V type illness in the last 48 hours, please don't come!
Sorry, I don't mean to be rude or unpleasant, we really do like receiving guests, but there is a noro-type virus on the ward and that's not a great thing for small beans to be getting.

On the subject of small beans, and it is interesting to see that Dylan is resorting to type-Jones stock: scrawny.  But with huge feet.  Shame his lungs are nadgered otherwise he'd make a great Flipper.  A comment has been made by one of the medics that perhaps they should stop his diuretics as he's not got any spare flesh on him to lose at the moment.

As to how he's doing.  Well, he's certainly running through the available operations.  Today he had a lumbar puncture.  The medics learned an important lesson that if you remove a babys nappy and then try and fold him in two, it's likely to become a very messy sterile area.  Oops.  Some nastier bugs were found to be in his blood and so they needed to test the CSF mostly to determine how long the antibiotics needed to be administered.  If the CSF was bug-free then a weeks dose was sufficient, otherwise it would need to be 3 weeks.  The initial results are that it is bug free, but as with the blood tests, it'll probably be about 48hours before a definitive answer is given.  On the plus side, he is still on full feeds and (mostly) keeping them down and digesting them.  He's also back to the same ventilation pressures as he was before the infection albeit with supplemental oxygen.  One of the measures of inflammation\infection is the CRP.  This is a protein found in the blood and the greater the amount found can indicate the severity of the infection.  Dylan's CRP reached 163 on Thursday (from about 11) and is now dropping down again currently around 80.  So the fact that the infection was caught early and was treated with a wide range of antibiotics has helped and hopefully will kill the nasties sooner rather later.  Although to add to the amusement in our - well Dylans - room on the  ward one of the isolation babies is now there thus increasing our anxiety about what Dylan may accidently catch.  Especially as the poo that the Mother caught was more dribbly than usual.  All fun and games!


Friday - 23Mar12
The f***-up fairy has been visiting.  Not only is it expected that the femoral long-line is the cause of the infection (it might not be: it could just be a bug, maybe from me as I'm lurgied), but the line was removed overnight.  And the tip was discarded.  Which has got quite a lot of people irritated, not least the Mother.  The tip of the line would be an ideal place to test for infection.  Much better than blood.  Oops.  The consultant is furious and words have been said.  Especially as he gave strict instructions on what was to be done.  In fairness, even if he hadn't provided a plan in the case of  suspected septic line, you should never throw the tip away as it's the obvious place to test to see if there are nasties on it.

On the plus side, one of the registrars has managed to get vein access (two lines into his left wrist) just before we arrived in the morning.  He did say that he wanted to get them in before the Mother arrived.  I think she's getting a reputation!  Not in a bad way, but as she does know what's happening and whilst in the day job she doesn't deal with anyone smaller than her, she is an experienced consultant so I do find that I'm often lost in the conversations as it gets into medical terminology and drugs - it has almost got to the point where she's asked for her medical opinion.  Anyway back to the plot...  The new pereipheral lines will be used mostly for antibiotics.

So Dylan is back on oxygen, and they've increased the pressure that the air is being supplied at.  He's also been taken off food.  Both of these are to allow him to concentrate solely on dealing with the infection.  In fairness, if you hadn't known about the blood tests, he doesn't look that ill, he's dozier than normal but that's visually all there is.  His stomach and scar are both looking great.  As it turns out, the lack of food only lasted the morning and he had an intial feed at about 1pm of half his usual amount with a full feed for 3 hours later.  So, it looks like that once his infection is gone, then he won't have gone too far backwards.  Hopefully.

He had another x-ray this morning and this shows something on the good lung.  This could be pneumonia: he has an infection after all, or it could be water\liquid.  One of the effects of an infection in babys is leaky blood vessels.  It may be that this causes moisture to end up in the lungs which he can't get rid of because he's ventilated. 

Going back to the line tip.  He's being treated with a range of antibiotics and has been since yesterday.  But he's getting a lot to ensure that all possibilities are covered.  Clearly knowing what the bug is allows an appropriate drug response to be given - antibiotics can be very nasty.  Some bugs are nastier than others, at one point a lumbar puncture was suggested in order to determine whether the bug had the CSF (cerebro-spinal fluid) which could then cause meningitis. As it was, it was felt that he was too poorly to have one.  When I left to return to Taunton, an initial result from tests on the blood seemed to suggest that it was not one of these nasty bugs and something slightly more friendlier.

More cheerfully, the Cat at least got some of the food that I left out for him, and he's supplementing his diet with mice (he helpfully ate one in front of me), but here's a video of Dylan pre-infection without ventilator

 


Thursday - 22Mar12
A quiet couple of days down in Taunton (well, for me at least, the Mother stayed in Bristol).  I released the cat from prison (the cattery have been absolutely lovely: happy to recommend!) and back to sort the house out and make some practise cakes for the BTBs wedding.  One at least needs improvement, another seems to have come out well - it's hard to say as the Mother is desperate for the sugar rush and the nurses are cake starved so not exactly an impartial audience.  The cat seems happy enough and spent some of his release trying to sit on my head and mark the duvet cover with muddy paw prints.  Welcome home!

We're going to try and see how travelling between Taunton and Bristol every other day works out.  The reason for doing this is mostly to keep an eye on the house and to look after the cat.  He would be fine in the cattery: it's just that as the weather is nice it would be better for him to be out and about trying to reduce the local mammal population. Or sleeping on the sofa.

On my return this afternoon, things aren't looking quite so rosy for Dylan as when I left.  His feeds are increasing (this is real food through the stomach line) and the remaining drugs including the paracetamol are all oral.  His ventilation is all good and it is now just a question of reducing the pressure of air that is supplied to him to atmospheric pressure: we're just waiting for the lungs to be strong enough to support his breathing all the time.  Except.  The lovely line that they spent ages sorting out to be put in, and then spent ages procrastinating over whether to replace it or not has gone bad.  Oops.  And other such words.  So when I arrived, the Mother was looking somewhat harrassed as she'd watched them struggle to put in a new line (and fail) into Dylan for about 2 hours.  Clearly she hadn't said anything on the lines of "I told you so".  On the plus side, the intravenous feed was able to be stopped immediately as Dylan is almost on full feed anyway: this was the main reason for retaining the line as long as it was.  Now, however, the line although septic is being used to carry the antibiotics used to treat the infection.  Dylan was snoozing as he'd had enough for the day although the nurses were being cautious not to disturb him again in case he started crying.  But he's not having a good day really.  Mostly it's body temperature related - he has a fever - and this means his breath rate is all over the place and his heart is significantly higher than normal (tachypnoeic and tachycardic).  This is a set back.  We'll find out how much over the next couple of days, the medics are hoping it's a straightforward case of line infection in which case they're already doing everything, if not...


Tuesday - 20Mar12
A couple of quiet days.  Or rather that should probably be a couple of days of quiet progress.  Despite the tantrums, he's now off Morphine and he is now only getting his TPN (food) intravenously and at the current increase in the amount of Mother's Milk  that he's at, he'll stop that before the end of the week.  This means that the only tubes he'll have will be the ventilator (CPAP) and the stomach line.  His antibiotics have stopped and his diuretics are now taken orally rather than intravenously.  The paracetamol still goes up his bum (why?!).   As for the ventilation, that too is being weaned slowly down.  He's breathing air (no additional oxygen) but it's being made available at a higher pressure than atmosphere.  This just reduces the effort required to breathe.  The plan is simply to slowly decrease the pressure allowing his muscles to build up enough to be able to support (all of) his breathing efforts.  Even now, he can breathe without the use of the ventilator, just not for very long.   And not when he's screaming.  Well.  Trying to scream (have just picked the cat up from the cattery and yes, the cat is marginally louder). Unfortunately, I think all the photos that I have of him without the mask on he's either screwing up his eyes or screaming...

I'm reasonably confident that I've raised the subject before, but we are lucky with the diagnosis.  By this I mean that although we have had an "interesting" few months, we always knew what the problems were and what the outcomes would be from that be they good or bad.   There are many people who don't\didn't have the luxury of getting an early warning as we did, or even a diagnosis: they're just given a likelihood of problems and when those problems are manifest it may take weeks or months after baby is born for those problems to be resolved one way or another.  I'm not sure how much longer I could have stayed sane (and normal). 


Just heard.  He's pulled out his feeding tube again :)



Sunday - 18Mar12
We would just like to say thankyou.  To all of you.  We have received lots of cards, letters, texts, posts, emails of support, good wishes and luck and we know that many of you are offering up prayers to whoever will listen.  Whatever it is, it's clearly working, because he is doing well, far better than anyone (medical staff included) could have thought, and yes, it is a long healing process and things can and do go wrong, but today we are optimistic of a future with Dylan Henry Jones.  And that is a fabulous thing.  So thankyou all very much it is greatly appreciated and if you could continue for, say, another 16 years?!

So, I didn't forget that it was Mother's Day.  Or rather, I listened to Dylan who told me what he would like me to get the Mother given he's not allowed of hospital yet.  What was really lovely was a Mothers' Day card in each of the cots with a card and a photo of the relevant Bean inside.  Bless!

"They're taking my morphine away.  Not fair!"

 He has had an unhappy morning.  His breathing rate is erratic at times jumping between 40 and 120breaths per minute which is a little disconcerting.  Apparently this is normal for CDH babies and is likely to continue for a long while yet.  But mostly he's unhappy, not sure why but the consultant thinks it may be that his morphine dose has halved over the last 12 hours and its taking a while for him to get used to that.  He is still on morphine (and paracetamol - when the nurse can get the tablet up his bum - diuretics and antibiotics).  He's also getting some food intravenously as well.  On the other hand he's now breathing oxygen at amospheric levels and other than when he's having a paddy remains at good saturation levels

An alternative thought is that he's not actually unhappy, he can just hear his own voice now.  Thankfully even at full bore, it's not actually very loud.  The cat probably makes more of an effort than Dylan at the moment.

He's also continued yesterdays habit of removing lines.  He took his food line out (this goes through his mouth into his stomach) twice yesterday and this morning he removed one of the monitoring cables from his chest (the one blue dot in the photo above).  The food line has been altered so as to go through his nose, but the chest monitoring line has been abandoned.

There has also been a clear out of babies from our room.  We're in the "new" room which only has four beds in it; it's also for the sickest babies.  There are three other rooms each for increasing well babies.  It's a sign of how well Dylan is doing that if there was space Dylan would be moved to HDU (High Dependency Unit) which is the middle of the three rooms.

Dylan Henry Jones - Week 3

Saturday - 17Mar12

Go on, throw up over that nice white shirt!

Dylan has remained on the CPAP overnight, so that probably means that that will remain the case until his lungs improve sufficiently that the next level of ventilation support is used instead.  It's also felt that he needs a nice quiet weekend, so that means no heel pricks, minimal movement etc.  Which is convenient as there is an afternoon of rugby to watch!

Nurses are unconvinced by Dylan's Welsh heritage as is the Mother.  Pah!

We will try and get a mobile for Dylan's cot as when he's awake (as he was this morning) he's really alert and bright and something more interesting than the ceiling would probably entertain him.

His feed is up a bit more and seems to be digesting quite a bit of more.  Less of the the vomiting that marked yesterday! 


Right, now where's the Rugby!

"Oh, it's all too much"

On the Alien theme (Fridays photo), CPAP generates an awful lot of bubbles.  I know where Ridley Scott got the Alien slime from...

He's (Dylan that is, not Ridley Scott) is also having minor issues with keeping food down.  Having said earlier that he wasn't vomiting as often as Friday - see 6 whole lines earlier -  he clearly watched the England game and had the same opinion of it as I did: not the score, but the play was abysmal.  Either that or he wasn't terribly impressed with his dinner.  He threw up 3 times in quick succession.  I'll admit to not being the best around other peoples regurgitated food, but just about kept lunch down while cleaning up.  If nothing else, I thought that throwing up over my child would set a certain precedence.  Or getting my own back.  Early.














Friday - 16Mar12
At the ward round, more longline discussion and essentially it'll wait until next week, probably being reviewed on Monday.  A different discussion was on whether he was to extubated (again).  His current ventilation rates are nice and low which is promising that there is potential that he'll be ok on the new ventilation system.  This is Bubble CPAP: this maintains a constant pressure of air for his lungs should Dylan need it.  Rather than having a tube down his throat he has a mask over his nose. 

New invisible face hugger for Alien 5

When we hear that they're going to do it in the afternoon, we make ourselves scarce for a few hours.  Probably best.

As it turns out, when we return just after 6pm, Dylan has done marvellously well.  He's coping better with the CPAP than with the ventilator.  He's now on his front and seems quite comfortable.  Although he can now cry and scream.  Well kind of.  A squeeking perhaps rather than a cry!  Bless





Thursday - 15Mar12
Apparently the surgeons say that the femoral line that Dylan has is good for two weeks rather than one.  Not sure whether this corresponds to the fact that he can't go to surgery today as the emergency list is quite long.  Maybe tomorrow. (Friday).  Unless of course there's any sign of infection.  Hmm.  Not totally impressed by this or the thought of waiting until an infection happens before doing something.  On the other hand.  It's not an emergency (to change the line, so).

His left lung has also collapsed and part of the right lung so the physio is due to come round again to loosen things.  Having said that, his sats are all good so his lungs can work and the weight loss is perhaps doing what the medics said it would and makes the breathing easier.  He's also keeping his food down and digesting it which is all good.  Although he's also generating quite a bit of air (kept in the stomach - we know because his stomach is kept deflated).  And a proud moment, I think I can call myself a Dad as he's now wee'd over me (thankfully there was a waiting nappy otherwise I'd have got in trouble with the nurses).


Tuesday Wednesday - 14Mar12
Time passes.  Clearly.  I'd swear blind it's Tuesday today, but everyone else tells me otherwise.  At a guess, it's me that's wrong.  Oh well, not sure what happened there.


Nothing really happened yesterday (Tuesday).  Grandparents visited and we had a lovely evening out on the town with them.  It is nice to get out of the hospital and hopefully now that the Mother is feeling better and we have some sort of expressing regimen we'll be able to do it more.  Perhaps even getting out to Westonbirt briefly.  As far as Dylan goes - he had more time out of his cot - this time with Dad - and getting lots of stories.  But mostly he's stable.  Which is good.

"Hello"

Today (Wednesday) we had further conversations about lines.  The femoral line that he currently has is coming to the end of its normal life span and we would like it replaced during the day rather than like lastime which was a midnight emergency procedure on the ward.  Finally at the end of the day we were told that he will\should be getting the line replaced tomorrow (Thursday).  Other than that he's had a quiet day and it was another day of cuddles.  He's started his feeds again and this time he seems to be digesting his milk.  He's only getting 5ml a feed (rather than about 40ml for a "normal" baby).


The other interesting part was that he has spent time on his front (rather than his back).  Just to keep him moving.  He's also lost weight (overnight): not bad, I'm willing to sell his weight loss program for those interested!  But mostly today and yesterday - and presumably for many days to come - have just been about weaning him off the remaining drugs (morphine) and reducing his reliance on his ventilator.  On the plus side the course of antibiotics he is currently being given is to be stopped soon as there doesn't seem to be a worry (anymore).




Monday - 12Mar12
Came into see Dylan in the morning and got two shocks.  The first is he's sprouted an extra line from his head.  The second was the revelation that overnight one of the nurses has been reading to him.  That's MY job!!
The extra line is for antibiotics.  Once they've set up the femoral line, they don't really want to add to it as this increases the potential for infection.  Hence the new line.  He's on antibiotics because he may be getting an infection (but not from the line).  Being read to by the nurses is quite sweet to be honest.

His lungs are much free-er after the physio: they're still sucking out an awful lot of gunk from them but it's moving more easily.  Also, despite being off food for the last few days he did manage to throw-up.  His first.  Bright green.  Now there's a talent.

He's also clearly a Jones as the doctors have told him he's fat.  He's gained 1.2kg over two weeks.  Of this most of it is water.  Oedema.  There isn't a problem with it, but he does need to shift it and the ways to do that are either moving around (so he's had his morphine levels reduced so he can move around more), wee-ing lots (diuretics) or steroids (not yet considered).  There are probably other options but these are ones currently being considered\done.  It's felt (by the consultant - one of the nice ones again) that the extra bulk is one of the reasons why taking the tube out on Friday failed.  His muscles aren't strong enough for both shifting lungs and water.

They're also wanting to get a surgical line put in.  Deep Joy and Rapture.  In fairness, the femoral line will only last another few days after which it should be removed due to infection risks.  It is also likely that he will need vein access for longer than those few days.  So we don't have a problem with the procedure.  What we're concerned about is that the farce of last week will happen this week and then suddenly the femoral line will stop overnight and we'll be into an emergency overnight placing of a line.  Again.  Which is crap.  So we're going to try and be a bit more pushy and try and get it sorted sooner. <sigh>

Even more stories today.  We got a new one yesterday from some friends which is lots of fun.  However we were wondering what more we could do: we see Dylan several times a day, not necessarily for very long, but there's little interaction given that cuddling him can be tricky and nappy and wash are at set times of day (between 9 and 10 and then again 4  to 5'ish).  So we thought that if we read more stories to him he would at least know our voices.  So we have the classics.  Just So Stories, Grimm Fairy Tales and Hans Christian Anderson Fairy Tales.  The Grimm fairy tales really are.  I don't remember them being quite so dark.  But the nurses enjoyed listening to the Just So Stories at lunchtime.  Dylan didn't offer a preference.



Sunday - 11Mar12
Dylan is two weeks old.  We're getting there.  Slowly.

Birthday boy!

I'll try and  get some photos up to celebrate.  There are some lovely ones with him tucked up in blankets.
So, yesterdays physio seemed to do the trick with him not being too distressed over it but very wiped out.  Really sleepy.  So rather than repeat the experience that evening he's getting some more at lunchtime today (Sunday).
Other than that it's been a quiet time.  Waiting for things to happen and him to tolerate better the removal of drugs and tubes.  Frustrating too.
On the plus side we did manage to get out onto the Downs with BTB and her boy briefly between lunch, visitors and expressing.  Expressing probably being the biggest priority for the Mother at the moment.  Nice to get out in the sun.

Dylan Henry Jones - Week 2

Saturday - 10Mar12
His veins are really not very good.  The arterial line that had been put in a few days ago gave up the ghost early this morning.  A reasonably unsettled night, so his painkillers have been switched back from Fentanyl to Morphine (partly because of the high levels but also because it's felt that he prefers it).  Another reason for his unsettledness is that his right lung has partially collapsed.  Possibly due to the change in ventilation, but last nights xray looked ok.  Either way, there is a lot of gunk within his lungs so he's been giving drugs to loosen that up and a physio is turning up at lunchtime to shake everything up and loosen everything.  Just to add to the fun he's getting a rash.  Poor little man.

In fairness it's probably far worse for us than it is for him.  No one is worried about what has happened it's just what we need to expect and although we know it's going to be a long healing process, the steps he has made had perhaps given us hope of being able to bring him home sooner rather than later and that means any steps back are harder to take because of that.

Lots of visitors due this afternoon.  BTB and her boy are coming for a visit as is one of my brothers and his wife (and children).  Unfortunately the children won't be able to visit.  Hopefully they'll all arrive after the Wales game and I can deposit BTB in front of the Scotland game.  I'm sure they'll be happy especially as the local (Robin Hood) has a cider festival on!



Friday - 09Mar12
Hard to describe today.  Dylan has been awake and busy.  Mostly busy trying to remove his ventilator.  He's been doing really well with really low painkillers and ventilation levels which mean that the tube could come out and he be put on a different form of ventilation.  At one point he got so active that the nurse looking after him got the alternative ventilation system ready just in case he took matters into his own hands.
However, he remained good and during the ward round it was decided to remove the tube and to see what would happen.  As it turns out, he might be ready for the tube to be removed, but apparently his lungs disagree.  So he had to be re-intubated and he's gone back several steps in terms of increased pain relief and ventilation.  This is to be expected.  Further attempts will be made after the weekend once he's returned to low levels of pain and ventilation relief as he's been very unsettled.

On the feeding front he hasn't been so good, he hasn't really accepted the Mothers' milk - or rather his stomach isn't ready to accept the Mothers milk.  It's also been several days since he's had a poo so he's had to be given a glycerine suppository and he really doesn't like that!  

We're not impressed with the current consultant.  He's probably very good, but we just don't get on with him.  He's brusque to the point of rudeness.


Thursday - 08Mar12
Midnight: I wasn't expecting that sort of call for another 16 or so years, possibly when he too has a motorbike and learns a valuable lesson about Newton's Laws of Motion but more importantly that overtaking at a crossroads is not cunning.  Anyway, the conversation went something like:
nurse: "Is that Dylan's Dad"
me: "yes"
nurse: "Now there's no need to panic but..."
Anyway, what had happened was that his peripheral lines had all given up the ghost, they were struggling to replace them and so an anaesthetist had been called to put in a longline.  On the ward rather than in theatre (it was midnight so couldn't really call the ambulance or lose staff from the ward for reasons of patient safety).
The anaesthetist had to have two goes before getting in a femoral line.  It's not the best line to put in as it's more prone to infection than a neck line, but it should only be in for 5 or so days.  On the plus side, no need to get up early to see the surgeons and he can at least get full dose food.

An unsettling start.  There is a rotation of doctors across hospitals in the South West.  This is all part of their training process (from SHO to Registrar).  So we say goodbye to a lovely ST2 and a whole new bunch arrive and are induced.  Obviously in a different way to the Mother.  As part of this induction, they are shown how to take blood from an arterial line doo-dob (technical term describing the pot mechanism that allows them to take blood easily).  I appreciate that this is important training and don't really have a problem that Dylan is the subject.  I didn't particularly like the way the Sister giving the demonstrating pretty much ignored - or gave the impression of ignoring - the fact the Dylan's heart rate was plummeting and his breathing wasn't so good.  I really wish that I hadn't witnessed that.  It does worry me what we do miss given that we are not by his bed 24 hours a day.

But mostly Dylan has had a very quiet day.  For the first time he was given the Mother's milk (well the first stage - colostrum ) which didn't really go down very well.  Oh well it's a start!  He's also being weaned off the ventilator with the view to take the ventilator tube out in the next day or so.  He'll get a different form of ventilation which won't involve the tube (CPAP).  The Mother is unconvinced as to whether Dylan will tolerate that either.  He has his father's tolerance clearly.

Tomorrow is a big day as he goes for surgery first thing in the morning.  Well, goes to see the anaesethetist who will attempt to put in a longline.  Hopefully this will pass without note, and Dylan can get feed properly for the first time.


Wednesday - 07Mar12
Dylan has been very naughty - pretty impressive for someone bed bound on a ventilator with lots of tubes attached to him!  He pulled out his stomach line.  Probably in a fit of pique.  This is the line that keeps his stomach deflated and is also used to measure how much bile he's producing.  This determines when he will be allowed food (real food - which the Mother is generating at regular intervals and is currently generating her own little milk lake).

This one is trouble.

There were further discussions on longlines.  Problem of having no real continuity between people looking after him (this is nothing to do with the standard of care that he's receiving - just that as new people come in, as parents you tend to have the same discussions).  So, this time todays registrar has found a nice vein in his leg which he things will do the job.  He's reluctant to send Dylan for surgery due to the risks of the surgery as well as the need to transport him.  Somewhat reluctantly we agree.  The plan is that he will attempt to get a longline into Dylan through the vein he's found in his leg (which ends up in his abdomen - this is a tube roughly 25cm in length that is fed through the vein).  Dylan will be given extra sedation and paralysed in order to minimise his discomfort.

A few hours later we get a phone call from the registrar saying that it hadn't worked.  He had only managed to feed 8cm's worth of line through.  So surgery it is.  No real idea of when this will be - it's in the hands of the aneasthetists.  Deep unabiding joy.

When it gets to story time, Dylan is really not terribly happy: he's struggling for breath and his heart rate is all over the place.  It turns out that his ventilator tube has slipped 5mm or so.  This is enough to cause part of the right lung to collapse.  Given that's the working one that's not ideal so the tube is re-positioned and the difference is both marked and almost instanteous.  Quite incredible.


Tuesday - 06Mar12 
Today was a quieter day.  He's still an angry little boy and doesn't like being disturbed by the medics.  And they have taken note and are giving him a sedative bonus whenever they are about to do anything to him.  Also, now he has an arterial line back in so that means the heel pricks have stopped.

We had a very useful meeting with the consultant during the ward round - the joy of being the only parents there for any of the beans in the room.  She seems really happy with his progress so far.  As far as the long-line goes if it is to be done under surgery then there are two options depending on how long the line needs to be in for.  It is expected that it will only need to be in for a short period of time and so the entrance point of the line will stick out from his body rather than being tunnelled.  The former is potentially a point of infection but given that it's not expected to be in for very long that's unlikely to be a problem.  It only needs to be in long enough for him to be able to tolerate food in his stomach rather than intravenously, but he needs full-strength intravenous food which can't be applied to peripheral veins.

Pulmonary Hypertension - when beans are in utero they don't need their lungs.  Thus the body decides not to waste time by pumping blood to them.  This is achieved by using higher blood pressures and the veins (in the lungs) as a result of this clamping down and stopping the blood flow.  Dylan is still doing this when he gets upset.  This is common even in beans who don't have CDH and is an ability that fades over time.



Monday - 05Mar12
Today is a two-step back day.

Marks from longline attempts

Two more attempts have been made to get a long line in. We witnessed the last one. It's too much. It's gone beyond the point where other options should be considered. Finally it looks like the medics agree and surgery will be discussed (to get a line in). Obviously there are the attendent risks that go with any surgery but they're not going to get a line in any other way. And no line means no food.

Also witnessed, was the heel prick procedure. It's horrible to watch. Dylan scrunches his face with pain, opening his mouth to scream (which he can't, because of the tube) and waves his arms around and his sats (oxygen levels) plummet so they have to boost his oxygen and morphine because his blood tests are poor and from our point of view this is because he's being handled and disturbed and filled with needles. You can't even give him a cuddle to comfort him. And then between stories they were trying to improve his sats by cleaning out his lungs and airhose. This causes his heart rate to halve and is just generally very disturbing to watch.

Yes - to quote Dirk Gently - we're having the sort of day that would make Mother Theresa kick babies.

In actuality, he's probably no worse than he's ever been. But it feels like we're going backwards. Saying that, there is a problem with today, the consultant thinks that the sudden drop in sats when Dylan's distressed is because of pulmonary hypertension. Which explains the behaviour of the measurements. This is bad and needs to be controlled. So overnight we understand that he will be given a sedative to calm him down and also that they will try and replace the arterial line. This will mean the heel pricks will stop, reducing his distress. It also means that they will be able to measure his blood pressure consistently which they haven't been able to do since the old line stopped working on Saturday.

Here's hoping that tomorrow is better.

Sunday - 04Mar12
Dylan is a week old!
Wow!
Would not have believed that - or that he has done as well as he has.  Quite incredible.

However, it's clear that we're now into slow-time.  This is the time where Dylan learns how to breathe and how to eat.  We know this from listening to the consultants at the ward round (each set of parents are allowed into the discussion for their child but not anyone elses).  Occasionally this means getting up early (730'ish during the week or 830'ish at the weekend) but more normally 2pm.  Dylan hasn't really progressed with his breathing (in terms of them changing rates on the ventilator or on the amount of oxygen he's getting) and they're keen that he does - as are we.  At the point he comes off the ventilator he moves room - out of ICU into HDU (High-Dependency).  Which is progress.  The painkillers are reducing and the types of painkiller are also changing - he's getting paracetamol as well as the morpine.  But getting him breathing would be better.  So they are going to change the type of ventilation as well as the rates and see how he copes with it.  Everything else is fine - but he's not improving.  We are looking at least a further 4 weeks before he could come home but could easily be double that (and then some).

Dylan needs an arterial line from which the blood pressure is measured, but also it's a single point from which blood can be taken. The principal reason for blood is to check the gas content which is a regular test (every 4hours or so). This line was peripheral (wrist). Overnight it stopped working and was taken out: well it had been in almost a week. So a new method of measuring blood pressure needs to be used, but also blood is now taken using heel pricks and the gas calculations are now different as are the numbers - not necessarily badly. Just different. Which makes comparisons difficult.  He really is becoming a pincushion. However, the inability to get a new arterial line in is comparatively trivial to getting a longline in. The arterial line is for monitoring, whereas the long-line is for drugs and intravenous feed (TPN). Furthermore, full strength TPN can't be given peripherally. At the moment he even has lines going into veins in his head. I get the impression that the medical staff are not totally impressed with the surgeons in bringing back Dylan without a long-line.

A number of people have contacted me (rather than the Mother).  An apology for either slow response or lack of response - things get lost amongst the vast quantity of junk mail (mostly from Amazon) and I'm not clearing them out quite so enthusiastically.

Dylan Henry Jones - Week 1

Saturday - 03Mar12
Minor update to what is described below.  In fact the diapragm isn't really a single sheet: it's two.  So it's the left diaphragm that's missing and that has since been replaced.  There is a risk  of scoliosis (as he could grow lopsided as the new diaphragm is pinned to his ribs on the left side) and also chest deformities for the same reason.

First cuddle for Dylan and the Mother

Overnight it was one of firsts.  The first of three poohs on Saturday (this is good because it means that his internal organs are working), a small vomit and a cuddle.  Clearly all the tubes and ventialtion are still attached and it's the nurses who left him out if his cot onto your lap, but proud moments for the Mother and me.

He does have his fathers's stranglers hands and prehensile feet (big ones too).  Although they are both looking rather like pincushions much to the Mothers' distress.  He went into surgery with an arterial line in his wrist and a central (long) line through the umbilicus.  He didn't come back with the longline (they had to move the existing one for the surgery).  This is turning out to be a problem and probably causes the Mother more distress than me.  No doubt they expected that putting in a new line would be relatively easy and could be done back on the ward.  In practise this is turning out to be trickier than normal.  What this means is that all the drugs and the food have to go through small veins on the periphery which is less than ideal to say the least.  The Mother is deeply unhappy about this, not just for the short term (Dylan is now a pincushion) but also the long-term difficulties and what sort of state his veins will be in given that he will be needing blood tests etc for a long time yet.

Aww, he's got hold of my finger

It's also interesting what bother the Mother being medical, and what bothers me who isn't.  Being in a hospital is normal for the Mother as are all the alarms and beeps that are a continuous background especially in NICU.  They really get to me, I don't like being kept in.  On the other hand, the lack of long-line doens't really bother me (other than the whole pinchusion effect), I accept (more) the medics word that actually it's ok - not ideal but perfectly ok.
 

Friday Update Pt 2
Dylan got back from surgery at about 1700. We got to speak to the surgeon about an hour later. She seemed pleased with the way the surgery had gone. They had had to put a patch in as there was virtually no diaphragm to speak of which is what we were expecting. What this means is that Dylan will breathe only through the muscle effect of his lungs as his new diaphragm is non-muscular. The stomach, liver, bowel were all shifted back into their appropriate place and there was no cause for concern. They also took out his appendix. This is mostly because they can't really control where it may end up which would only cause confusions in later life should anyone try to find it.

He was on air only when he returned but became unhappy so they increased his oxygen intake and put him on morphine. There were also problems with his saturation levels: these were cleared up by change of position and clearing out tubes and mouth (he can't swallow at the moment).

Dylan's scar

Overnight they need to put in a line into the central circulation system in order to keep feeding him drugs. For the surgery they use lines that go into smaller vessels: this allows the belly area free to be cut into. Speaking of which, I am faintly disappointed with the scar. I was expecting flip-top baby. How's he going to attract the girls now? Everyone knows chicks dig scars ...

And yet again, we wait. To see what happens next, whether he's strong enough to recover from the surgery, whether anything gets infected and whether his lungs will do the job and he can learn how to breathe.

Friday Update Pt 1
All change its 1310 and Dylan is going to surgery. Less notice than we had thought. About 30 minutes in this case. Even the nurse looking after him was surprised. He'll be at the BCH for 1330 with the surgery taking place this afternoon. Hopefully he'll come back ok later on this afternoon or this evening.

Friday - 02Mar12
He opened his eyes properly. Even at 730 in the morning. Clearly he doesn't take after his mother.

"Oh my God who are you?!"

 In reality, the Mother has been expressing every 3hours, so comments like that will get me into serious trouble.  The reason for the early start is that we needed to meet the surgeons.

What is the collective noun for a bunch of surgeons?  Anyway in they all walked (about 10 of them) to discuss whether baby Dylan is ready for surgery.  Ha! Only ten of them?! Where's the film crew....

Unfortunately moments earlier one of the surgeons had noticed that Dylan doesn't like his Dopamine altered and reacts to changes in levels quite quickly.  Things like that make them nervous and it's best not to do that to them.  After the briefest of conversations, out they swept onto the next patient.

The consultant surgeon then returned with the consultant neo-natologist to have a further conversation with us about what they were going to do and when.  They're going to open him up, move everything back into the abdomen checking for twists and defects and fixing where appropriate.  They'll either suture close the defect in the diaphragm or patch.  If the patch, then they use Permacol which is pig-skin (or a derivative) which they think works better than artificial patches.

Arrows where the surgeons mark the operative site

They don't entirely know when it will happen: the number of drugs needs to reduce and he needs to be off either the Dopamine or the Dobutamine.  We'll also get little warning on exactly when it will happen.  Saying that, the decision on whether the surgery will be performed will be taken in the morning or at lunchtime each day.  Certainly we are expecting it to happen over the weekend and the fact that the surgeons have marked Dylan with incision points - clearly anatomy is not their strong point and neither is knowing their left or right.  Hmm, perhaps I should retrain as a surgeon!  One of the first decisions I have had to make as father is to give my consent for the surgery.  It's an easy decision to make, but certainly one that gives plenty of concern.

We are very aware of how lucky we are.  Not in just in terms of how well Dylan is doing but also the fact that we are in a position where we can both be around to support him without worrying about the bills too much.  That and we do have a fantstic network of friends and family whose support has been magnificent and invaluable.  One of the facts of the ward is that there are sicker babies within NICU, for families who are in very different situations to us, which is both very sobering and humbling.

We have also benefited from a number of charities all of whom do fantastic work and we hope to be able to support them in some way once the initial problems are over.


Thursday - 01Mar12
Dylan has given his father his first heart attack. It was time for the evening clean-up and nappy change. Oh, and story time of course! Today he hasn't been weeing very much and his belly was distended. It appears that that's because it was full of wee. 55ml of wee which in a 5 and a half pound baby is really rather a lot. That'll explain yesterdays swelling!  Unfortunately for him, we found this out by putting in a catheter. His second in four days. He's also on a new drug which replaces the morphine and the atracurium which sedated and paralysed him. He's quite lively on the new drug - just muscle spasms. Anyway, he didn't appreciate the catheter and woke up. Which is BAD. Because he starts to try and breathe for himself. And he can't. He went blue, heart rate plummeted, and all we could do was to try and calm him so that he went back under again. Thankfully he did and was then given more drugs to make sure he didn't try that again.
Nappy has been put on really badly (by me).

On a much more positive note, this is just a blip.  A dip in the rollercoaster.  Because he's continuing to do very well.  The drain used to empty his belly of gases has been removed and the remaining drugs are reducing slowly.  The Mother and I need to get up and acroos to the ward for 7:30am in order to meet the surgeons.  Hopefully they will operate tomorrow (Friday) but that does depend on space and his progress.  It's probably better that the operation happens sooner rather than later as the longer he's connected to tubes the greater the likelihood of infection.  That's just the way it works.

Also, we can really start to relate to him - we can touch him, comfort him.  No hugs for Dylan yet, but it is a start.

We have been asked to leave the NICU accommodation.  This is because there is space in the Ronald McDonald house and the NICU room is better used by a family whose baby is doing worse than ours.  We may get moved back after the surgery as then it'll be our baby who's doing badly.


Wednesday - 29Feb12
Arrive back at the hospital in the morning to find that Dylan is still doing really well.  Now he's off the nitrous gases and onto 25% oxygen which is the level that they would want him to be on if he went into surgery.  Again the other drugs are also coming down in level.  He's certainly a fighter!

The plan at the moment is that the drain will be removed tomorrow (Thursday) with surgery planned for Friday or Saturday depending on how well he continues to do, availability of surgeons, bedspace etc.  The surgery will take place at the childrens hospital so he will be moved from NICU for the surgery and then brought back.  He'll be away for about 4 or so hours.  We won't be able to be with him.

There continues to be difficulty with accommodation.  Nominally we would be allocated a  space in hospital accommodation; however there are only a limited number of spaces shared between NICU and the childrens hospital.  One of the aims of the Cots for Tots Grand Appeal is to help with this by building more parent accommodation for NICU patients.  By 5pm we haven't heard anything so I book a superior room at The Clifton House Hotel (it's larger than a standard and includes a sofa - plenty of space for the Mother to relax and feel comfortable in) and walk down to pick up the key.  Having done that, I then get told that actually there is a room.  The hotel is very good about it.  There is nothing to be done it's just the nature of the beast - rooms are very dependent on parents thinking that they will want them and the patients doing well or badly.

I get back at 6:30'ish to help clean Dylan up and change his nappy.  Doesn't seem quite as happy as he was - he's sore from the catheter and there is an abdominal swelling and his eyes are looking puffy.  Yes, we are paranoid.

We're waiting for the rollercoaster to begin - which might never happen - but is likely.  Certainly after the surgery it is expected that he will be a much sicker baby and the four days after the surgery will be nerve-wracking.

On a more positive note the Mother is producing milk - which is then frozen - and although it's only a room we are currently only down the corridor from Dylan


Tuesday - 28Feb12
Dylan continues to do really well.  He's been taken off the oscillator and is now on standard ventilation.

The Mother on the other hand is doing less well.  She was meant to have been discharged but given she essentially collapsed whilst seeing Dylan in the afternoon and had to be wheeled back to the ward in a chair they agreed, somewhat reluctantly, that perhaps she wasn't ready to go home just yet.

The Mother's best friend arrives from London for a flying visit and BTB finally makes it home ater a sterling four days effort.  She has been amazing.

As Dylan was doing well and didn't really have anywhere to stay, I decided to go back to Taunton.  Unfortunately the World doesn't stop turning, there are always bills to pay and things to sort.  Or in this case, a car to empty!  I must have been looking pretty bad for the guy in the petrol station to comment that I was looking rough.  Gee thanks!


Monday - 27Feb12

The Mother and Dylan surrounded by all the equipment keeping

him alive

Finally, we got a night of sleep.  No way near enough, but starting to claw back the cost of the last few days.  Obviously the Mother has a greater need for sleep than me!

It's clear that the ward are unhappy with the thought of me staying an extra night.  Although I have friends who are more than willing and happy to put me up, they are 10 to 15 minutes away by car and that's just a little too far to be comfortable at the moment.

BTB had stayed at a very nice hotel over night and I met her in town as, because we had a Dylan in our lives, the Mother needed a few things.  Like bras and tops that allowed - if not feeding - at least access for pumps.  Clearly I needed a treat too.  So I bought myself a new jacket.  Clearly I deserved it!

Dylan was doing really well and the oxygen and nitrous levels were dropping at a sufficient rate that there was already talk of taking him off the oscillatory ventilator and replacing it with a more standard form.  This would be a requirement for surgery as Dylan would be transported to a different hospital.

Dylan, stable with stomach deflated.

The IM visited the Mother to see how she was healing and provided information and products to help with the healing process.

Because there was a difficulty with me staying on the ward and we had made an error of timings with BTBs trains, BTB and I stayed at The Clifton House Hotel.  Top notch.  Very comfortable, quiet and with a rather fine breakfast!

The grandparents got to see Dylan in the afternoon.  We had wanted them to visit earlier rather than later on the off-chance that it would be the only opportunity for them to see him.  One set did manage to lose their car in Bristol which took a while to locate.  On the plus side, I have found more places to park in Bristol that I would never have found otherwise!

Gaston with knitted socks and hat, none of which Dylan can yet have

Due to infection risk, the number of tubes and some weird story involving finger tip loss and woollen gloves, Dylan can't get to meet Gaston the giraffe - a present for the Mother - or recieve the socks and hat made for him by BTB and the Mother's mother.

The Arrival of Dylan Henry Jones - Sunday 26th Feb

"It Feels Really Lovely Down There"
I can't recommend waking up, sleep deprived, to the sound of screaming.  Especially when it's your wife doing the screaming.  It was about 5am.

The induction drug is a particularly blunt tool.  It doesn't wait for the cervix to soften.  It starts hard and fast rather than a more gradual build-up.  It's kind of like trying to kick a door in rather than knocking politely and using the handle.  So clearly it's going to hurt.  Lots.  Or that should probably be lots more than normal.

I don't know, perhaps if we'd practised with the hypno-birthing stuff more it would have been easier or different, but frankly it was horrible.  F**king horrible.  I have never felt more useless in my life.  It's clear why they used to send the bloke to the pub.

Thankfully, after what seemed like an eternity later, the epidural arrived  That in itself is a tricky operation given that mistakes with a needle going into the spine are going to be life changing to say the least.  So the patient is meant to be still for up to 10 minutes.  Not easy when the contractions are coming quicker than that.  The epidural also works better when it's not leaking onto the floor. but by about 8:30 am there was sufficient pain relief for the syntocinol to be re-administered.

By about 10am progress was good with an internal examination leaving the midwife - who was fantastic - in raptures.
"It's about 4cm dilated but in a contraction it goes to about 6cm.  It feels really lovely down there"

The BTB arrived just shy of 11am and we were given leave to go and get some coffee and breakfast on the premise that nothing was likely to happen for several hours.  Bare in mind that it was expected that bean would be making an appearance late afternoon possibly early evening given the timescales that we were working to.  Our Independent Midwife (IM) had arrived at about 7:30 - another person who'd been having an eventful weekend with hospital visits - not just ours - vets etc.!).

About half an hour I get a phone call from IM to suggest that maybe I might want to return as "things were looking good" (ie fully dilated).  As it happens it's a good thing we were only round the corner.

I walked into the room and carnage occured.  Bean's heart rate was dropping too low and staying too low.   Beans heart rate falls and rises in time with the contractions.  This time it was falling and not coming back up.  He needed to come out and quickly.

The neonatologist team putting in airways and ng lines into bean

Suddenly, people came through the door.  Not in a rush as such, but quietly, efficiently and with purpose.  The NICU team - consultant in two - arrived within 5 minutes of the call being made.  Very quickly it had gone from 3 to about 20.

Forceps and two pushes were all it took.  Out flew beanie.  So quick in fact that the original plan of paralysis and sedation on presentation of the shoulder fell by the wayside.  He came out too quickly.  It was ll:50.  Bloody hell.  I'm a Dad.

Within 10 minutes or so bean - or Dylan Henry Jones as we would now know him - was fully tubed and taken into ICU.

At about 4pm, we finally got to see him.  IM had left the building at this point only BTB, the Mother and I remained.  The Mother had to be taken across in a trolley as she was very tired and sick.

The Mother with Dylan

So many tubes, so much equipment.  But he was stable.
Unfortunately, there was an additional problem: there were gases in the abdominal chamber.  This means that something is perforated.  It could be gastric (bad) or lungs (good - comparitively).  It was unclear and no real way of knowing for the near term.

Dylan Henry was on a nice cocktail of:
Heparin - blood thinner on an arterial line so that they can easily take blood without turning him into a pin cushion
Atrecurium - which keeps him paralysed
Dobutamine and Dopamine - both used for keeping his blood pressure under control
Morphine - for pain relief
Additionally there were lines for food types which are intravenous rather than gastric as the stomach needs to be kept deflated to allow the lungs to grow.

For ventilation he's on a mix of high-oxygenated gas with nitrogen compounds which help the oxygen-blood transfer into the lungs.  He would have started on about 95% oxygen but when we saw him he was already down to about 65%.  The air we breathe runs at about 21% oxygen.

The rollercoaster has started.

The first visitors had also appeared - the grandparents - both sets - arrived whilst BTB were out getting some food and a pint.  The pint on reflection being a bad idea.  The Mother by this time had been moved to a ward and as a special treat I was allowed to stay in the same room.  On the floor, obviously.

The Arrival of Dylan Henry Jones - Saturday 25th Feb

"You're Going To Make Me Miss The Game Aren't You?"
Tea and toast seems to be the staple diet in maternity wards.  But did it have to arrive so damn early in the morning?  Clearly it was too early for me as I mistook the instant coffee grounds to be all the coffee for a mug rather than some coffee from which I could choose to take enough.  Failed to make a cup of coffee that was drinkable.  Not the best sign for coherent thought.

Contractions had pretty much stopped by this point: they had scaled down from once every five minutes to once every hour or so.  After a long period of time - well we did get up very early - we say the consultant.  His view was that nothing was going to happen fo a while and that if we hadn't had a CDH baby and were local we'd be going home, with the CDH baby we'd be sent to the ward and re-assessed in four or so hours.  Or we could go to Bristol on the proviso that they had space for us.  They did, so we decided to make a run for it.  If things got tricky we could always head for Birmingham.  BTB by this time had driven back into Manchester and drove us down to Bristol at a rather fast pace (in my car).  The Mother stretched out on the back seat as much as possible with vast quantities of absorbent material.  The speed of the journey certainly surprised the satnav as we arrived 30 minutes earlier than it predicted.  The longest time was waiting for the car to get from the carpark to the reception of the hospital in Manchester a journey that should have taken a minute but seemed to take an hour as the lack of signage, the building work and the barriers meant that there wasn't a sensible route between the two..

We arrived at Bristol just shy of 4pm or about 2 and half hours after we left St Marys.  For those of you interested in such things, there was quite an important rugby match that the Mother and I both had vested interest in: Wales v England.  Clearly heading to the pub to catch the game wouldn't go down terribly well with the Mother but mostly because she'd still miss the game.  Had to make do with the BBC updates.  Thank God for 3G.

It was a long afternoon where mostly nothing happened other than conversations with midwives, registrars and so on.  On the plus side, whenever Wales scored, bean moved.  And Wales won, which kept me happy.  The Mother on the otherhand...

Eventually, after many discussions, it was decided that the Mother should be induced ASAP.  Given it's the NHS in practise that turned out to be 4 hours later.  The reason for the induction sooner rather than later ( in theory bean could have stayed inside for longer ) was partly due to procedure policies, risk of infection but as much because there was little benefit to him staying inside for much longer: an extra day would make little difference to either his growth or lung maturation.

In the meantime there were things to sort out at the home as the induction plan meant that we would be at home irregularly for an indeterminate length of time.  On the top of the list was the Cat.  We also had to pick up the TENS machine and a few other items that we had forgotten or just not bothered to throw in the back of the car.  So at 11:30pm (ish) BTB and I drove to Taunton and sorted things out and then drove back making a minor detour to drop BTB off at a friends house so that she at least would be able to catch up on sleep.  I got back to the hospital at 2am.

Whilst I had been away, the Mother had been moved to a different room.  On arrival, the TENS machine was produced and fitted, the Mother was given Syntocinol which would start the induction process and I fell unconcious on the bed (well the Mother wasn't using it!).

The Arrival of Dylan Henry Jones - Friday 24th Feb

Can I Go For a Poo Now?
So at 36 weeks with a planned induction 2 and half weeks later, we (well the Mother) felt that it was safe to head North to visit the Bride-To-Be (BTB) in order that I could start my bridesmaid duties, make some wedding cake decisions - taking along samples, obviously - and also to allow the Mother and BTB to play with make-up and facials and samples.  Besides, first babies are always late aren't they!

Having had a very pleasant afternoon in House Of Fraser we got to BTB's house for just after 6 - just right for tea and cake and chat.  Barely having sat down and finished her cake when the Mother jumps up and heads for the toilet.   Note the word "jump" in that sentence.  Not commonly associated with a heavily pregnant woman.  It was 7pm.
Me: "... is everything ok?"
Mother: "...umm, not totally"
A very short time later
Mother: "I think my waters have broken"
Me: "Oh"
Mother: "And I need a poo but I'm too scared to push..."
Phone calls to Bristol told us to go to the nearest hospital.  The nearest to New Mills is Stepping Hill which has a maternity unit.  Not really what we needed if bean decided to make an appearance.  The nearest tertiary centre is St Mary's in Manchester.  After phoning Stepping Hill, they agreed with our thoughts and talked to St Marys to ensure that there was space for us and that we would be welcome.  Then the ambulance was called.  Well, I didn't want to get the car dirty! (joke).

The decision was that we'd go by ambulance to St Marys, and BTB would follow in the Focus as that had stuff we would need should bean make an appearance, allowing me to be in the ambulance with the Mother and also making sure that the car was where we were.  See, not so disorganised as to not have the hospital bag packed and in the car!

The joys of PCTs and the NHS.  We were picked up by East Midlands Ambulance Service - they don't normally go into Manchester as it's out of their boundary.  They would normally take us to Stepping Hill for examination and then Stepping Hill would refer us to the appropriate location.  We thought that that was a bad plan which is why we had made arrangements to go to St Marys.  The ambulance crew checked with their controller who agreed and so off we went.  Given that they had never been to St Marys, the ambulance crew phoned up the hospital to get their location and confirm that they were expecting us.  They said no, go to Stepping Hill.  There was no room at the inn.  We were halfway down the A6.

So there we were in the back of an ambulance, parked on the side of the road with the Mother rather distressed and scared, the the ambulance crew hacked off whilst various people higher up the food chain made decisions around us. It didn't help anyones humour that over a 30 minute period, the ambulance crew couldn't get through to the triage nurse at St Marys because it was permanently engaged.   The BTB had caught us up at this point and had parked behind the ambulance.  After 45 minutes, a decision was finally made.  We were to go (back) to Stepping Hill with blues and twos due to the length of time the faffing had taken:
Paramedic: "I have to tell you to tell your friend that she's not to try and keep up or jump red lights"
BTB was so disappointed.
A few moments later, a call came through.  No, you are going to St Mary's after all.  So we turned around again and headed back towards Manchester.  Not that the ambulance crew knew where they were going - after all it's not their area, but Google does.  If only they weren't still building bits of it.

Finally after asking directions we made it to triage where we were met by a most obstreperous and unfriendly midwife (well that's what it felt like).  She and one of the ambulance crews had one of those conversations where on the top both are justifying their actions whilst the undercurrent says "you've not heard the last of this".  Frankly I just wanted the Mother admitted and seen to.  I was very good and didn't scream at anyone (I don't think I swore all evening which must be a record).

 We were told to wait.  The Mother meanwhile was leaking enough water to supply the South-East for the next month and had been for almost two hours.  It was 9 o'clock.  The contractions started.  And still we waited.

After what seemed like several days (but was probably only half an hour), we were seen by the first of several lovely people of varying levels of seniority.  With the registrar arriving before 10pm to confirm that yes indeed the waters had broken and, finally, the Mother was allowed her poo.

They moved us to a delivery suite where the Mother was hooked up to the usual monitoring equipment to check beans condition.  The neonatologist registrar came across and explained what they would normally do in CDH cases - it's pretty much the same as Bristol, the variations being that the consultant would not normally be present and that the baby wouldn't ordinarily be paralysed only sedated.  BTB and I got shown NICU and it was very new and shiny and swish.  It did look very good and it was clear that they were more than capable of looking after us.  In the meantime we had also managed to persuade them to give the Mother steroids.  It is undecided whether these help with lung maturation but they wouldn't do any harm.  We were going to get them the following week in Taunton just in case bean came early.  St Mary's were less than convinced that they would actually be of any benefit, but they wouldn't harm.  The steroids are administered in two doses 12hours apart by injection.  Into the bottom.  Worse than the amnio needle apparently.

Once past the desk Manchester were lovely and helpful, they found a mattress for me once they realised that I was going to sleep on the floor (creme eggs are great for bribing nurses) and BTB went home at about 1am in may car.  Hopefully without getting any more speeding tickets.