Dylan Henry Jones - Week 9

Wednesday - 25Apr12
Oh dear.  Is this the mind of a sane woman, going out into town and leaving me in sole charge of Dylan with nothing more than a room full of (unused) nappies and a freezer full of milk?  Only for an hour or so, but still!

On the plus side, verified that nappies do indeed make a cheap alternative to logs when the fire is nice and hot.  Just make sure that the door is closed.



Tuesday - 24Apr12
Some news to catch up on!  At the end of last week, we had a breast feeding lady come round to see if there was anything that could be helped with Dylan's feeding habits.  This was suggested and arranged by the health visitor, and as it happens, yes there is!  Some new positions were suggested (Dylan sitting up, rather than lying down) but more importantly was that it turns that Dylan had a minor tongue tie.  A tongue tie is a tight piece of skin connecting the floor of the mouth to the tongue.  Somehow, we got an appointment with a doctor to fix it (the tie is snipped) the same day.  It seems to have made a slight difference to the pain the Mother feels when feeding.  As someone has commented  "[breast feeding is] like someone slicing your nipples with a razor".

out to buy more nappies...

Other than that, we're whipping through nappies at a rate of knots - helped by Dylan deciding that he likes screaming so much that he wants to experience nappy changing twice just to continue his lung development!  He also doesn't much like his clothes being removed either.

We're doing our best to get out and about and we've had a couple of shopping trips (more nappies, oh, and cotton wool balls) but we met up with the NCT group on Sunday in a pub in Taunton and that worked really well.  Lots of useful information and stories were exchanged.  Quite scary is that Dylan is the second oldest there but probably the lightest at just over 7pounds (the largest is over 12).

In terms of Dylan's progress: he has gained weight since leaving the hospital and when he's awake (enough) is capable of getting a bottle of milk inside him.  This last bit is quite important is it means that there's less reliance on the feeding tube, so it may be able to come out which will be a relief as it's a pain in the bum as it gets tangled in everything.  And then the cat wants to play with it.  So we are now on a "demand feeding" strategy except for overnight when he gets a bottle at about 3am.  This started on Monday and it's already made a difference as we can get more sleep as I'm not feeding Dylan at 11pm and 3am and the Mother isn't expressing anymore.  It can still take up to 2 hours to sort Dylan during the early hours.

Warning: babies may cause drowsiness

Dylan and the Mother also have lots of outings planned: today was baby massage, there's a breast-feeding cafe "thing" as well as meeting up with various mothers from the NCT group.  Thursday afternoon we have a check-up with SNICU to make sure that Dylan (and us!) are ok.

One final point is that Dylan now has a new cousin in Germany.  Which is fantastic news.

Dylan Henry Jones - Week 8

Wednesday - 18Apr12
Bad morning for technology again.  Second morning at home with Dylan and the second morning the alarm clock has failed to go off when it was supposed to (2am). Which is bad because putting food down him is important even if he's asleep.  On the plus side, he woke us up demanding food and certainly this morning managed a whole bottle before going back to sleep again so it's not all bad.  It's just rubbish waking to the sound of screaming, although probably something I'm going to have to get used too.

Asleep in his pram which doubles as a downstairs cot

I guess like most new parents the first few days are interesting.  Where interesting means carnage, sleep-deprived hell interspersed with moments of quiet and smiles.  Some of the smiles from the baby!  Unlike most parents, we have of course had some training so it hasn't been quite that bad.  We know about nappies, baths, body temperature and lots on feeding and breathing.  And actually, we are reasonably organised in terms of tasks that need to be done.  It can't be that bad as I managed to make biscuits yesterday!  But the decisions that you have to make like, "should I feed him now, or wait" and most importantly "why is he crying?!" are all new and unanswerable as yet.  His latest trick is to fight during a nappy change: elephant wrestling would be easier.  Certainly less messy, probably quieter too.

The carnage created by having a new baby in the house is very much present, made worse by the Mother having been away from home for several weeks and me being away at the weekend meaning there are bags requiring unpacking and sorting all over the house to which the stream of clothes, towels and sheets which Dylan seems to generate at an astounding rate just exacerbates.  In addition, we don't really have any storage space for any of Dylan's stuff: much of which is clothes and syringes at the moment!  We need to go out and get the remaining items on the "things a baby needs list" which includes a baby changing station as we're currently doing that on achanging mat on the bathroom floor.  On the plus side, we're borrowing a freezer from a friend in which to store the Mothers milk which will make planning meals more easy as our freezer is full to bursting.

Ready to leave SCBU (in SNICU)

But on the whole things are actually going according to some sort of plan.  Dylan continues to amaze and astound with his general progress and health and, as everyone keeps telling us, it's better he was born now as the cold and flu season won't really hit until he's much bigger and stronger thus hopefully putting off the inevitable lung infections off for a few months.  He has yet to pull the feeding tube out yet although this will need to be replaced on Sunday as a matter of course.  The tube is mostly used for drugs at the moment as there tends to be not much left from his bottle feeds at 11pm and 2am.  Whilst getting rid of the tube will be fantastic, it will make giving him his drugs more tricky.

The cat has taken the arrival pretty much in his stride.  If anything he's better behaved now.  OK so occasionally he decides he wants to help Dylan breast feeding by trying to sit on his head but mostly stays out of the way except when he wants food.

On his first full day away from SNICU, Dylan had a visit from the health visitor and then we went and registered him at the GPs (two weeks late).  He's just hit the 3kg mark, so for his compensated age (3weeks, actual age 7wks) he's well below average although not dangerously low.  His height\length is pretty much bang on average and his head size which in the ultrasound scans was well over the 95percentile is now a much more normal value.  Whether this has anything to do with his head being squashed by various respiratory masks is another question!  We have more visitors in the form of a community paediatric nurse .  We also have a follow-up meeting with the SNICU consultant next week to make sure that everything is going well.

 Which brings us pretty much to date.  I hope!  The number of posts from here on in will drop.  Dylan is home and we can resume a more normal existence away (mostly) from hospitals.  When things of note happen I will continue to post them here.  I am very much aware how much this blog has been read and been useful to people.

In his own bed at last

One thing to add at this point is a thankyou to all the medical staff from whom we have benefitted.  In roughly temporal order:
Maternity Unit at Musgrove Park Hospital Unit, Bristol
Fetal Medical Unit at St Michaels Hospital, Bristol
Harris Birthright Centre at Kings College Hospital London
Neonatal Intensive Care Unit (NICU) at St Michaels Hospital Bristol
Somerset Neonatal Intensive Care Unit (SNICU) at Musgrove Park Hospital, Taunton

Also a large thankyou to the Ronald McDonald House at Bristol for housing us for 4 weeks.

We will be wanting to give something back in the form of fundraising for some\all of the following charities:
CDHUK - the Congenital Diaphragmatic Hernia charity
CotsForTots - raising money for NICU
Ronald McDonald - accommodation for parents for children in hospital
SNICU
from whom we have had significant support.  The BTB - altho' really she should be BTW (Bride That Was) now she's married - is threatening a parachute jump in support of CotsForTots, already she is knitting woollen monkeys (very cute) in support. Another friend is\has been donating a percentage of profit from her sales of very lovely hats and toys (www.folksy.com/shops/smallthings) to CDHUK.   I am planning a recreation of the journey of the then unborn Dylan from New Mills to Bristol by bicycle (including the loops around Stockport that the ambulance took), details to follow - let me know if you'd like to get involved!

Finally, a thankyou to everyone who has sent us "stuff" (books, clothes, toys, a pram, fruit bushes,  and freezer space).  We will get round to sending out more formal thanks when things have calmed down slightly!

Dylan Henry Jones - Week 7

Friday - 13Apr12
Not really much to post.  Sorry!  Distracted by cake generation for BTB's wedding which is on Saturday (and clearly my bridesmaidly duties or something).  Dylan continues to do well though.  He's more awake between feeds which is new - sometimes a bit grumbly - but mostly awake and fidgety.  Occasionally he's even been now to conform to Standard Adult Awake Hours, but not often.

The last of the formalities for his release were completed today: he's now registered with the GP but more importantly the discharge meeting was held in the afternoon.  This mostly discusses how Dylan's health will be monitored over the next period.  Some changes to his feeding strategy but only in that he will no longer get fortifier in his milk as it's not really adding much to his feed (it equates to about an extra 10-15ml of milk per day) on his current dose - it's an extra 8 calories per 50ml.  It's also thought that his tube will come out in a week or two.  Potentially we could bring him home on Sunday but we shall see where we get too.  Perhaps selfishly we are using the SNICU as a baby-sitting\bottle testing facility for the day of BTBs wedding, but we weren't allowed to take him with us...


Wednesday - 11Apr12
The last two nights we've both been in the hospital looking after Dylan like "proper" parents.  Or something.

Alone, at last. HELP!!!

Do all new parents when they finally get their baby home (or in our case a room), put them down, look at them, at each other and then say "now what?" (after the obligatory profanity of course!).  We certainly did.

The first night was pretty hard: not really knowing what we were doing (do any new parents?) so we were pretty much awake most of the night.  As was Dylan helpfully!  The second night was better: a little better organised: although the 2am feed is reasonably horrid.  But Dylan did manage to take both his late feeds mostly with the bottle rather than tube and also slept which was nice.  We're trying to get a bottle that he gets on with so that I can help with the feeding and also to reduce the need for the tube.  I guess any baby has a preference, but because Dylan - at least according to expectation of CDH babies - tires easily and so nominally needs a slower teat than standard so that he is able to take all his food.  Whether that is actually the case we're still working out, but he doesn't actively dislike either of his options so we'll see what happens.  We do always have the back-up of the tube.

Today, the feeding strategy was changed: he was getting breast fed and then topped up using the tube (fortified breast milk).  However the amount going down the tube was so minimal that it's been decided not to bother with it.  So he's getting slolely breast fed except for the two over night feeds which is the fortified milk (55ml) either bottle or tube fed depending on how awake he is.  He is also now getting extra vitamins through the tube.

Finally! a chance to try on the hand knitted socks and hat

We've learnt lots of things:
1) the most depressing thing about alarms is when it tells you how long it is before it goes off and that's in less than two hours time... yes, we love 3 hour feeds!
2) how to put in a new ng tube
3) resuscitation on an unbreathing baby - there's both  a video to watch and a practical.
4) Dylan also has his mother's sleeping habits: when he's asleep nothing short of a small nuclear detonation will wake them


But it will be easier when we are home, although the knowledge of a bank of NICU nurses round the corner will be missed hugely.  I wonder how much cake would be required to get one on call ...

Sunday - 08Apr12
Big news: we've been given a release date!
All things being equal, then Dylan will be comingg home next Monday (16th).  Better make sure we've got everything we need at home then.  He can sleep in the sock drawer, it'll be fine!

We had a long chat with the consultant this morning mostly to determine what was happening and what we were waiting for to some extent in that we were happy feeding him through a tube, breast and bottle feeding, knew the routines etc. and couldn't quite see why we couldn't do all of that in the comfort of our home.  Certainly the Mother is going a little stir crazy having gone back into hospital after being home for a few days following a month away.

"I'm going where?!"

So the plan is that this week we are to be given lots of training: we need to know how to put his tube back in once he's taken it out, baby CPR, what to watch out for ( in terms of initial signs of illness or infection that we need to worry about),  as well as the whole managing weight gain and feeding thing.  The issue with the feeding is that he can't feed on demand: he's not strong enough for that and I'm not allowed to feed him maxi-muscle.  So there is a set amount of food per day that he should get, the problem with breast feeding is that you don't actually know how much he's had at a feed before he tires and thus how much extra to give him through the tube to make sure he's getting enough.  You can only really tell through his weight - which is currently on the increase - and his nappy - which varies from nothing to explosive.  One often following the other!

We will also be getting lots of outside support from dieticians, pediatricians as well as the health visitor.  Bless the health visitor who phoned us on week 2 to tell us that she wanted to visit: no one had mentioned that we were in Bristol and not at home.  Oops!

Before any of that happens, we have to do a trial run.  Dylan - once released - won't be allowed back in again.  So we are going to be spending two nights at the hospital with Dylan sleeping in a room so that we get some "practise".

Other than that, today has been quite a good day in terms of making progress.  We have a feeding strategy that mostly worked today and with luck will mostly work tomorrow as well.  And he is doing really well.  He is feeding well, just not well enough to be realeased without the tube which would be the ideal, but much better than we might have hoped given that many CDH babies never breast  feed.

So yes, everything continues to be good.  The chickens, goats and prayers that have been sacrificed/said are clearly doing the job!  So thankyou all very much once again.  And thankyou all for the books and clothes - he's been wearing non-hospital clothes for almost a week now - all very lovely and much appreciated.

Whilst utterly scary, I can't wait until he's home.  Should we tell the cat?

Dylan helping the nurses with the paperwork. Unless he's the paperweight...

Dylan Henry Jones - Week 6

Friday - 06Apr12

"if you won't feed me I'll eat this instead"

 The observant amongst you will notice that Dylan doesn't have a feed tube.  This is solely because he keeps removing them.  Two got taken out today.

On the plus side that means that he got his first bottle (of mother's milk) which he didn't do too badly with.  We also managed to get his drugs into him using a syringe into the mouth which again is a bonus although he was decidedly unimpressed with the taste of them.

We're just trying to get him fed, but because he gets quite tired getting enough food down him before he tires is the tricky bit.  The problem is that if he doesn't get enough food in him then he wakes up demanding food earlier than he's meant to.  Again, the problem with the babies and plans is that someone needs to tell the baby the plan so that they also know.  So today he's been awake and demanding food more often than not and crying.  Quite a bit.

On the plus side, we did manage to get out for a walk again in the sunshine and he had another bath.  Decidedly sick of hospitals.  Not coping very well with running in out of hospitals.  Right now I'm struggling to cope with the demands of the cat, quite apart from that of a small child.

On the positive side, while we are back in hospital (well,  the Mother is anyway) it is only until Dylan can feed properly and continues to gain weight.  Hopefully soon.

 

 And he is feeding.  We just need to know quite how best to manage his nutritional needs without the Mother going insane through lack of sleep and house deprivation.



Wednesday - 04Apr12
Today has been scary: the last monitor came off.  This is the apnoea monitor which monitors whether Dylan has stopped breathing or not.  He - and us - are on our own.  Well, other than the nurses of course!  In addition we're now trying to get the feeding tube out of him.  Obviously we could just pull it out but as he does such a good job of that we thought we'd leave that to him.  No, this is persuading him that actually he'd like to be breast fed instead.  So from this afternoon the Mother has been on call ready to provide food.  The problem is that he gets bored very quickly and falls asleep after 5 minutes which would be fine if that meant that he'd got enough food.  Which he doesn't.  The problem is that because breast-feeding is hard work for him we need to work out how much extra food he needs.  And he's not telling. Well. Except when he vomits, but neither of us are planning to measure that...  Now, the Mother is in the hospital.  Waiting.

Oh, and we've bought a car seat.

  
Tuesday - 03Apr12

"not sure about this being clean malarky"

It's very scary too realise that it's almost a week since he came off ventilators.

Today was bath day.  Not sure he was totally convinced, but perhaps even he realised that 5 weeks without a wash was perhaps unusual.  He tolerated it without any screaming.  Although that might have been fear that if he did we might try the "full immersion cleansing" technique. 

He has got into the habit of saving himself for nappy changing and then enjoying making a mess when the nappy is off.  And dressing him after bathtime was no different.  Oh well.  He was clean.  Briefly.

And that was the day's excitement.  Essentially we are getting used to Dylan: what his breathing is normally like in particular as well as the simple things like bathtime, nappy changing etc.  Yes, we're terrified of the time when there isn't a nurse there to tell us what we're doing wrong!

In the meantime, Dylan just has to gain weight consistently (it works out at about 1% weight gain per day).  The other "success" criteria  are maintaining temperature and feeding.  Temperature is fine and we are happy with feeding him through a tube on the proviso that we get training in putting the tube back in once he's pulled it out.  Which he will.  Regularly!

So, that means that once we're happy with Dylan (ie know what we're doing) and his rate of weight gain is good, he gets to come home.  We're hoping that they're not too stringent on the whole knowing what we're doing bit...

Dylan is starting to be more lively, he's looking at things and starting to track.  One of the interesting things we found out is that in terms of development he's about 1-2weeks old.  Not because of the amount of time spent in hospital, but because he was 4 weeks early. 


Monday - 02Apr12
Big day today.   No more tubes or wires for this baby!  The cannula came out very quickly after the last doses of antibiotics.  Then at about mid-afternoon the last serious monitor came off: this measures heart rate, breath rate and saturations.  The only thing he remains connected to is the apnoea monitor: this simply checks whether the baby's stopped breathing for more than 20seconds and all babies in SNICU are connected to one of these.

"I'm free!"

Even more exciting, was that we were allowed out!  Dylan got put in a pram - borrowed from SNICU as we still have nothing -  and wheeled around the hospital, dropping in to the Mother's place of work where the shrieks of excitement didn't wake him up!  They were all very pleased to see both Dylan and the Mother - obviously I have to be nice to them as they're all reading this too!  Seriously: it was lovely to be able to take him out and show him off to a very receptive audience.   It was a very surreal experience taking him out for a walk though.  After 5 weeks being able to go outside with him: take him to other people rather than people coming to see him.  It's hard to describe: I expect that every new parents go through this, just much earlier!  It's still strange the freedom to pick him up and cuddle him - and check whether his nappy needs changing of course - rather than asking or being told.

"Is this really ours?!"

Sunday - 01Apr12
Apologies for the silence since Thursday.  It was BTBs hen night on Saturday and as bridesmaid in chief it was important that I both organise and attend the event.

I should say that if there hasn't been a post, it means that there isn't anything to say: progress as normal

Hop-hop watches over Dylan's progress

So what has happened since his move from Bristol?  Well Friday and Saturday were essentially leaving Dylan mostly alone as the move did unsettle him.  Well, apparently!  He hasn't been quite so good at keeping his food down as he has been and just seems slightly less happy.  But, he's still without ventilation - so all good there then!

He's trying to feed from the Mother with some suck-sess but is still learning how to eat and breathe at the same time, but then blokes have never been able to multi-task.  Breast feeding is quite hard work for normal baby's and after very little time Dylan's working really hard to breathe.  When he's tired trying to feed him this way is a non-starter: he's just not interested. 

To break the Taunton staff in gently, he waited until Saturday before requiring them to put in a new cannula.  They had just as much fun as Bristol did!  But we are now on Sunday evening and that means that it's probable that the antibiotics will stop tomorrow.   We think that it may come out on Tuesday as he's missed a couple of doses due to cannula failures and so there may be a few more to go.  But once the cannula is out, that can only mean one thing: bath time!  The first time in 5 weeks.