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.