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...