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!