Dylan Henry Jones - Month 6

Wednesday - 22Aug12
Hurrah! Dylan now has a passport.  His first climbing trip is on the horizon! Next month in fact.  Hurrah and hurrumble! I hope the French are prepared.  I am outraged at the fact that not only does he need a passport at the age of six months for which we need to pay it also lasts 5 years (which given the amount children do change in that time seems a bit daft).  And the usual strict photo rules apply.  On the plus side at least his photo will probably still be recognisably him in five years even though it is a bit Uncle Fester-y (no neck and no hair)...

 
Tuesday - 21Aug12
Well, the good news is that Dylan is clearly taking to the addition of fortified milk to his diet like the proverbial duck as he's gained almost a pound of weight in a fortnight.  He's now at 12lb 2 (or about 5.6kg).  This is quite re-assuring as his lack of weight gain over the previous month was causing us some concern.  The other bit of good news is that we've started introducing "real" food into his diet.  He's not really interested in picking food off a plate yet, but seems really quite keen on being spoon-fed pureed sweet potato.  Although occasionally he does think his supporting seat is better for chewing... Not sure what's on tonight's menu.  But he continues to do really well, he has Father's butterfly mind and so easily bored and gets grumpy when not entertained\interested.  He does like company (takes after his mother there then) and is mostly a cheery-smiley boy.  Which helps at three in the morning as he's clearly really pleased to see you and all you want to do is go back to bed.

On the downside: he's decided that sleep is overated and where once we could just about get a four hour break between putting him to bed and first night-time feed, that's now down to two hours.  He's also decided that nightime is really quite interesting and so won't go back to sleep after you've fed him either.  So about every two hours throughout the day he wants feeding, and overnight it may be an hour before he goes back to sleep again. We're on the fifth day of this and it's getting quite hardwork to remain cheerful and tolerant (well, as tolerant as I get).  Investers; now is the time to buy into coffee beans!  It probably doesn't help that he has a slight cold so breathing and eating are a bit more difficult than normal.  Hopefully once the cold has gone he'll go back to sleeping more.  Please.

The cat has also found the changing station and has decided that we're clearly very lovely owners to put in a nice high cat basket for him to sleep on.  Comfy too.  And if that's occupied, there's all these nice little baskets underneath just right for a curled up cat...

spot the cat...

Oh, completely forgot:  he's officially to big for the Moses basket and now has a (small) cot instead.  Big mistake was changing his nighttime routine AND his bed the same day.  No sleep that night!



Tuesday - 14Aug12
Olympic Trivia Fact #2: apparently the person who came sixteenth in the marathon on Sunday was also a CDH baby...

We went to see the hockey and the volleyball over the weekend.  Not sure whether Dylan enjoyed it but he was certainly surprisingly well behaved throughout.  Getting through security was made very easy as he's feeding from the Mother so no need to split food into 100ml pots!  We were very glad that we had bought ear defenders for Dylan as the volleyball (indoors and a bronze medal match) was loud with lots of enthusiastic Italians.  Dylan slept through it.

noise? what noise ...

Tuesday - 07Aug12
The interesting thing about having surgery is that things get moved around a bit.  Clearly the placement of our internal organs is like one of those puzzles where everything has to go back in just so otherwise you've got bits leftover.  Like the appendix.   Or maybe the heart isn't quite where you expect it to be...

It's blurred 'cos he won't stop wriggling...

We had the cardiac appointment  yesterday.  This was mostly to check whether there was in fact a coarctation of which there had been a worry in the pre-natal scans.  The problem with these early scans is that there was pressure on the heart from the abdominal contents which meant a proper view  couldn't be had.  He had another scan fairly early on - I think before his surgery - but there was too much fluid (in his body) and so again a real picture couldn't be obtained.  The consultant was running late so the initial review was pretty cursory prior to the actual scan.  Dylan's looking healthy, nice and pink with a good oxygen saturation and good steady heart rate.  We then had the echocardiogram scan and this showed some worry: an initial view that there was quite a severe narrowing of the (0.3mm as opposed to around 4mm).  It didn't help that Dylan is quite lively and doesn't really like being prodded and scanned.  Even when feeding.  Apparently babies are meant to be nice and relaxed when feeding (from mum).  Not this one.  He's a wriggler.  After about an hour and an initial talks of maybe if not surgery then certainly placement of a balloon to expand the narrowing, a clear view was found of the problem area.  And it's not really a problem.  It is slightly narrower than it should be but really nothing to worry about although we do have a follow-up appointment in four months.

The scans were in Bristol so whilst there we took the opportunity to go to St Michaels and Ronald McDonald to show-off Dylan and to say thank-you to all who have helped us.  These are in Fetal Medicine Unit, Maternity Unit, Neonatal Intensive Care and the Ronald McDonald House.  We didn't see everyone unfortunately: Prof. Soothill who was the consultant at FMU was out which was a shame.  We did see the midwife who delivered Dylan and she was really pleased to see him as was one of the nurses (the only who was available)  who looked after Dylan at NICU.  They don't often get to see what happens months down the line and how baby progresses - or in the case of the staff at Ronald McDonald they never see the children as they're always in hospital.

"... will you put that camera down!"

Saturday - 04Aug12
After admiring the facial hair of the male shotputters in yesterdays final, Olympc trivia fact #1 is that the shotput used weighs 7.5kg.  This is about 1.5 Dylan's.... Not sure he'd appreciate being manhandled by a large beardy man (as opposed to the scrawny occasionally beardy man who's his dad).   However he didn't actively object to being put into a trailer and dragged up and down hills in the rain by his dad.  Many thanks to the Hamblins for packing their trailor and dragging it down to Wales for us (well, me) to play with.  In fact so well did the experiment go, that there has been comment from the Mother that she may reverse her avowal to never cycle with a male member of the Jones family.  This is solely on the basis that I am loaded down with trailor and panniers.

For his month 5 birthday, we took him camping in Wales.  He didn't actively object to the experience! Although on the Sunday he did go through an eat-scream-sleep cycle that lasted into Monday which as many will atest too is tiring.

Following Dylan's lack of weight gain a fortnight ago, he's back on fortifier: this is added to his nightly bottle.  He's getting an extra 100calories a day from this.  Other than that things are progressing.  It's difficult to see how he changes on a daily basis.  We know he's getting bigger as he's growing out of clothes (and the Moses basket - finally!).  The Mothers parents visit about once a month and they assure us that there's something new each visit.  He's close to giggling, but not quite there yet and he's very good at grasping things but his arm co-ordination can be a bit lacking at times.  From a medical perspective we have a cardiac appointment in Bristol on Monday.  This is to check whether there is co-arctation in his heart or not.  The ultrasound scans were inconclusive and this is the first real opportunity to check.

The planning for the sponsored ride is getting there.  A new page (Dylan's Dad's Ride) on this blog is available here and this holds all the details and the sponsorship pages are available (one for CDH UK, the other for Ronald McDonald House (Bristol) ) are here:

www.mycharitypage.com/dylanjones (for CDH UK)

www.justgiving.com/dylanhenryjones (for Ronald McDonald House (Bristol))

Need to get some training in...