Friday - 01Jun12
Dylan is now over 4kg!
In other news, we met the luckiest small mammal thing yesterday.** Clearly I must have been tired on Thursday as I slept through the early morning feeds and the cat bringing in a small mammal. Given that this was mid-feed, the Mother separated what appeared to be a now dead mammal and the (now uninterested) cat so that she could finish feeding and then clear up the mess. Except when it came to clear up, the mammal had disappeared. Oops. Clearly the cat is losing it's killing instinct.
The next evening, after a long afternoon afternoon of a fractious Dylan the Mother swapped the sofa and child with me only to discover that she'd been sitting on the very much alive mammal. Which seemed remarkably unbothered and equally unfussed about being extracted from the sofa and taken outside into the garden - past the cat - where rather than making a bid for freedom into the shrubbery ran\bounced across the lawn until I picked it up again and lost him under the berberus....
The cat hasn't found it again. Yet.
** it was small and mouse-like but it jumped as well as scurried. I need a mammal recognition chart clearly - obviously this also needs internal as well as external views...
Monday - 28May12
Looking back over the contents of the blog - particularly the photos - it is incredible how far Dylan has come in such a short time (and how poor some of the English is!). Ignoring the difference due to the lack of medical support we find it quite difficult to tell how much he's actually grown and changed until an external factor shows us: such as a change in size of baby clothes and not just due to the length but he's also starting to fill them out a little better. He's still scrawny, obviously!
We had an appointment with the physio this afternoon and she was very impressed with how much he'd changed since she last saw him which was within a few days of him arriving in Musgrove Park. His physical development (so ability to support his head and have control) is behind given even his compensated age (so taking into account he was a month early which makes him 2 months old rather than 3 - most of his measurements do this which is handy as it keeps them within almost "normal" bounds"). But she did say that given he was in hospital for the first month or so then that is what would be expected - ie you could take another month his compensted age to give an estimate of his physical dvelopment age. So he's doing very well all things considered. Although the fact that he prefers lying in the banana shape is something to ask questions about when we next see the consultants.
Monday, 28 May 2012
Thursday, 24 May 2012
Dylan Henry Jones - Week 13
Thursday - 24May12
Bloody hell! He's three months old and weighs very nearly 9 pounds! He's also learnt an important Jones trait: grouchiness. But today he went for his first run. Well I ran and he didn't scream although I almost did on the fourth hill climb. But mostly when he's decided he's unhappy you certainly get to know about it and the simple sleep-eat-nappy routine isn't quite so simple anymore. Now while the screaming is undoubtedly doing wonderful things for his lung growth - and certainly if you heard him at full bore you'd doubt whether he had a lung condition - it's using up valuable calories!
He's been taken off one of his three medicines - ranitidine - which is one of the anti-reflux drugs. This is mostly because he really disliked it. Trying to get medicine from a syringe into the mouth of a screaming baby should really have been one of Heracles' trials. It will be replaced with a similar antacid drug.
Other than that we walked into Taunton to watch the Olympic Torch and he was mostly very good throughout by sleeping rather than screaming!
Bloody hell! He's three months old and weighs very nearly 9 pounds! He's also learnt an important Jones trait: grouchiness. But today he went for his first run. Well I ran and he didn't scream although I almost did on the fourth hill climb. But mostly when he's decided he's unhappy you certainly get to know about it and the simple sleep-eat-nappy routine isn't quite so simple anymore. Now while the screaming is undoubtedly doing wonderful things for his lung growth - and certainly if you heard him at full bore you'd doubt whether he had a lung condition - it's using up valuable calories!He's been taken off one of his three medicines - ranitidine - which is one of the anti-reflux drugs. This is mostly because he really disliked it. Trying to get medicine from a syringe into the mouth of a screaming baby should really have been one of Heracles' trials. It will be replaced with a similar antacid drug.
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| Waiting for the flame... |
Thursday, 17 May 2012
Dylan Henry Jones - Week 12
Thursday - 17May12
Hurrah for Calpol! Today he had his first dose. He's been an unhappy'ish boy over the last couple of days even when feeding. One thought is that the doses of renitadene and domperidone - which are the anti-reflux drugs - haven't increased since he was under 6pounds and so aren't quite as effective as they once were. He's been a bit vomity the last couple of days although the worst is the cough that is the sign of the reflux. It sounds like he's been on sixty a day for the last aeon.
To add to the entertainment (and again why he may be less than gruntled with the world) is that his parents have succumbed to the lurgy so inevitably he's also going to increase his coughing ability and a nasty man stuck needles in him today which is never going to improve ones mood, but he is now vaccinated.
On the plus side we've breached the 8pound barrier! He's now (or was on Tuesday) 8pound 5.
Hurrah for Calpol! Today he had his first dose. He's been an unhappy'ish boy over the last couple of days even when feeding. One thought is that the doses of renitadene and domperidone - which are the anti-reflux drugs - haven't increased since he was under 6pounds and so aren't quite as effective as they once were. He's been a bit vomity the last couple of days although the worst is the cough that is the sign of the reflux. It sounds like he's been on sixty a day for the last aeon.
To add to the entertainment (and again why he may be less than gruntled with the world) is that his parents have succumbed to the lurgy so inevitably he's also going to increase his coughing ability and a nasty man stuck needles in him today which is never going to improve ones mood, but he is now vaccinated.
On the plus side we've breached the 8pound barrier! He's now (or was on Tuesday) 8pound 5.
Wednesday, 9 May 2012
Dylan Henry Jones - Week 11
Friday - 11May12
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| Chief mouser of the South West hard at work |
Yesterday (Thursday) we had our visit from the paediatric nurse. Yes, it's weight check time again and a loud hurrah and hurrumble for Dylan has put on weight for the second consecutive week. Exactly the same as last time; 0.2kg. This puts him up to the dizzying heights of 3.6kg (or 7lb 15oz for those of us who still use old money). Even better than that is that the tube has gone! Only temporarily. We're going to see whether he manages to continue gain weight without the need to tube feed when he doesn't manage his full 2am feed. The next weigh-in is Tuesday.
The lack of tube makes giving medicines slightly more tricky as the medicines are for the most part thick and sticky. We've also changed feeding teat: Medela - the breast pump people - make teats as well and that Dylan seems to get on with that much better than the hospital ones. The Medela ones mimic breast feeding which mostly means he can pause feed whilst still having the teat in his mouth. With the hospital ones this just results with milk over his face.
One of the Mothers from the CDH website page posted the following link to an Australian video
http://sixtyminutes.ninemsn.com.au/stories/8273200/little-miracles
This shows the FETO procedure as undertaken by Prof. Nikolaides which they had done 2 years ago when it really was experimental. Still incredible to watch.
(on Firefox the video doesn't show properly in standard, but if you double left-hand (mouse) button click it will go into full-screen mode, I don't know how it views in other browsers. Needless to say the iPad doesn't like it).
Wednesday - 09May12
Conspiracy theorists rejoice! There is proof that babies and cats can communicate in order to drive parents to distraction. It's the only reason that they both manage to create chaos simultaneously. The latest was Dylan pulling his tube out just as the Cat decided that what we really needed was a live (unparalysed) mouse in the living room. At 2am. At least Dylan was awake enough not to need the tube for his overnight feed and the mouse is ... somewhere in the house. Probably. But not in the Cat.
Last weeks weight gain has meant that we've been able to play with our new toy (a baby sling) as he's now big enough to be allowed in it. So we got out for a walk over the Quantocks on Sunday enjoying the surprisingly good weather.
Tuesday, 1 May 2012
Dylan Henry Jones - Week 10
Tuesday - 01May12
Hurrah! He's put some weight on - 0.2kg. Before the weekend there were concerns that he hadn't put any weight over last week. So at the meeting with the paediatric nurse and SNICU consultant last Thursday most of the discussion was about feeding. After talk of various ways to supplement his feeding, the simplest option was chosen: just up his 3am feed to 70ml (from 56ml) and to add fortifier to it. If that then doesn't create a weight gain over the next week then maybe we would have to think about bottle food (not breast milk) or top-ups at each feed.
Hurrah! He's put some weight on - 0.2kg. Before the weekend there were concerns that he hadn't put any weight over last week. So at the meeting with the paediatric nurse and SNICU consultant last Thursday most of the discussion was about feeding. After talk of various ways to supplement his feeding, the simplest option was chosen: just up his 3am feed to 70ml (from 56ml) and to add fortifier to it. If that then doesn't create a weight gain over the next week then maybe we would have to think about bottle food (not breast milk) or top-ups at each feed.
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