Wednesday Update
Apologies for lack of updates and photos. Unsurprisingly, the NHS budget doesn't include WiFi and I'm not typing out 8 A4 pages of notes on my phone.
Dylan is doing really rather well. So far. If things continue as they are, he should be going in for surgery on Friday or Saturday. This means we have two days of relaxing slightly whilst he is stable ( stable is our new favourite word) before the terror of what effect the surgery has on him ( other than the positive effect of allowing him to breathe!) takes over. Perhaps we are being pessimistic, but we are very aware how quickly things can change when you're idge and the prognosis that we have been given over the last few months has been poor. We shall see. On the plus side, I've now changed two nappies! No hugs for Dylan yet though as he's still connected to a ventilator and is so doped up to the eyeballs with muscle relaxants and sedatives not sure he'd notice. Story time has resumed however. Photos and full story will appear tomorrow (Thursday). Promise!
Apologies for lack of updates and photos. Unsurprisingly, the NHS budget doesn't include WiFi and I'm not typing out 8 A4 pages of notes on my phone.
Dylan is doing really rather well. So far. If things continue as they are, he should be going in for surgery on Friday or Saturday. This means we have two days of relaxing slightly whilst he is stable ( stable is our new favourite word) before the terror of what effect the surgery has on him ( other than the positive effect of allowing him to breathe!) takes over. Perhaps we are being pessimistic, but we are very aware how quickly things can change when you're idge and the prognosis that we have been given over the last few months has been poor. We shall see. On the plus side, I've now changed two nappies! No hugs for Dylan yet though as he's still connected to a ventilator and is so doped up to the eyeballs with muscle relaxants and sedatives not sure he'd notice. Story time has resumed however. Photos and full story will appear tomorrow (Thursday). Promise!
Dylan Henry Jones
Born Sunday 26th February 2012 at 11:50am weighing 5 pounds 3 ounces. Currently in NICU.
The problem with babies and plans is that babies can't read so don't follow them ...
Wrong city for the Mothers waters to break. Manchester. On a Friday night Oops.
Fourteen hours later driving to Bristol at top speed towards another hospital. Now in the early hours of Sunday morning and the Mother is getting prepared to be induced 2 wks early. Here continues the adventure.
More - much more - to follow. Including the frustration involved in sitting in the back of an ambulance, stationary, in a layby and how to keep calm in the face of an obstreporous midwife.
On the plus side, whilst I did miss the game, I can enjoy the fact that Wales won and am sure beanie did a victory dance at the end
Born Sunday 26th February 2012 at 11:50am weighing 5 pounds 3 ounces. Currently in NICU.
The problem with babies and plans is that babies can't read so don't follow them ...
Wrong city for the Mothers waters to break. Manchester. On a Friday night Oops.
Fourteen hours later driving to Bristol at top speed towards another hospital. Now in the early hours of Sunday morning and the Mother is getting prepared to be induced 2 wks early. Here continues the adventure.
More - much more - to follow. Including the frustration involved in sitting in the back of an ambulance, stationary, in a layby and how to keep calm in the face of an obstreporous midwife.
On the plus side, whilst I did miss the game, I can enjoy the fact that Wales won and am sure beanie did a victory dance at the end
Gwynfor, thank you!!! Oh the past few months of just holding you all in my thoughts and my hearts, not wanting to intrude on your coping with this new world... I have read a lot about CDH, but if there is one thing that can be said, it is when you have met one child with special needs (read CDH), you have met ONE child with special needs. I am so grateful to be able to follow your story in retrospect up till Dylan's second day and love getting to know you, Gwyn through the voice of your journey. Know that I am here, anytime for any of you in any small way I can be of help xx Benedicte
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