With enormous thanks to the generosity of Elis' family and friends, we have collected a huge £1,315 to do something in memory of Elis at the hospital. I have spoken to other mums from the unit as well as the staff about how best to spend the money and we have agreed a general plan.
I would like to re-purpose what is currently just a toy room by the neo-natal unit into a multi-purpose room for use by family and friends on the unit. At the moment, if you have to leave your baby's cot (during rounds or during a procedure etc) you sit in the corridor and wait, which can sometimes be for some considerable time. I would have really appreciated having a cosy little 'santuary' to retreat to during such times, or just to have a break when things were getting tough, eat a sarni, go for a chat etc etc etc. Creating that sanctuary is the plan, we just need to wait until they're not quite so busy on the unit and deal with all the health and safety issues before we get cracking.
Meanwhile, as a more personal tribute, I have combined all the posts and comments from this blog with the photos published online into a book. I have also incorporated photos and messages from the nursing staff that they had written in a book whilst Elis was in hospital. I wanted to have something to show him when he was older that showed him how much he was loved during his difficult early life so that he had a positive view of it.
I originally published this book purely for my own benefit as I wanted to have a physical copy of his story, but I have been asked by a number of people if they can have a copy of the book. The simplest thing is just to provide a link to the book and enable people to order it directly. It is about 140 pages long and costs £11.05, which is purely the cost of printing - we're not generating any money from sales, so only buy a copy if you really want one. You can download it for free.
Once we have made the changes to the toy room at the hospital, I will post some photos to show what has been achieved and also then update the book to reflect his memorial at the hospital.
Wednesday, 27 February 2008
Saturday, 1 December 2007
Thank you
Thank you for helping us say farewell to Elis. Under the circumstances, we had a good day yesterday and finally having him home and in his bedroom felt so right. We were able to laugh and cry together whilst sharing our memories and love for him.
We know that he has all he needs now - he has his angel bear for love, his bunny blanket for protection, his Humphrey bear for friendship and his dummy for comfort. We shall all miss him dearly but he will be forever in our hearts.
Thank you also for your donations towards something for the Neonatal Unit in memory of Elis. I will update this post to keep a track of the total.
Total Donations £1315
30/11/07 Cheque £35
01/12/07 Cheque £25
01/12/07 Cheque £30
01/12/07 Cheque £30
04/12/07 Cheque £30
05/12/07 Cheque £20
05/12/07 Transfer £30
06/12/07 Cash £20
06/12/07 Cheque £20
07/12/07 Cheque £20
07/12/07 Cheque £20
08/12/07 Cash £15
08/12/07 Cash £10
08/12/07 Cheque £10
08/12/07 Cheque £20
08/12/07 Cash £10
08/12/07 Cash £5
08/12/07 Cash £5
08/12/07 Cash £10
08/12/07 Cash £5
08/12/07 Cash £10
08/12/07 Cheque £15
10/12/07 Cheque £100
10/12/07 Cheque £30
12/12/07 Transfer £100
12/12/07 Cheque £10
15/12/07 Cheque £50
15/12/07 Cheque £40
17/12/07 Cash £100
17/12/07 Cheque £20
17/12/07 Cheque £30
19/12/07 Cash £5
19/12/07 Cash £20
20/12/07 Cash £10
20/12/07 Cheque £20
20/12/07 Cheque £40
21/12/07 Cheque £100
26/12/07 Cheque £40
31/12/07 Cash £30
04/01/08 Cheque £15
10/01/01 Cash £20
12/01/08 Cheque £20
16/01/08 Cash £5
16/010/8 Cash £5
16/01/08 Cash £10
04/02/08 Cheque £100
We know that he has all he needs now - he has his angel bear for love, his bunny blanket for protection, his Humphrey bear for friendship and his dummy for comfort. We shall all miss him dearly but he will be forever in our hearts.
Thank you also for your donations towards something for the Neonatal Unit in memory of Elis. I will update this post to keep a track of the total.
Total Donations £1315
30/11/07 Cheque £35
01/12/07 Cheque £25
01/12/07 Cheque £30
01/12/07 Cheque £30
04/12/07 Cheque £30
05/12/07 Cheque £20
05/12/07 Transfer £30
06/12/07 Cash £20
06/12/07 Cheque £20
07/12/07 Cheque £20
07/12/07 Cheque £20
08/12/07 Cash £15
08/12/07 Cash £10
08/12/07 Cheque £10
08/12/07 Cheque £20
08/12/07 Cash £10
08/12/07 Cash £5
08/12/07 Cash £5
08/12/07 Cash £10
08/12/07 Cash £5
08/12/07 Cash £10
08/12/07 Cheque £15
10/12/07 Cheque £100
10/12/07 Cheque £30
12/12/07 Transfer £100
12/12/07 Cheque £10
15/12/07 Cheque £50
15/12/07 Cheque £40
17/12/07 Cash £100
17/12/07 Cheque £20
17/12/07 Cheque £30
19/12/07 Cash £5
19/12/07 Cash £20
20/12/07 Cash £10
20/12/07 Cheque £20
20/12/07 Cheque £40
21/12/07 Cheque £100
26/12/07 Cheque £40
31/12/07 Cash £30
04/01/08 Cheque £15
10/01/01 Cash £20
12/01/08 Cheque £20
16/01/08 Cash £5
16/010/8 Cash £5
16/01/08 Cash £10
04/02/08 Cheque £100
Wednesday, 28 November 2007
Farewell to Elis
Our thanks go to everyone for their kind thoughts, comments and cards. Although his life was woefully short, Elis was such a special little boy he found his way into so many hearts and we are all grieving together.
Glyn and I don't feel that a traditional funeral is an appropriate way for us to say our goodbyes to Elis. Instead, he is finally coming home on Friday when our family and some of the nurses who cared for him can have a chance to share our memories and be with him one final time.
As such, we would rather not receive any funeral flowers but if you would like to make a donation, we will be liaising with the Special Care Baby Unit at the hospital to buy something in Elis' memory which other parents and families will benefit from in the future. We will personally collate all the donations and let you know in due course what the money has been spent on.
On a more personal level, we continue to welcome your comments and kind wishes which we would like to incorporate into a memory book during the coming months.
Please keep Elis in your thoughts from time to time - his determination was an inspiration to us all.
With love and our sincere thanks for your interest and support.
Josie and Glyn xx
Glyn and I don't feel that a traditional funeral is an appropriate way for us to say our goodbyes to Elis. Instead, he is finally coming home on Friday when our family and some of the nurses who cared for him can have a chance to share our memories and be with him one final time.
As such, we would rather not receive any funeral flowers but if you would like to make a donation, we will be liaising with the Special Care Baby Unit at the hospital to buy something in Elis' memory which other parents and families will benefit from in the future. We will personally collate all the donations and let you know in due course what the money has been spent on.
On a more personal level, we continue to welcome your comments and kind wishes which we would like to incorporate into a memory book during the coming months.
Please keep Elis in your thoughts from time to time - his determination was an inspiration to us all.
With love and our sincere thanks for your interest and support.
Josie and Glyn xx
Saturday, 24 November 2007
24/11/08
Almost as quickly as he came into this world, Elis slipped away from us last night whilst in my arms.
Our eternal thanks go to the staff at the Royal Glamorgan Hospital, who against the odds, gave us time to get to know our precious son and above all, loved him too. Also to all our family and friends who have supported us through this ordeal. What an appalling year for us all.
Give your kids an extra big hug and kiss for Elis when you next see them. He couldn't have been more loved.
Our eternal thanks go to the staff at the Royal Glamorgan Hospital, who against the odds, gave us time to get to know our precious son and above all, loved him too. Also to all our family and friends who have supported us through this ordeal. What an appalling year for us all.
Give your kids an extra big hug and kiss for Elis when you next see them. He couldn't have been more loved.
Thursday, 22 November 2007
22/11/07
Yesterday it looked as though the new medication was working well for Elis and he was looking quite a lot better although still on a lot of oxygen. However, today he has taken a turn for the worse again and things are looking pretty bleak at the moment.
Tuesday, 20 November 2007
20/11/07
Things haven't gone so well for Elis over the last couple of days and yesterday the consultant spent a lot of time with him. He had a heart scan and ECG and it now seems that his problems can be attributed to pulmonary hypertension. The right ventricle which supplies the lung has been working so hard it has become enlarged and so is squashing the left. It also can't push out enough blood (because of fluid retention amongst other things) that blood is just being shunted back across to the left ventricle, therefore not being oxygenated. It's not an easy condition to treat, but there is some medication on its way from Gt. Ormonds Street Hospital that should arrive today around 12 noon. It will then take 24-48 hrs before it takes enough effect for them to review dosage. At the moment he is back in an incubator on 5 litres nasal, 65% ambient and the facial mask and his sats have been 30-70, but averaging 50-60 which obviously isn't great news either. He's been given lots of extra frusemide and now we all just need to keep our fingers crossed that he hangs on in there for the next few days until the treatment has a chance to help. If at all possible they will avoid going the ventilation route as that could be counterproductive and be extremely risky.
There is nothing any of us can do now. It's up to Elis to keep going and as he is not showing signs of distress this will hopefully relax the blood vessels in his lungs to reduce the pressure on his heart. The doctors will of course respond if necessary. Josie and Glyn are looking after each other and both know that everyone is routing for Elis. They would prefer to keep a low profile during this stressful time but we hope to have better news as the week progresses.
There is nothing any of us can do now. It's up to Elis to keep going and as he is not showing signs of distress this will hopefully relax the blood vessels in his lungs to reduce the pressure on his heart. The doctors will of course respond if necessary. Josie and Glyn are looking after each other and both know that everyone is routing for Elis. They would prefer to keep a low profile during this stressful time but we hope to have better news as the week progresses.
Wednesday, 14 November 2007
14/11/07
It's all been a bit pants over the last couple of days. Elis was put back in an incubator in Intensive Care yesterday morning as his oxygen requirement was increasing again. He's back in steroids to help his lungs, his diuretics have been increased and a chest Xray taken yesterday afternoon revealed that he has another chest infection so is now on two types of IV antibiotic as well.
He's got bigger prongs up his nose so that he can get more oxygen that way and was in 65% ambient oxygen in the incubator as well. By the time I left this evening though, the incubator oxygen had been weened back to to 21% so he could then be put back into his cot. It seems very strange to have a cot in Intensive Care but there are no spaces in High Care at the moment for him to be in there. Hopefully the antibiotics will nip the infection in the bud and the other meds will bring his oxygen back to a manageable level. Chances are that he will now need to stay on the steroids for the forseeable future to help Elis' lungs function better so all the targets that we were working towards a couple of days ago are now out of the window. At the moment we'll just focus on getting through this infection and get him on an even keel again.
He's got bigger prongs up his nose so that he can get more oxygen that way and was in 65% ambient oxygen in the incubator as well. By the time I left this evening though, the incubator oxygen had been weened back to to 21% so he could then be put back into his cot. It seems very strange to have a cot in Intensive Care but there are no spaces in High Care at the moment for him to be in there. Hopefully the antibiotics will nip the infection in the bud and the other meds will bring his oxygen back to a manageable level. Chances are that he will now need to stay on the steroids for the forseeable future to help Elis' lungs function better so all the targets that we were working towards a couple of days ago are now out of the window. At the moment we'll just focus on getting through this infection and get him on an even keel again.
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