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
Saturday, 1 December 2007
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.
Monday, 12 November 2007
12/11/07
Elis seems to have been a bit more relaxed today and his sats were generally a bit better although he's still been on three litres of oxygen. His diuretics are being changed as of this evening so fingers crossed that this does the trick for his oxygen requirement.
It would seem that the cysts on Elis' lungs have been there for some time and are just more apparent as they are bigger at the moment but shouldn't cause any specific problems in addition to the general Chronic Lung Disease.
It would seem that the cysts on Elis' lungs have been there for some time and are just more apparent as they are bigger at the moment but shouldn't cause any specific problems in addition to the general Chronic Lung Disease.
Sunday, 11 November 2007
11/11/07
This week has been a bit stressful as Elis' oxygen requirement has continued to be problematic. To compound the issue, he had his 16 week immunisations on Wednesday and reacted a bit badly to them for a couple of days. During the week his oxygen requirements have crept up and by yesterday he hit a whopping 5.5 litres. He doesn't seem to by symptomatic of infection and he's not been too bad with taking his bottle feeds. He was given another extra dose of diuretic last night as the thinking is that perhaps the fluid is building up again and making it difficult for Elis to breathe and putting more strain on his heart. It seemed to help but he's still been on three litres of oxygen today and his sats haven't been particularly good. I'm looking forward to hearing what the consultant has to say tomorrow morning as I have gone back through my notes and I think that the period when his oxygen requirements were at their lowest coincides with when he was on a course of this additional diuretic.
The good news is that when his steroid level was checked during the week, whilst we were expecting it to still be low, it was actually high. The dose was halved on Friday and his final dose was given this morning. Once he has had a week without any hydrocortizone medication, he will be tested to see if his body can produce a burst of steroids if it is put under stress. After this test, the doctors will be in a better position to know whether he could cope with undergoing surgery at this stage. At least this is something that has gone in the right direction this week. It's a bit of an unexpected kick in the stomach that we now seem to have increased respiratory issues to resolve. Poor Elis, it really is one thing after another.
Oh, it also seems that his Xray last weekend shows that he now has cysts on his left lung. Again, I'm not entirely comfortable that I know the implications of this, but I've been told that its not an uncommon development with Chronic Lung Disease and it might improve or it might not. It will make Elis more vulnerable to chest infections and further infections could result in further cysts... Just another topic for me to discuss with the consultant tomorrow.
The good news is that when his steroid level was checked during the week, whilst we were expecting it to still be low, it was actually high. The dose was halved on Friday and his final dose was given this morning. Once he has had a week without any hydrocortizone medication, he will be tested to see if his body can produce a burst of steroids if it is put under stress. After this test, the doctors will be in a better position to know whether he could cope with undergoing surgery at this stage. At least this is something that has gone in the right direction this week. It's a bit of an unexpected kick in the stomach that we now seem to have increased respiratory issues to resolve. Poor Elis, it really is one thing after another.
Oh, it also seems that his Xray last weekend shows that he now has cysts on his left lung. Again, I'm not entirely comfortable that I know the implications of this, but I've been told that its not an uncommon development with Chronic Lung Disease and it might improve or it might not. It will make Elis more vulnerable to chest infections and further infections could result in further cysts... Just another topic for me to discuss with the consultant tomorrow.
Tuesday, 6 November 2007
6/11/07
We haven't had a particularly good weekend with Elis despite his Nain. Taid and Anti coming to visit! His oxygen requirements suddenly increased quite dramatically and he was labouring much more to breathe. However, he had clear blood tests and a chest Xray overnight on Sunday night which showed no evidence of infection so he was given an extra dose of diuretic in case it was caused by a build up of fluid in the lungs and that seems to have done the trick. He is now back on one litre of oxygen and seems pretty stable again. Unfortunately, this little blip has again pushed everything back whilst we wait to see if it happens again so the prospect of his homecoming seems to have evaporated once again. Gutted. We know that everything has to be in Elis' own time and there is no way we would (really) want him home before he is well and truly ready, but the longer it goes on the less emotional resilience I seem to have. I just need to get a grip again and deal with it - there are no other options.
Meanwhile, back to Elis! Despite his boosted diuretics, he has still gained a few grams in weight since Friday and is now just over 7lb 6oz.
Meanwhile, back to Elis! Despite his boosted diuretics, he has still gained a few grams in weight since Friday and is now just over 7lb 6oz.
Thursday, 1 November 2007
1/11/07
I can't believe it's now November and I've been at that hospital since April. What a year.
Anyway, we had a lot of fun with the babies on the unit yesterday and they all looked absolutely fab in their halloween outfits. Not to be outdone, the mums had a lovely lunch at a local pub too.
Now, what shall we do for bonfire night...?
Anyway, we had a lot of fun with the babies on the unit yesterday and they all looked absolutely fab in their halloween outfits. Not to be outdone, the mums had a lovely lunch at a local pub too.
Now, what shall we do for bonfire night...?
Saturday, 27 October 2007
27/10/07
Elis has been upgraded to the nursery today and is back in a swinging crib so has more room for his toys. It is lovely to have progressed but a bit sad to leave our High Care buddies behind - at least we are still allowed to visit them as we have a Halloween party planned for Wednesday (followed by lunch in a local pub for the mums)!
He has done better with his weight since his last weigh in and is now 3.257kg which is 7lb 2oz - some of his clothes are now getting too small!
He has done better with his weight since his last weigh in and is now 3.257kg which is 7lb 2oz - some of his clothes are now getting too small!
Thursday, 25 October 2007
25/10/07
Elis had been nice and stable this week. He's been taking it easy (only putting on 30g at Monday night's weigh in!) and as always, doing things in his own time. With the help of the physiotherapists, we tried him in his baby carrier and sling this week and he was a very happy boy in the carrier.
As for when he might be coming home, that is a little bit uncertain again now. Elis has a hernia (Little Ernie) which we always knew would need surgery but were under the impression that it would be some time after he came home. However, his consultant is now thinking that it might be better for him to have it done before he goes home. Because of his poor lungs, he will need a specialist surgeon and anaesthatist so will have to go to a different hospital in Cardiff for the operation and will also need increased steroids again (he only got down to his maintenance dose yesterday). If the operation is carried out before he is discharged, he can be transferred to The Heath's Neonatal Unit whereas if he comes home first, he'll have to go to the paediatric ward along with all the other winter bugs and germs that we are desperately trying to avoid him coming into contact with. Elis' consultant will discuss the situation with the specialists involved in actually doing the surgery and we'll be guided by their advice. We're absolutely dreading having to go through the whole ventilation scenario again but you do what you have to. We're trying not to think about him coming home too much now as once again it seems to have got so close only to disolve again.
As for when he might be coming home, that is a little bit uncertain again now. Elis has a hernia (Little Ernie) which we always knew would need surgery but were under the impression that it would be some time after he came home. However, his consultant is now thinking that it might be better for him to have it done before he goes home. Because of his poor lungs, he will need a specialist surgeon and anaesthatist so will have to go to a different hospital in Cardiff for the operation and will also need increased steroids again (he only got down to his maintenance dose yesterday). If the operation is carried out before he is discharged, he can be transferred to The Heath's Neonatal Unit whereas if he comes home first, he'll have to go to the paediatric ward along with all the other winter bugs and germs that we are desperately trying to avoid him coming into contact with. Elis' consultant will discuss the situation with the specialists involved in actually doing the surgery and we'll be guided by their advice. We're absolutely dreading having to go through the whole ventilation scenario again but you do what you have to. We're trying not to think about him coming home too much now as once again it seems to have got so close only to disolve again.
Sunday, 21 October 2007
21/10/07
We've had a lovely stable weekend and as Elis is spending most of the afternoon awake now, he's very entertaining!! Today I've been trying to teach him to hold onto his own dummy as I'm getting bored of sticking it back in his mouth each time he spits it out! He's doing pretty well though!
Thursday's weight was 6lb 12oz.
Thursday's weight was 6lb 12oz.
Friday, 19 October 2007
19/10/07
Elis had a lovely four-month birthday yesterday sitting in his chair and reading his books. His feeds are still going well and this morning he was weighed at 3.097kg (I'll check what that is in real money when I get to hospital later). As the sun is shining this morning, hopefully we'll go for another stroll outside this afternoon.
Wednesday, 17 October 2007
17/10/07
We're still heading in the right direction and Elis is making steady progress. He's put on another 77g since Thursday and is doing well with his bottle feeds, taking 4-5 full feeds a day orally. His oxygen requirements have increased a little bit to about one litre and his steroids are being reduced this evening so we'll have to wait to see what happens as the week progresses.
Elis' consultant has said that if they can reduce his steroids to the maintenance dose next week without significant changes to his condition then it is possible that he could be coming home in about three weeks. At least his bedroom is now ready but for a few finishing touches!
He's had a busy day today as we've been making the most of the sunshine by going for a little walk around the hospital and then Elis had another bath so he should sleep well tonight.
Elis' consultant has said that if they can reduce his steroids to the maintenance dose next week without significant changes to his condition then it is possible that he could be coming home in about three weeks. At least his bedroom is now ready but for a few finishing touches!
He's had a busy day today as we've been making the most of the sunshine by going for a little walk around the hospital and then Elis had another bath so he should sleep well tonight.
Friday, 12 October 2007
12/10/07
Elis has been a good boy this week. He's doing well with his bottle feeding and is still putting on weight at a good rate. He is now 2.9kg which is 6lb 6oz. His steroid dose has been reduced once more and his oxygen requirements have remained stable at 0.5 to 1 litre. Yesterday he was given his 12 week immunisations - 4 weeks late, but hey, who's counting?! He's been happy enough though, feeding well and having reasonable periods of alertness and interest in his surroundings. We're going to have to find him new toys for when he comes home!
The great news is that there are mutterings amongst the doctors about him coming home in the not too distant future, assuming he increases the number of feeds he can take orally and maintains his weight and respiratory progress.
The gutting news about Elis coming home is that we need to find a new home for Dookie dog in a hurry. We have to do everything possible to minimise the risk of infection and sadly having a dog isn't conducive to having a germ-free home. If anyone knows someone who could give Dookie a happy home, please let me know asap. What can I say? He is loyal, intelligent, well behaved (most of the time) and truly lovely but can be boisterous so wouldn't be suitable for a household with young children. Truly gutted.
The great news is that there are mutterings amongst the doctors about him coming home in the not too distant future, assuming he increases the number of feeds he can take orally and maintains his weight and respiratory progress.
The gutting news about Elis coming home is that we need to find a new home for Dookie dog in a hurry. We have to do everything possible to minimise the risk of infection and sadly having a dog isn't conducive to having a germ-free home. If anyone knows someone who could give Dookie a happy home, please let me know asap. What can I say? He is loyal, intelligent, well behaved (most of the time) and truly lovely but can be boisterous so wouldn't be suitable for a household with young children. Truly gutted.
Sunday, 7 October 2007
7/10/07
Elis has had a good week and has remained infection free (as far as we can tell at the moment). He had us worried at the beginning of the week when his oxygen requirements went up, but that could be in response to his steroids being gradually reduced, thus having to work harder.
He's doing really well with learning how to bottle feed now and yesterday started on alternate bottle and tube feeds. They've even started talking about starting the discharge process again so if he can avoid infection and get rid of the tube feeds then he might be able to come home some time in November.
He's still putting on weight, checking in at 2.64kg (about 5lb 13oz) on Thursday night and has grown too big to be living in the cot so was upgraded yesterday into a swinging crib. It's beginning to look like his own private bedroom in the corner of High Care!
He's doing really well with learning how to bottle feed now and yesterday started on alternate bottle and tube feeds. They've even started talking about starting the discharge process again so if he can avoid infection and get rid of the tube feeds then he might be able to come home some time in November.
He's still putting on weight, checking in at 2.64kg (about 5lb 13oz) on Thursday night and has grown too big to be living in the cot so was upgraded yesterday into a swinging crib. It's beginning to look like his own private bedroom in the corner of High Care!
Monday, 1 October 2007
1/10/07
Elis has been doing ok again the last few days. He's had more blood cultures come back clear and had another Lumber Puncture on Friday which is also clear for infection, so hopefully they'll stop his antibiotics tomorrow and he can get on with the business of being a growing baby. He weighed in on Thursday night at 2.56kg (5lb 10oz) so is back to where he was before his stint back in ITU, which is good.
He's had a few visits from a physiotherapist to help with positioning and development, and also a Speech and Language Therapist came to see him today to advise on how we can help him now learn how to feed from a bottle. He needs to be able to have a more satisfying feed than via the tube when I'm not around (plus we have a freezer full of milk that he needs to learn how to drink!).
He's had a really 'nosey' day today, really interested in everything going on in the unit and was awake for hours. He should sleep well tonight!
He's had a few visits from a physiotherapist to help with positioning and development, and also a Speech and Language Therapist came to see him today to advise on how we can help him now learn how to feed from a bottle. He needs to be able to have a more satisfying feed than via the tube when I'm not around (plus we have a freezer full of milk that he needs to learn how to drink!).
He's had a really 'nosey' day today, really interested in everything going on in the unit and was awake for hours. He should sleep well tonight!
Thursday, 27 September 2007
27/9/07
Elis had continued to do well over the weekend and had a really good day on Monday, even giving a good performance for the physiotherapists (photos to follow) but has given us a run for our money again over the last couple of days.
On Tuesday morning a blood test showed that his infection markers were up again. Although he was still clinically well, the consultant started him on an oral antibiotic whilst samples were taken for analysis to identify the cause and location of the infection. We then had a phonecall at 2.30 in the morning yesterday to say that he wasn't very well and would we like to go in. What a nightmare all over again.
Elis had gone from being fine at the beginning of the evening to going downhill within an hour, needing more oxygen and then being bagged, really labouring to breathe and his temperature was very unstable. By the time Glyn and I arrived at 3.20am, he was back in an incubator on CPAP and had been given IV fluids. The consultant on call had been contacted, and emergency chest Xray taken and more IV antibiotics prescribed. The fear was that he had gone down so very fast and they didn't know how bad he was going to get. Thankfully the Xray showed no evidence of a pneumothorax and he seemed to stabilise over night with his oxygen requirements coming down from 100% to 53% by morning.
By the time the consultant and doctors came for Ward Rounds, Elis had become alert enough to realise that he had the nasal assembly stuck to his nose again and was starving hungry and he was seriously unhappy about it. The first thing the consultant said was to try him back on low-flow and feed him!! Sure enough, he settled again once on low-flow and his oxygen requirements went down from 1 litre to 0.6 almost immediately. After rounds were finished, he then breastfed like he hadn't been fed for a week and was then content again.
Early indications from microbiology are that he has a urinary tract infection, so hopefully his lungs have been spared this time but we should get more results back today and can then amend his antibiotics accordingly.
Tests during the week had shown that Elis has become steroid dependant following this latest course of Dexamethazone, and even with the Dex that he is being given, his steroid levels are lower than the body should naturally make. A specialist Endochrinologist has been consulted to find out how they can now ween him off and boost his system into making its own steroids again, and the plan had been to slowly change the Dex to Hydrocortizone (in a dose that needs to be specially made for him and sent to the hospital) and then gradually reduce the dose. However, with this latest infection, his base levels of steroid are so low that it makes it very difficult to fight any illness. As a result, Elis was started on the Hydrocortizone yesterday at three times the normal dose, in addition to the Dex. We'll worry about the longer-term effects later.
Anyway, he got through the day without further incident but was really cranky again by the evening. He seems to be enjoying his new 'Rainforest Soother' which plays music and has lights and moving parts to watch and is absolutely fascinated by his reflection in a mirror.
It certainly wasn't how we had planned to celebrate his 100 day birthday - mum had even made a birthday cake for the staff in accordance with tradition (allegedly), but at least he had a chance to enjoy his birthday presents!
On Tuesday morning a blood test showed that his infection markers were up again. Although he was still clinically well, the consultant started him on an oral antibiotic whilst samples were taken for analysis to identify the cause and location of the infection. We then had a phonecall at 2.30 in the morning yesterday to say that he wasn't very well and would we like to go in. What a nightmare all over again.
Elis had gone from being fine at the beginning of the evening to going downhill within an hour, needing more oxygen and then being bagged, really labouring to breathe and his temperature was very unstable. By the time Glyn and I arrived at 3.20am, he was back in an incubator on CPAP and had been given IV fluids. The consultant on call had been contacted, and emergency chest Xray taken and more IV antibiotics prescribed. The fear was that he had gone down so very fast and they didn't know how bad he was going to get. Thankfully the Xray showed no evidence of a pneumothorax and he seemed to stabilise over night with his oxygen requirements coming down from 100% to 53% by morning.
By the time the consultant and doctors came for Ward Rounds, Elis had become alert enough to realise that he had the nasal assembly stuck to his nose again and was starving hungry and he was seriously unhappy about it. The first thing the consultant said was to try him back on low-flow and feed him!! Sure enough, he settled again once on low-flow and his oxygen requirements went down from 1 litre to 0.6 almost immediately. After rounds were finished, he then breastfed like he hadn't been fed for a week and was then content again.
Early indications from microbiology are that he has a urinary tract infection, so hopefully his lungs have been spared this time but we should get more results back today and can then amend his antibiotics accordingly.
Tests during the week had shown that Elis has become steroid dependant following this latest course of Dexamethazone, and even with the Dex that he is being given, his steroid levels are lower than the body should naturally make. A specialist Endochrinologist has been consulted to find out how they can now ween him off and boost his system into making its own steroids again, and the plan had been to slowly change the Dex to Hydrocortizone (in a dose that needs to be specially made for him and sent to the hospital) and then gradually reduce the dose. However, with this latest infection, his base levels of steroid are so low that it makes it very difficult to fight any illness. As a result, Elis was started on the Hydrocortizone yesterday at three times the normal dose, in addition to the Dex. We'll worry about the longer-term effects later.
Anyway, he got through the day without further incident but was really cranky again by the evening. He seems to be enjoying his new 'Rainforest Soother' which plays music and has lights and moving parts to watch and is absolutely fascinated by his reflection in a mirror.
It certainly wasn't how we had planned to celebrate his 100 day birthday - mum had even made a birthday cake for the staff in accordance with tradition (allegedly), but at least he had a chance to enjoy his birthday presents!
Saturday, 22 September 2007
22/9/07
Elis is still behaving himself, spending his days sleeping and feeding, interspersed with a bit of crying. All normal baby behaviour really. What a relief!
Thursday, 20 September 2007
20/9/07
Elis has kept up his miraculous recovery over the last few days and has remained on low-flow with oxygen requirements from 0.2-0.8. He's discovered that he can scream and have a tantrum now if he doesn't get feed fast enough but has been feeding really well. In fact, he has done nothing today except feed, scream and sleep. He didn't even appreciate our efforts at making life more interesting for him by putting him in his car seat for a change of scenery!
Tuesday, 18 September 2007
18/9/07
Elis truly is a little miracle. He was moved into High Care again last night and put back onto CPAP. He hated it and fought against it so hard that they decided to give him a try on low-flow. Well, that seemed to be what he was after and his oxygen came down as low as 0.4 litre, which is lower than it had ever been.
This morning he was moved into an open incubator and then surprised everyone even further by having a good long breastfeed, which fixed his grumps as he was no longer starving hungry! Unsurprisingly, he had lost a few hundred grams in weight during the last week, so he's got a bit of catching up to do.
Once he was no longer grouchy, he settled down for a good read and then a snooze. He was so relaxed and breathing so well that his oxygen came down to an amazing 0.2 litre. The doctors are absolutely gobsmacked! Although we accept that the steroids have to take a lot of the credit, we hope so hard that he doesn't slide back too far the other way.
Anyway, he's done us all proud for his 3rd month birthday.
This morning he was moved into an open incubator and then surprised everyone even further by having a good long breastfeed, which fixed his grumps as he was no longer starving hungry! Unsurprisingly, he had lost a few hundred grams in weight during the last week, so he's got a bit of catching up to do.
Once he was no longer grouchy, he settled down for a good read and then a snooze. He was so relaxed and breathing so well that his oxygen came down to an amazing 0.2 litre. The doctors are absolutely gobsmacked! Although we accept that the steroids have to take a lot of the credit, we hope so hard that he doesn't slide back too far the other way.
Anyway, he's done us all proud for his 3rd month birthday.
Monday, 17 September 2007
17/9/07
Not much has changed today, for which I guess we should be grateful. His feeds have increased back to his proper amount and is being given to him via a tube on an hourly basis rather than continuously. He still seems to be desperately hungry though and wanting to suck anything that comes within range of his mouth.
He had stabilised enough today to come out of his incubator for a little cuddle this afternoon. Hopefully he'll remain stable enough for the consultants to start tinkering with his ventilation again tomorrow and reducing his steroids.
He had stabilised enough today to come out of his incubator for a little cuddle this afternoon. Hopefully he'll remain stable enough for the consultants to start tinkering with his ventilation again tomorrow and reducing his steroids.
Sunday, 16 September 2007
16/9/07 afternoon...
Elis had a settled night and by morning his pressures and oxygen requirements had both come down significantly.
At ward rounds the doctors decided to stop giving him any further morphine so that he would be fully awake and more likely to make the effort to breath. By 2.30pm the consultant had removed the tube that had allowed the oxygen to be blown into his lungs. He is now on a nasal type of oxygen support and the blood gas tests will later give an indication of how well he is managing to expel his C02 gases. These are real steps forward but as the consultant said, "He is not out of the woods yet." We hope he is in the bushes though....
Josie said that by the time they had finished messing about with him and giving him his meds he was a bit grumpy but who can blame him? He is now sleeping and hopefully regaining his strength.
At ward rounds the doctors decided to stop giving him any further morphine so that he would be fully awake and more likely to make the effort to breath. By 2.30pm the consultant had removed the tube that had allowed the oxygen to be blown into his lungs. He is now on a nasal type of oxygen support and the blood gas tests will later give an indication of how well he is managing to expel his C02 gases. These are real steps forward but as the consultant said, "He is not out of the woods yet." We hope he is in the bushes though....
Josie said that by the time they had finished messing about with him and giving him his meds he was a bit grumpy but who can blame him? He is now sleeping and hopefully regaining his strength.
Saturday, 15 September 2007
15/9/07
Elis has shown some very slight signs of improvement today. His doctor decided that they would reduce some of the drugs so that he would wake up a bit more and see how he coped. They have also been constantly tweaking the instruments throughout the day so that Elis would do more breathing on his own with support from the equipment when he stops breathing for too long! We wait to see how he manages over the next 24hrs.
Friday, 14 September 2007
14/9/07
The doctors are concerned that Elis may have another infection. Samples have been sent away to grow cultures and the results should be back in 48hrs. In the meantime he has been given another antibiotic to try to preempt further complications.
There has been little progress today but they have reduced the paralyzing drug which gave him time to rest while the antibiotics started to work. This afternoon he has been awake for short periods, regained some movement in his limbs and responded to Josie's voice once again. Fortunately, he is not showing signs of distress at the moment even though he is still intubated. The respirator is also giving him 5 breaths per minute to keep the capillaries in his lungs open and he has taken the occasional breath on his own but it will take a few days for the steroids to take affect and for him to regain his breathing reflex once again.
It's a waiting game and we continue to hope for a happy outcome but his condition is still very fragile. Josie and Glyn will spend their 4th night in hospital with him tonight.
There has been little progress today but they have reduced the paralyzing drug which gave him time to rest while the antibiotics started to work. This afternoon he has been awake for short periods, regained some movement in his limbs and responded to Josie's voice once again. Fortunately, he is not showing signs of distress at the moment even though he is still intubated. The respirator is also giving him 5 breaths per minute to keep the capillaries in his lungs open and he has taken the occasional breath on his own but it will take a few days for the steroids to take affect and for him to regain his breathing reflex once again.
It's a waiting game and we continue to hope for a happy outcome but his condition is still very fragile. Josie and Glyn will spend their 4th night in hospital with him tonight.
Thursday, 13 September 2007
13/9/07
No change today in Elis' condition but fortunately he is no worse. The doctors continue to tweak the drugs and complex machinery to provide Elis with the support he needs. They plan to give him his first dose of steroids later tonight in preparation for taking him off the ventilator as soon as they feel he may be able to cope. Josie and Glyn remain in hospital with Elis and we continue to hope and pray.....
Wednesday, 12 September 2007
12/9/07
Sadly Elis' condition has deteriorated suddenly and he is now back in an incubator in Intensive Care and on a respirator again. Yesterday 's x-ray showed that although his left lung was looking clear of infection his right lung was now compromised by a different infection. The doctors are giving him powerful antibiotics but they have described his condition as critical. Josie and Glyn are at his bedside and are staying in hospital with him for a second night.
Tuesday, 11 September 2007
11/9/07
We've been back on the roller coaster with Elis this week. He seems to have been relatively stable without actually improving. Blood tests yesterday showed that the antibiotics have cleared his chest infection so those meds stopped yesterday afternoon but he's had so much blood taken this week, he needed another blood transfusion last night.
His oxygen requirement hasn't really reduced over the week and he started getting more unstable yesterday evening and was put back onto CPAP, which he doesn't like. During the night he needed to be bagged twice which seems like a big step backwards. The nurse this morning said that he's been a bit more stable in the last few hours.
I'll be going in for Ward Rounds shortly to hear what the consultant has to say.
His oxygen requirement hasn't really reduced over the week and he started getting more unstable yesterday evening and was put back onto CPAP, which he doesn't like. During the night he needed to be bagged twice which seems like a big step backwards. The nurse this morning said that he's been a bit more stable in the last few hours.
I'll be going in for Ward Rounds shortly to hear what the consultant has to say.
Wednesday, 5 September 2007
5/9/07
Fortunately Elis has held his own over the last 24 hours and is relatively stable. His oxygen requirement is still very high but has come down slightly since yesterday. He seems a bit more relaxed than he was yesterday and even took 10ml of milk from a syringe this afternoon.
Hopefully he'll have another decent nights rest and start to get stronger again tomorrow.
Hopefully he'll have another decent nights rest and start to get stronger again tomorrow.
Tuesday, 4 September 2007
4/9/07
Elis seemed to be doing well on Sunday and Monday. We went out for another walk on Sunday with Nain, Taid and Anti Angharad (and two nurses), although he didn't really wake up for it - we enjoyed it though!
Yesterday I gave him a bath, which he enjoyed (his feet really stank!) and was awake enough to have two really good feeds during the day. Unfortunately, his health has deteriorated over night and he was having more serious desats and bradys and has had lots of thick secretions again. He had a number of blood tests and another chest x-ray early this morning and it looks as though he has a chest infection, possibly pneumonia. His x-ray shows that his lungs are worse now than they were back in July when the last one was done.
He's been put back on CPAP which he is hating, but it has brought his CO2 back down a little and is giving him a bit more breathing support than the low flow. He's on 100% oxygen already though so if he gets much worse, he could end up back on the ventilator, which we desperately hope wont happen. The started him straight away on two types of IV antibiotic to try to fight the infection even though they don't know yet what the infection is. Now we just cross our fingers that they start working before he gets any worse.
Yesterday I gave him a bath, which he enjoyed (his feet really stank!) and was awake enough to have two really good feeds during the day. Unfortunately, his health has deteriorated over night and he was having more serious desats and bradys and has had lots of thick secretions again. He had a number of blood tests and another chest x-ray early this morning and it looks as though he has a chest infection, possibly pneumonia. His x-ray shows that his lungs are worse now than they were back in July when the last one was done.
He's been put back on CPAP which he is hating, but it has brought his CO2 back down a little and is giving him a bit more breathing support than the low flow. He's on 100% oxygen already though so if he gets much worse, he could end up back on the ventilator, which we desperately hope wont happen. The started him straight away on two types of IV antibiotic to try to fight the infection even though they don't know yet what the infection is. Now we just cross our fingers that they start working before he gets any worse.
Saturday, 1 September 2007
1/9/07
Elis has been a good boy again today and has been looking gorgeous in a lovely little number chosen for him by his soon-to-be neighbour, Dafydd - thank you! It's the first of his own non-premie clothes that he's worn as he's now getting big enough to wear 'proper' clothes!
This afternoon he had a 'cup feed' which was interesting to witness - he was like a little cat, lapping up his milk. He was wide awake afterwards and spent ages reading his book - he was desperately fighting off sleep just to continue staring at the pictures!
This afternoon he had a 'cup feed' which was interesting to witness - he was like a little cat, lapping up his milk. He was wide awake afterwards and spent ages reading his book - he was desperately fighting off sleep just to continue staring at the pictures!
Friday, 31 August 2007
31/8/07
He's past the two kilo mark! To be more precise, last night he weighed in at 2.145kg which is 4lb 11.5oz - an amazing 5.5oz increase in three days. He must be be guzzling more during his daily breastfeed than we had given him credit for.
He had another blood transfusion on Wednesday evening as his HB had dropped again with all the blood he's had taken for routine tests during the last few weeks. The transfusion went fine and he's been fairly stable all week on low-flow. His desats certainly seem to have been more infrequent and less severe.
His caffeine has been stopped today but he is still on seven different medications every day. However, the hospital staff are pleased with his progress and are talking about starting to plan his discharge with a view to him being able to come home within the next four to eight weeks if he can maintain his current progress...
He had another blood transfusion on Wednesday evening as his HB had dropped again with all the blood he's had taken for routine tests during the last few weeks. The transfusion went fine and he's been fairly stable all week on low-flow. His desats certainly seem to have been more infrequent and less severe.
His caffeine has been stopped today but he is still on seven different medications every day. However, the hospital staff are pleased with his progress and are talking about starting to plan his discharge with a view to him being able to come home within the next four to eight weeks if he can maintain his current progress...
Monday, 27 August 2007
27/8/07
What an absolute angel Elis has been today. He's been well behaved and somehow, although we've not been practicing, he seemed to know exactly what he wanted and how to get it today when it came to feed time... He surprised all the staff as well as me with his stamina when it came to feeding but exhausted himself after about 15 minutes and looked so cute and content when I eventually tucked him back up in his cot...
26/8/07
Well, what a palava! Elis' trip out turned into something of a Neonatal Unit Event involving all the staff - the preparations were more like a NASA launch operation than those for a 10 minute stroll with a baby.
Elis was all bundled up in layers of clothes so that he looked like he was stuffed but still looked a bit lost in the pushchair. We had his sats monitor tucked in the hood and his oxygen cylinder in a bag on the handle and with Glyn, Dave, Adity and two nurses with us set off for the great outdoors.
Initially he seemed a bit blinded by the brightness but soon settled down and was very happy with his adventure, as were everyone else so it was an all-round success.
His sats were still good when we got back to the unit and he was quite content sitting in his pushchair. The adventure wore him out a bit so he had a very quiet afternoon and evening!
Elis was all bundled up in layers of clothes so that he looked like he was stuffed but still looked a bit lost in the pushchair. We had his sats monitor tucked in the hood and his oxygen cylinder in a bag on the handle and with Glyn, Dave, Adity and two nurses with us set off for the great outdoors.
Initially he seemed a bit blinded by the brightness but soon settled down and was very happy with his adventure, as were everyone else so it was an all-round success.
His sats were still good when we got back to the unit and he was quite content sitting in his pushchair. The adventure wore him out a bit so he had a very quiet afternoon and evening!
Saturday, 25 August 2007
25/8/07
He's done well again during the past few days despite needing to be bagged again on Wednesday evening. He's been on low flow since Thursday evening although he still seems to desaturate a bit when he has his feeds.
The good news is that he hit 4lb's at Thursday night's weigh in (1.835kg) so we celebrated again with another bottle of bubbly! He was given another bath this morning as he was pretty stinky already and again, he seemed to enjoy it but was shattered this afternoon when I went in to see him.
One of the nurses phoned me this morning to see if we had a pram for him yet as they thought that as the weather was so nice and they weren't rushed off their feet that we might like to take Elis out for a little walk around the hospital grounds! They'd get a little bottle of oxygen and a portable sats monitor then come out with us in case anything went wrong. Unfortunately we didn't have a pushchair so couldn't go out. Needless to say, the first stop after the hospital visit was Mothercare to buy one so we'll be set if the opportunity arises tomorrow.
The other surprise when we got to the unit was that Elis has been taken out of his incubator and is currently in a cot and looking lovely with his clean hair! This is great as it suggests that not only is he able to regulate his temperature properly now, but also that they expect him to spend most of his time now on low flow rather than CPAP. His feeds have also gone back to three-hourly which is another step in the right direction as it doesn't seem to make any difference to his desats.
The good news is that he hit 4lb's at Thursday night's weigh in (1.835kg) so we celebrated again with another bottle of bubbly! He was given another bath this morning as he was pretty stinky already and again, he seemed to enjoy it but was shattered this afternoon when I went in to see him.
One of the nurses phoned me this morning to see if we had a pram for him yet as they thought that as the weather was so nice and they weren't rushed off their feet that we might like to take Elis out for a little walk around the hospital grounds! They'd get a little bottle of oxygen and a portable sats monitor then come out with us in case anything went wrong. Unfortunately we didn't have a pushchair so couldn't go out. Needless to say, the first stop after the hospital visit was Mothercare to buy one so we'll be set if the opportunity arises tomorrow.
The other surprise when we got to the unit was that Elis has been taken out of his incubator and is currently in a cot and looking lovely with his clean hair! This is great as it suggests that not only is he able to regulate his temperature properly now, but also that they expect him to spend most of his time now on low flow rather than CPAP. His feeds have also gone back to three-hourly which is another step in the right direction as it doesn't seem to make any difference to his desats.
Tuesday, 21 August 2007
21/8/07
He's still piling on the pounds - last night's weigh in clocked him at 1.765kg (3lb 13.5oz) so his sleepy days are paying off! He's still having desats after feed times so they have tried putting him back on two-hourly feeds rather than every three hours, but to be honest, it doesn't seem to have made things any better. He's doing well switching between low flow and CPAP still and has just done a good 24hours on low flow.
He's been getting a bit stinky as it's a while since his last bath, so we gave him another quick dunk in the bath this morning, which he seemed to take quite well. I left him sleeping soundly afterwards though as he was pretty shattered after his exciting morning!
He's been getting a bit stinky as it's a while since his last bath, so we gave him another quick dunk in the bath this morning, which he seemed to take quite well. I left him sleeping soundly afterwards though as he was pretty shattered after his exciting morning!
Saturday, 18 August 2007
18/8/07
His blood transfusion went fine on Wednesday evening but didn't seem to make him any more stable on Thursday, much to everyone's dismay. He's been on and off low flow and (understandably) seems to prefer it to CPAP (it must be so much more comfortable) although the CPAP gives him more of a rest. He's been resting a lot and growing well. He put on another 110g over three days last week and now weighs a staggering 1.625kg (3lb 9oz). He's still having little goes at breastfeeding and is doing well but he can't seem to stay awake long enough to have a really good crack at it!!
Wednesday, 15 August 2007
15/8/07
Well, he's done well. He went onto low-flow again at about 12.30 yesterday when he came out of his incubator for cuddles and breastfeeding lessons, which he managed half an hour of! He stayed out with me for hours and another feed and was doing well but we expected that he'd get tired and have to go back on CPAP for a rest. However, he surprised us all by staying well all night and most of today.
He's back on CPAP now though because he's having another blood transfusion now and he started having dips with all the prodding and poking he was having. He'll have a rubbish night but hopefully be all the better for it tomorrow.
He's back on CPAP now though because he's having another blood transfusion now and he started having dips with all the prodding and poking he was having. He'll have a rubbish night but hopefully be all the better for it tomorrow.
Monday, 13 August 2007
13/8/07
What a difference a day makes...!
Our little boy is a star!! Having just tried out oral feeding for the first time yesterday, he had two whole feeds via bottle over night and then had 10 minutes breastfeeding this afternoon! He's certainly not slow when it comes to learning how to feed!!
Even better is that to enable him to breastfeed, he had another go on low-flow and coped fine for the few hours I had him out of the incubator. One of the advantages of his time on low-flow is that he is much easier to handle and cuddle and we get to see his gorgeous face at last!
As it was a big adventure for him, he went back onto CPAP when he went back in his box so that he could rest again. He has barely moved since he went back in. Unfortunately, he was so tired, he's had a few brady's this afternoon (heart rate slowing) so hopefully he'll have a really restful night and be ready to have another go on low flow and feeding tomorrow...
Ahhh, happy day - I feel like a proper mummy at last.
Our little boy is a star!! Having just tried out oral feeding for the first time yesterday, he had two whole feeds via bottle over night and then had 10 minutes breastfeeding this afternoon! He's certainly not slow when it comes to learning how to feed!!
Even better is that to enable him to breastfeed, he had another go on low-flow and coped fine for the few hours I had him out of the incubator. One of the advantages of his time on low-flow is that he is much easier to handle and cuddle and we get to see his gorgeous face at last!
As it was a big adventure for him, he went back onto CPAP when he went back in his box so that he could rest again. He has barely moved since he went back in. Unfortunately, he was so tired, he's had a few brady's this afternoon (heart rate slowing) so hopefully he'll have a really restful night and be ready to have another go on low flow and feeding tomorrow...
Ahhh, happy day - I feel like a proper mummy at last.
Sunday, 12 August 2007
12/8/07
Elis has reached another milestone today - he had his first oral feed! He is usually fed through a tube which goes from his mouth right into his stomach (it's the green one you can see on the photos), but today he took 10ml from a syringe in his mouth!
His corrected age is now about 34 weeks gestation (still six weeks before he should have been born) and it is usually in the next few weeks that unborn babies begin to develop the 'suck' reflex. Elis was getting hungry as his 12pm feed approached and was showing signs of wanting to feed himself so the nurse and I propped him up in his incubator and stuck the end of a syringe of milk in his mouth. Hey presto, he worked out how to breathe, suck the milk and then swallow it all at once!! It was really lovely to see and he surprised us both (and himself, I think). He polished off 10ml in under five minutes but was pretty shattered after the effort so the rest of it went down his tube.
After his momentus lunch, he came out for some 'kangaroo care' (skin to skin cuddle) for the afternoon and was very well behaved.
His corrected age is now about 34 weeks gestation (still six weeks before he should have been born) and it is usually in the next few weeks that unborn babies begin to develop the 'suck' reflex. Elis was getting hungry as his 12pm feed approached and was showing signs of wanting to feed himself so the nurse and I propped him up in his incubator and stuck the end of a syringe of milk in his mouth. Hey presto, he worked out how to breathe, suck the milk and then swallow it all at once!! It was really lovely to see and he surprised us both (and himself, I think). He polished off 10ml in under five minutes but was pretty shattered after the effort so the rest of it went down his tube.
After his momentus lunch, he came out for some 'kangaroo care' (skin to skin cuddle) for the afternoon and was very well behaved.
Friday, 10 August 2007
10/8/07
Elis has been generally well behaved over the last couple of days. His oxygen requirement has come down to 40-60% and he hasn't needed bagging, which is a vast improvement on a week ago. He's had an eye test and a heart scan in the last few days, both of which were reasonable. He's put on another 65g since Monday and is feeding well and looking good!
Tuesday, 7 August 2007
7/8/07
Today is a day of celebration... After seven weeks in Intensive Care, Elis' good behaviour over the last couple of days and has been rewarded by being moved out of Intensive Care and into High Care. He hasn't suddenly got better or anything, but they don't consider him to need one-to-one care at the moment, so in High Care each nurse looks after three babies.
As a double celebration today, he was weighed last night and clocked in at 1.360kg, which means that he has hit the magical 3lb marker already. I think most of the weight is still going on his cheeks, but it also means that his feeds have now been increased to 28ml every three hours. I bought a bottle of Champagne and a chocolate cake on the way home, so am now off to indulge...
As a double celebration today, he was weighed last night and clocked in at 1.360kg, which means that he has hit the magical 3lb marker already. I think most of the weight is still going on his cheeks, but it also means that his feeds have now been increased to 28ml every three hours. I bought a bottle of Champagne and a chocolate cake on the way home, so am now off to indulge...
Sunday, 5 August 2007
5/8/07
Just a quick one to say that despite an almighty desaturation on Friday morning when his blood oxygen reached new lows of 2% and he worried all the staff, he has actually had a really good few days and been very settled.
He was weighed on Thursday night and was 1.235kg (2lb 11oz) so he's now being fed 17ml of milk every two hours and seems to be coping with that fine. Hopefully next week we'll be able to celebrate passing the 3lb mark!
He was weighed on Thursday night and was 1.235kg (2lb 11oz) so he's now being fed 17ml of milk every two hours and seems to be coping with that fine. Hopefully next week we'll be able to celebrate passing the 3lb mark!
Thursday, 2 August 2007
2/8/07
There was much excitment afoot today in the ICU as Elis had his first bath!! Apparently he thoroughly enjoyed his five minutes in the washing up bowl and behaved beautifully. He is now dressed in a babygrow that fits him, courtesy of Aunty Adity and Uncle Dave, and a new hat courtesy of his grandma's newfound knitting skills. He looks really cute - like a real (mini) baby!
He had an ultrasound scan on his brain this afternoon and all looks ok, which is a great relief. I then had him out for a cuddle but he was so exhausted from his exciting morning that he hardly moved.
He had an ultrasound scan on his brain this afternoon and all looks ok, which is a great relief. I then had him out for a cuddle but he was so exhausted from his exciting morning that he hardly moved.
Wednesday, 1 August 2007
1/8/07
He's still being a good boy! There's not really much more to say (and we don't want to tempt fate!) but he's been very settled today and has had his oxygen requirement down to about 60% for much of the day. He's still had lots of secretions today but they don't seem to have caused him much trouble so far.
When we arrived at the hospital one of the nurses had dressed him for the first time in his own clothes!! It is a babygrow for pre-term babies but still looks a bit big on him!
When we arrived at the hospital one of the nurses had dressed him for the first time in his own clothes!! It is a babygrow for pre-term babies but still looks a bit big on him!
Tuesday, 31 July 2007
31/7/07
Elis has been a bit better today and has only been dipping when he dislodges his prongs from his nose. He has had his caffeine medication suspended as they tested his caffeine levels yesterday and they were off the scale! The caffeine is supposed to be acting as a stimulant to remind him to breathe but can also cause reflux, which they think could be causing some of his desaturations. He was given some Gaviscon yesterday which they think helped him. It'll take a few days for the caffeine to clear his body so we'll see what happens...
Monday, 30 July 2007
30/7/07
Today has been a funny old day really. Elis has hit some real highs and real lows during the day, whereas I have gone for consistancy and not been able to drag myself up from the lows.
When I arrived at the hospital this morning, the news was still good as Elis had continued his good behaviour through the night and had a settled start to the day. Next thing I know, he is desaturating and ends up being bagged three times in about an hour. After a run of stability, this sudden slide hit me hard, especially as it followed right after the consultant saying how disappointed he was with Elis' progress on this course of steroids.
Elis did settle down again and whilst I was out for lunch, his oxygen came down as low as 62%, which is lower than it has been for well over a week. However, just before I came back into intensive care, the nurse changed his nappy, which he was so unhappy about, he needed bagging again. Once again though, once he was settled down again, his oxygen requirement came down to about 70%.
I have just phoned the hospital to get an update, and unbelievably, he has been fine all evening and his oxygen is currently down to 60% and his blood oxygen saturation at 100%, which is almost unheard of based on his recent performance. It's so strange that he can do so well and so poorly in one day. Again, we're left hoping that he can keep up the good performance...
When I arrived at the hospital this morning, the news was still good as Elis had continued his good behaviour through the night and had a settled start to the day. Next thing I know, he is desaturating and ends up being bagged three times in about an hour. After a run of stability, this sudden slide hit me hard, especially as it followed right after the consultant saying how disappointed he was with Elis' progress on this course of steroids.
Elis did settle down again and whilst I was out for lunch, his oxygen came down as low as 62%, which is lower than it has been for well over a week. However, just before I came back into intensive care, the nurse changed his nappy, which he was so unhappy about, he needed bagging again. Once again though, once he was settled down again, his oxygen requirement came down to about 70%.
I have just phoned the hospital to get an update, and unbelievably, he has been fine all evening and his oxygen is currently down to 60% and his blood oxygen saturation at 100%, which is almost unheard of based on his recent performance. It's so strange that he can do so well and so poorly in one day. Again, we're left hoping that he can keep up the good performance...
Sunday, 29 July 2007
29/7/07
Elis has had a good weekend, having only been bagged once, early yesterday morning, and I've had cuddles both yesterday and today. He was wrapped up snug this morning at 10.30 and hardly moved until 5pm when I changed his nappy etc. before getting him out for his (my) cuddle. It actually made for such a quiet visit that I sat by his incubator whilst he slept and replied to some emails on my pda!
Friday, 27 July 2007
27/7/07
Elis has been relatively stable again over the last two days although he has still required bagging a couple of times a night. His oxygen requirement has come down slightly and despite the bagging instances, his blood oxygen saturation is generally much more stable.
He has put on another 60 grams (about 2oz) over the past 10 days, which isn't a huge amount, but at least its going in the right direction! He was really active this morning fighting his prongs and his feeding tube and was having a really good look around. He's got so good at grabbing his feeding tube and pulling it out that the nurses try to make it harder by putting mitts on him but he still pulled it out twice this morning! Attaboy!!!
He has put on another 60 grams (about 2oz) over the past 10 days, which isn't a huge amount, but at least its going in the right direction! He was really active this morning fighting his prongs and his feeding tube and was having a really good look around. He's got so good at grabbing his feeding tube and pulling it out that the nurses try to make it harder by putting mitts on him but he still pulled it out twice this morning! Attaboy!!!
Wednesday, 25 July 2007
25/7/07
Elis has been relatively stable over the last couple of days and the steroids seem to be taking effect again as his oxygen requirement has come down a bit this evening. He was very happy out today for a cuddle and had his first cuddle with Glyn.
Monday, 23 July 2007
23/7/07
It's all been a bit up and down for Elis today. He didn't have a good night and was bagged once, although he settled a bit this morning - until I arrived and his blood desaturated and heart slowed down! I think some secretions in his throat can be blamed for that as his breathing was ok when I had him out of the incubator for a little cuddle.
For the first time he was lifting his head right up and trying to turn it from one side to the other (repeatedly!). Since he has about three inches of nasal assembly attached to his nose to help him breathe, this proved troublesome as he kept pulling his prongs out of his nose and we'd have to chase him to reconnect the oxygen each time he turned his head. Eventually he won and I just held him in my arms on his back - he couldn't avoid the prongs that way!
He's had more blood tests today which indicate that he is still clear of systemic infection, but he needs another blood transfusion, which might help keep his saturation levels higher. Transfusion number six is underway even as I type. I've just phoned the hospital and so far it has gone fine.
However, as his breathing doesn't seem to have improved over the last week, the consultant currently leading his care has concluded that we should begin another series of steroids to reduce the inflamation in his lungs and give them another chance to start repairing. The first dose was given to him this evening, so fingers crossed that he will receive the full benefits and avoid the side effects this time around.
For the first time he was lifting his head right up and trying to turn it from one side to the other (repeatedly!). Since he has about three inches of nasal assembly attached to his nose to help him breathe, this proved troublesome as he kept pulling his prongs out of his nose and we'd have to chase him to reconnect the oxygen each time he turned his head. Eventually he won and I just held him in my arms on his back - he couldn't avoid the prongs that way!
He's had more blood tests today which indicate that he is still clear of systemic infection, but he needs another blood transfusion, which might help keep his saturation levels higher. Transfusion number six is underway even as I type. I've just phoned the hospital and so far it has gone fine.
However, as his breathing doesn't seem to have improved over the last week, the consultant currently leading his care has concluded that we should begin another series of steroids to reduce the inflamation in his lungs and give them another chance to start repairing. The first dose was given to him this evening, so fingers crossed that he will receive the full benefits and avoid the side effects this time around.
Sunday, 22 July 2007
22/7/07
Today Elis has been tried on two-hourly feeds, which he tolerated for most of the day but then decided he'd had enough and started to desaturate and have episodes of his heart rate slowing. Once he was back on continuous feeds he settled back down again and was lovely when Glyn and I were there with him. They'll try changing his feeding pattern again tomorrow and see what happens. The plan is to still try to make progress with him in other areas whilst his lungs (hopefully) start the slow process of repairing.
Saturday, 21 July 2007
Friday, 20 July 2007
Adding comments
A number of you have let me know that you've had problems leaving comments on the blog... Sorry!!! The situation should now be resolved!
20/7/07
Today was not too bad despite the fact that it would seem that Elis has e.coli in his lungs again/still (I'm not sure which) as well as another bacteria, but he's still on four different types of antibiotic so hopefully it shouldn't become a problem. Nevertheless, the consultant has requested weekly tests to see what is growing in his lungs.
The good news is that he has managed to increase his own HB level (red blood cell count) in the last day so if he can keep this up he should be able to postpone his next blood transfusion.
The other bit of good news is that as he was pretty stable again today, he came out for another cuddle with me this afternoon!
The good news is that he has managed to increase his own HB level (red blood cell count) in the last day so if he can keep this up he should be able to postpone his next blood transfusion.
The other bit of good news is that as he was pretty stable again today, he came out for another cuddle with me this afternoon!
Thursday, 19 July 2007
19/7/07
He's been a good boy today! He needed bagging this morning but that was because he desaturated when given his IV antibiotics. It must hurt as it goes in because he has done the same thing before.
The unit was really busy today so he was pretty much left alone all day. It was all worthwhile because then I had him out for skin to skin cwtches for a couple of hours. Like last week, he settled down relatively quickly and then was as happy as the proverbial pig! His prongs weren't even in his nose for most of the time yet still his oxygen saturation was good. Ahhhh....
The unit was really busy today so he was pretty much left alone all day. It was all worthwhile because then I had him out for skin to skin cwtches for a couple of hours. Like last week, he settled down relatively quickly and then was as happy as the proverbial pig! His prongs weren't even in his nose for most of the time yet still his oxygen saturation was good. Ahhhh....
Wednesday, 18 July 2007
18/7/07 - 1 month old
Things haven't really changed much for Elis today, except he is now officially one month old! He's been ok today, although has been bagged on two occasions when his oxygen saturation levels dipped too low for too long. He settled down quite nicely whilst I was there during the day and we're going back in to see him this evening - he's been told his grandparents are coming in so must be on best behaviour!
Tuesday, 17 July 2007
17/7/07
Things have been a bit more settled for Elis today. He only had to be 'bagged' once last night and his CO2 levels have been closer to what they are tolerating with him. He is still not symptomatic of infection and his eyes are looking better than they were yesterday.
The consultant switched the ventilator back onto CPAP this morning and they tried to put a 'long prong' up Elis' nose as an alternative way of delivering ventilation support. Unfortunately the smallest tube they have is 2.5mm and Elis' nose canal is not yet big enough at the bridge. They gave it a few goes but all he got was a nose bleed. They'll try again next week when he's bigger.
Elis was weighed again this morning and has now topped the 1kg mark. He's put on 90g since Friday and now weighs 1030g. He's now getting a massive 7.1ml of milk per hour, so hopefully he'll grow enough before they try the long-prong again next week.
Another small but significant milestone today was seeing him cough for the first time. It's a really useful and important reflex for him to have, especially as he is still having problems with secretions in his lungs and throat - he certainly loosened something with his cough today!
The consultant switched the ventilator back onto CPAP this morning and they tried to put a 'long prong' up Elis' nose as an alternative way of delivering ventilation support. Unfortunately the smallest tube they have is 2.5mm and Elis' nose canal is not yet big enough at the bridge. They gave it a few goes but all he got was a nose bleed. They'll try again next week when he's bigger.
Elis was weighed again this morning and has now topped the 1kg mark. He's put on 90g since Friday and now weighs 1030g. He's now getting a massive 7.1ml of milk per hour, so hopefully he'll grow enough before they try the long-prong again next week.
Another small but significant milestone today was seeing him cough for the first time. It's a really useful and important reflex for him to have, especially as he is still having problems with secretions in his lungs and throat - he certainly loosened something with his cough today!
Monday, 16 July 2007
Photos of Elis
UPDATE 18/7/07: Some photos are now available on the picasa web album!
We're having problems with our broadband at the moment (currently skinnyband) so I can't upload photos either to this blog or to our picasa web album. As soon as we've resolved the connection speed issue, I'll publish some pics.
We're having problems with our broadband at the moment (currently skinnyband) so I can't upload photos either to this blog or to our picasa web album. As soon as we've resolved the connection speed issue, I'll publish some pics.
16/07/07
Things have taken a backward step today with Elis as he didn't have a good night and had a bad blood gas result this morning. His ventilation has been changed from CPAP to SIMV which is giving him 10 supported breaths per minute and should help clear the high levels of CO2 in his blood.
More of a concern is that they think he may have developed an infection as he has had thick secretions in his lungs again and his colour is not so good today. They have taken blood cultures and also did a lumbar puncture on him this morning. The good news is that preliminary indications from the lumbar puncture suggest no infection in the cerebral spinal fluid, but it will be 48 hours before the culture results are available to see if any bacteria grows. Meanwhile, it would seem that he does have an infection in his eyes and they are really gammy today - such a shame when he has only just started opening them regularly and having a good look around.
Just to add to his problems, it has been noted that he now has a swelling in his groin, which at the moment the doctors think is just fluid, but which can become hernias in premature babies if some bowel drops into the cavity. Just something else to keep an eye on.
Poor little thing has cannulas in both hands again now and is back on the antibiotics as a precaution until the test results are available, but he's not a happy chappy today.
More of a concern is that they think he may have developed an infection as he has had thick secretions in his lungs again and his colour is not so good today. They have taken blood cultures and also did a lumbar puncture on him this morning. The good news is that preliminary indications from the lumbar puncture suggest no infection in the cerebral spinal fluid, but it will be 48 hours before the culture results are available to see if any bacteria grows. Meanwhile, it would seem that he does have an infection in his eyes and they are really gammy today - such a shame when he has only just started opening them regularly and having a good look around.
Just to add to his problems, it has been noted that he now has a swelling in his groin, which at the moment the doctors think is just fluid, but which can become hernias in premature babies if some bowel drops into the cavity. Just something else to keep an eye on.
Poor little thing has cannulas in both hands again now and is back on the antibiotics as a precaution until the test results are available, but he's not a happy chappy today.
His first month
When Elis was first born, everyone we spoke to told us that we were in for a rocky ride or an emotional rollercoaster and that it would seem like we'd take one step forward and two steps back. They weren't kidding.
Over the first week or so, Elis managed to knock off most of his drugs and even eventually maintain his blood pressure. His single biggest problem has been his immature lungs. The doctors pushed him quite hard during the first few days to try to get him off the tube which was ventilating him, but he just couldn't cope, but then again, he was born at just about 26 weeks gestation so his lungs weren't supposed to work for a further 14 weeks! After several weeks of being repeatedly reintubated as his tube got blocked, the situation was getting more and more serious. Chest X-rays were showing his lungs to be suffering not only from being so premature, but increasing pressure damage caused by the ventilator.
After one occasion when it took the doctors half and hour to rescusitate him after his tube got blocked again, the consultant suggested that unless they could get Elis to cope without the tube, next time we could lose him. The blocked tube that they removed was sent to be cultured and the report sent back was that his lungs were infected with e.coli, which is resistant to the anti-biotics that he was being given as a precaution. The anti-biotics were changed and fortunately the infection never got into his blood stream. To help get Elis off the ventilator and thus reduce the risk of further infection, the consultant suggested trying a course of steroids, which although may have detrimental side effects in the long term, may be our only hope of giving him a long term. The steroids, if Elis responded to them, would reduce the inflamation in his lungs and buy him some time to rest, grow and begin to mend the damage to his lungs. We agreed to the steroids and fortunately, they appear to have helped without giving him many of the short-term side effects.
He was extubated two days after starting the course of steroids and so far has managed on tubes attached to his nose (rather than down his throat) for over a week and his body should now have been clear of steroids for a few days. He even had a day on 'low-flow' which is just the thin tubes providing a constant flow of oxygen to his nose. He's since gone back onto CPAP via the nasal assembly, but seems pretty stable on it most of the time. He still has his moments - his oxygen saturation dropped so far he had to be 'bagged' (manually ventilated) four times on Thursday night, but has been ok since. We've still got a long way to go until he's out of the woods, but in general, each week we're in a better place than we were the previous week.
He's having fairly regular blood transfusions as the doctors are taking blood samples more quickly than Elis can replace the blood, but he was able to tolerate breast milk when he was just a few days old, so is having the best nutrition available whenever possible. He is now stable enough to be weighed, and on Friday topped the 2lb mark when he weighed in at 940g!
He was also well enough on Thursday to finally come out of his incubator for a cuddle with his mummy!! Maybe tomorrow we can have another go...
Over the first week or so, Elis managed to knock off most of his drugs and even eventually maintain his blood pressure. His single biggest problem has been his immature lungs. The doctors pushed him quite hard during the first few days to try to get him off the tube which was ventilating him, but he just couldn't cope, but then again, he was born at just about 26 weeks gestation so his lungs weren't supposed to work for a further 14 weeks! After several weeks of being repeatedly reintubated as his tube got blocked, the situation was getting more and more serious. Chest X-rays were showing his lungs to be suffering not only from being so premature, but increasing pressure damage caused by the ventilator.
After one occasion when it took the doctors half and hour to rescusitate him after his tube got blocked again, the consultant suggested that unless they could get Elis to cope without the tube, next time we could lose him. The blocked tube that they removed was sent to be cultured and the report sent back was that his lungs were infected with e.coli, which is resistant to the anti-biotics that he was being given as a precaution. The anti-biotics were changed and fortunately the infection never got into his blood stream. To help get Elis off the ventilator and thus reduce the risk of further infection, the consultant suggested trying a course of steroids, which although may have detrimental side effects in the long term, may be our only hope of giving him a long term. The steroids, if Elis responded to them, would reduce the inflamation in his lungs and buy him some time to rest, grow and begin to mend the damage to his lungs. We agreed to the steroids and fortunately, they appear to have helped without giving him many of the short-term side effects.
He was extubated two days after starting the course of steroids and so far has managed on tubes attached to his nose (rather than down his throat) for over a week and his body should now have been clear of steroids for a few days. He even had a day on 'low-flow' which is just the thin tubes providing a constant flow of oxygen to his nose. He's since gone back onto CPAP via the nasal assembly, but seems pretty stable on it most of the time. He still has his moments - his oxygen saturation dropped so far he had to be 'bagged' (manually ventilated) four times on Thursday night, but has been ok since. We've still got a long way to go until he's out of the woods, but in general, each week we're in a better place than we were the previous week.
He's having fairly regular blood transfusions as the doctors are taking blood samples more quickly than Elis can replace the blood, but he was able to tolerate breast milk when he was just a few days old, so is having the best nutrition available whenever possible. He is now stable enough to be weighed, and on Friday topped the 2lb mark when he weighed in at 940g!
He was also well enough on Thursday to finally come out of his incubator for a cuddle with his mummy!! Maybe tomorrow we can have another go...
Elis' early arrival
I begin with an apology as some of you may not have been aware that I was pregnant in the first place, so to find out that Glyn and I now have a son called Elis may come as a bit of a surprise! The thing is, things started going a little wrong in the pregnancy in March and then went from bad to worse, so we weren't sure what the outcome would be. Anyway, he wasn't due until the end of September, so we thought we had plenty of time...
I was in and out of hospital a few times from March when I was 13 weeks pregnant. I then went in on April 26th and stayed there until I was discharged on July 8th, almost three weeks after Elis was born. I had eventually been diagnosed as having placenta previa, which is where the placenta covers the cervix and can lead to bleeding (which it certainly did) and requires delivery via caesarian section to keep both mum and baby safe (which in our case, we didn't). I was getting progressively worse during my stay in hospital and had seven blood transfusions to try to combat the anaemia and got to the stage where I was confined to a horizontal position in bed (although the hospital did get me a special pressure relieving mattress!) I was even taken for my ultrasound scans still in bed. Fortunately, throughout the weeks of blood loss, the baby's heartbeat remained relatively unchanged and the professionals went from predicting that the pregnancy wouldn't last to believing that perhaps we might just make it.
Just to compound the issue though, the scans also showed that the baby had barely enough amniotic fluid to sustain its lung development (and certainly too little to get a good view of what sex it was, although they did think it was a boy).
When we finally made it to 24 weeks and the baby was technically 'viable', we had had several discussions with the paediatricians regarding the possible outcomes should something happen and the baby need to be delivered at that stage in the pregnancy. I was also given several doses of steroids to help the baby's lung development just in case of an early delivery.
To cut a long story short, after a few false alerts, I went into labour without anyone recognising it. Somehow, Elis had managed to squeeze under the placenta and it was only when I could feel him coming that the midwives sprung into action and he was delivered breech less than five minutes after I arrived on the labour ward at 01:59 on Monday 18th June. Glyn had been telephoned and told to come in as I was in a lot of pain but unfortunately he didn't make it to hospital in time for the birth. In fact, when he arrived at 02:15, the theatre was empty except for me and no one had told him what had happened so it came as a complete shock when I told him he'd missed the birth and that we had a son. We named him Elis Morgan Rhisiart there and then in the theatre. It was some time later that someone came to tell us that he weighed 820g (1lb 13oz) and that although he wasn't breathing when he was born, he was now on a ventilator with a tube into his lungs and the paediaticians were trying to stabilise him.
The picture became clearer later in the day when Glyn took me in a wheelchair to the Neonatal Intensive Care Unit to see him. As well as the tube to help him breath, he was having phototherapy to treat jaundice and the severe bruising to his lower body from the breech delivery and was receiving a raft of medications to combat other problems including stabilising his blood pressure, which was a problem during the first few days. Although tiny, he still looked bigger than I expected him to be when I first saw him. Having gone through weeks and weeks of uncertainty during the pregnancy, finally he was here and we could see him, but the uncertainty was to continue. At least without the placenta, I was able to start getting up again and begin to rebuild my own strength.
I was in and out of hospital a few times from March when I was 13 weeks pregnant. I then went in on April 26th and stayed there until I was discharged on July 8th, almost three weeks after Elis was born. I had eventually been diagnosed as having placenta previa, which is where the placenta covers the cervix and can lead to bleeding (which it certainly did) and requires delivery via caesarian section to keep both mum and baby safe (which in our case, we didn't). I was getting progressively worse during my stay in hospital and had seven blood transfusions to try to combat the anaemia and got to the stage where I was confined to a horizontal position in bed (although the hospital did get me a special pressure relieving mattress!) I was even taken for my ultrasound scans still in bed. Fortunately, throughout the weeks of blood loss, the baby's heartbeat remained relatively unchanged and the professionals went from predicting that the pregnancy wouldn't last to believing that perhaps we might just make it.
Just to compound the issue though, the scans also showed that the baby had barely enough amniotic fluid to sustain its lung development (and certainly too little to get a good view of what sex it was, although they did think it was a boy).
When we finally made it to 24 weeks and the baby was technically 'viable', we had had several discussions with the paediatricians regarding the possible outcomes should something happen and the baby need to be delivered at that stage in the pregnancy. I was also given several doses of steroids to help the baby's lung development just in case of an early delivery.
To cut a long story short, after a few false alerts, I went into labour without anyone recognising it. Somehow, Elis had managed to squeeze under the placenta and it was only when I could feel him coming that the midwives sprung into action and he was delivered breech less than five minutes after I arrived on the labour ward at 01:59 on Monday 18th June. Glyn had been telephoned and told to come in as I was in a lot of pain but unfortunately he didn't make it to hospital in time for the birth. In fact, when he arrived at 02:15, the theatre was empty except for me and no one had told him what had happened so it came as a complete shock when I told him he'd missed the birth and that we had a son. We named him Elis Morgan Rhisiart there and then in the theatre. It was some time later that someone came to tell us that he weighed 820g (1lb 13oz) and that although he wasn't breathing when he was born, he was now on a ventilator with a tube into his lungs and the paediaticians were trying to stabilise him.
The picture became clearer later in the day when Glyn took me in a wheelchair to the Neonatal Intensive Care Unit to see him. As well as the tube to help him breath, he was having phototherapy to treat jaundice and the severe bruising to his lower body from the breech delivery and was receiving a raft of medications to combat other problems including stabilising his blood pressure, which was a problem during the first few days. Although tiny, he still looked bigger than I expected him to be when I first saw him. Having gone through weeks and weeks of uncertainty during the pregnancy, finally he was here and we could see him, but the uncertainty was to continue. At least without the placenta, I was able to start getting up again and begin to rebuild my own strength.
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