Saturday, January 31, 2004
Eliza - Home for Good
Hi Everyone
After saying goodbye to all the nurses and collecting the array of stuffed toys she seems to have collected over the past 2 months we finally got Eliza home safe and sound about 10:30am this morning (Saturday). She has slept most of the day so far so there is not much to tell. Hopefully she will sleep most of the night as well!
regards
Darren
Wednesday, January 28, 2004
Update on Eliza - Close to Release
Hi Everyone
The rooming in at the hospital went reasonably well, although Michelle and I didn't get much sleep. You tend to lie there waiting for something to happen but thankfully she coped very well without our intervention. She only needed a little bit of help during her feed at 3.00am and slept through the rest of the time, so hopefully we will be able to handle her at home without too many difficulties. She is however a noisy little thing who snores, coughs and makes cute little sounds all night so we may need ear muffs just to get some sleep. So unless something goes wrong in the next few days we expect to take her home for good on Saturday and we can't wait.
We also got an update on what is actually wrong with her last night and now we seem to be back almost at square one in terms of a diagnosis anyway. Although she has characteristics of Nemaline Myopathy, apparently the presentation of the disease in Eliza is not typical and there are enough differences that they don't think she has an identified type of NM. Without getting technical they are saying that the muscle structure is different to what they would have expected, but has some of the Nemaline characteristics. As such they are now saying that she has an "Unrecognised Congenital Myopathy" with Nemaline characteristics. As such unless someone else has seen these particular characteristics before its unlikely they can test us to see what has caused it since they won't be able to identify the genes to check. Although knowing won't help Eliza, it would help us make a decision about trying for any further kids. I guess the positive from it is that if its a new mutation, then the final outcome is also unknown and we can hope that she just keeps getting better.
Much of what happens now will be helping Eliza to make the most of what movement she does have and to help her to experience as much as possible that a baby would. The hospital physio will be visiting on a regular basis and we are going to have an osteopath have a look at her as well. We also will try and get a speech therapist to work with her so that they can identify if she will ever swallow and be able to eat. We have to be a bit careful not to wear her out too much as she slept for almost 2 days straight after spending the long weekend with us.
I have attached a few up to date pics (she is such a cutie).
Talk Soon.
Darren
The rooming in at the hospital went reasonably well, although Michelle and I didn't get much sleep. You tend to lie there waiting for something to happen but thankfully she coped very well without our intervention. She only needed a little bit of help during her feed at 3.00am and slept through the rest of the time, so hopefully we will be able to handle her at home without too many difficulties. She is however a noisy little thing who snores, coughs and makes cute little sounds all night so we may need ear muffs just to get some sleep. So unless something goes wrong in the next few days we expect to take her home for good on Saturday and we can't wait.
We also got an update on what is actually wrong with her last night and now we seem to be back almost at square one in terms of a diagnosis anyway. Although she has characteristics of Nemaline Myopathy, apparently the presentation of the disease in Eliza is not typical and there are enough differences that they don't think she has an identified type of NM. Without getting technical they are saying that the muscle structure is different to what they would have expected, but has some of the Nemaline characteristics. As such they are now saying that she has an "Unrecognised Congenital Myopathy" with Nemaline characteristics. As such unless someone else has seen these particular characteristics before its unlikely they can test us to see what has caused it since they won't be able to identify the genes to check. Although knowing won't help Eliza, it would help us make a decision about trying for any further kids. I guess the positive from it is that if its a new mutation, then the final outcome is also unknown and we can hope that she just keeps getting better.
Much of what happens now will be helping Eliza to make the most of what movement she does have and to help her to experience as much as possible that a baby would. The hospital physio will be visiting on a regular basis and we are going to have an osteopath have a look at her as well. We also will try and get a speech therapist to work with her so that they can identify if she will ever swallow and be able to eat. We have to be a bit careful not to wear her out too much as she slept for almost 2 days straight after spending the long weekend with us.
I have attached a few up to date pics (she is such a cutie).
Talk Soon.
Darren
Tuesday, January 27, 2004
Its nice to finally feel like a family
Today was the third day that we had Eliza home with us and it was extremely difficult to take her back tonight even though we are both very tired. We picked her up early and didn't take her back until 9.00pm. Today was probably the best day we have had with her and she is really responding well to being home. She got to spend time with both sets of grandparents and participate in a normal day (well as normal as it can be with a 2 month old).
Eliza is sleeping a lot more deeply and slept for nearly 2 hours this afternoon slung over my shoulder (I managed to get a little well earned nap as well at the same time). She rarely ever sleeps so long during the day at the hospital and would have slept longer if we hadn't needed to wake her up to feed her. It was wonderful to have her curled up with me and I could sit (or stand) like that for hours.
So far looking after her has been a pleasure and I'm sure that during the next few months we are going to have rocky times and we both are terrified at the prospect of having her overnight, although hopefully we will get an idea of what she is like Tuesday night. At one stage I think I could have accepted that she might die from complications, but now she is such a big part of our lives it would be devastating if something happened to her, which adds to the worry of looking after her particularly at night.
I'm not sure if Eliza's difficulties have changed the way I view having a baby in my life (or if I'd have felt this way even if everything had gone to plan). I never expected to feel so strongly about her or want to spend as much time with her as I do (baby's and children have always been a bit of a mystery to me), but it has been a truly wonderful time and the past few days have reinforced the decision to get her out of hospital. I just hope that the care we can giver her is going to be enough and the next few weeks are going to be the hardest, but hopefully the best weeks we have ever had.
Darren
Eliza is sleeping a lot more deeply and slept for nearly 2 hours this afternoon slung over my shoulder (I managed to get a little well earned nap as well at the same time). She rarely ever sleeps so long during the day at the hospital and would have slept longer if we hadn't needed to wake her up to feed her. It was wonderful to have her curled up with me and I could sit (or stand) like that for hours.
So far looking after her has been a pleasure and I'm sure that during the next few months we are going to have rocky times and we both are terrified at the prospect of having her overnight, although hopefully we will get an idea of what she is like Tuesday night. At one stage I think I could have accepted that she might die from complications, but now she is such a big part of our lives it would be devastating if something happened to her, which adds to the worry of looking after her particularly at night.
I'm not sure if Eliza's difficulties have changed the way I view having a baby in my life (or if I'd have felt this way even if everything had gone to plan). I never expected to feel so strongly about her or want to spend as much time with her as I do (baby's and children have always been a bit of a mystery to me), but it has been a truly wonderful time and the past few days have reinforced the decision to get her out of hospital. I just hope that the care we can giver her is going to be enough and the next few weeks are going to be the hardest, but hopefully the best weeks we have ever had.
Darren
Sunday, January 25, 2004
Update on Eliza - On Parole
Hi Everyone
As I write this both Eliza and Michelle are having a bit of a snooze (I'd like to as well, but don't quite trust things that much as yet). Well this is day two of her hospital parole. We brought her home yesterday at around lunchtime and took her back at 8.30pm and managed not to kill her, which was a major achievement. She was a little unsettled at first, but soon got used to being at home (its nice to finally say that). It was quite a busy day as she had her first visitors, our friends Ian and Kathy called by with a lovely blanket that Kathy had made for her and later that day she had her first bath with mum in a full sized tub. Its amazing how small she looks in the bath and in her cot. The only problem we have been having is her bringing up a bit of milk, although we think that's because the hospital has increased her food a bit too quick and today she has been really good since they reduced the food intake a little. We have also realised that we need to buy a few things to make life a bit easier such as somewhere to put the suction machine and all the syringes we use to feed her and give her medicine. Not the sort of things they mention in any of the baby books!
Although things have gone well so far, the big test is going to be our first solo run at night (which will be Tuesday). The hospital has rooms available where you can stay with the baby, but still be close to the nurses if things go awry so hopefully we will be able to get some sleep and still look after Eliza's needs (fat chance I think the first few nights).
Well they are both waking up now so better go.
Best Wishes
Darren
As I write this both Eliza and Michelle are having a bit of a snooze (I'd like to as well, but don't quite trust things that much as yet). Well this is day two of her hospital parole. We brought her home yesterday at around lunchtime and took her back at 8.30pm and managed not to kill her, which was a major achievement. She was a little unsettled at first, but soon got used to being at home (its nice to finally say that). It was quite a busy day as she had her first visitors, our friends Ian and Kathy called by with a lovely blanket that Kathy had made for her and later that day she had her first bath with mum in a full sized tub. Its amazing how small she looks in the bath and in her cot. The only problem we have been having is her bringing up a bit of milk, although we think that's because the hospital has increased her food a bit too quick and today she has been really good since they reduced the food intake a little. We have also realised that we need to buy a few things to make life a bit easier such as somewhere to put the suction machine and all the syringes we use to feed her and give her medicine. Not the sort of things they mention in any of the baby books!
Although things have gone well so far, the big test is going to be our first solo run at night (which will be Tuesday). The hospital has rooms available where you can stay with the baby, but still be close to the nurses if things go awry so hopefully we will be able to get some sleep and still look after Eliza's needs (fat chance I think the first few nights).
Well they are both waking up now so better go.
Best Wishes
Darren
Saturday, January 17, 2004
A Good Day
Today was a good day. To allow Michelle a day off, I spent most of today alone with Eliza (as alone as you can be in a hospital ward). After a bit of a shaky start at her 10:00am feed where she was a bit restless and whinny (I think she was expecting mum), things got better. She had a nice bubble bath and a fresh change of clothes at 12:30pm and had her weight measured (she put on 78grams which was a stellar effort). At her 2.00pm feed we got to have a bit of a cuddle and a chat as well as singing the odd nursery rhyme (she doesn't mind that Dad forgets the words sometimes). At around 3.00pm I got to take Eliza outside for the first time (excluding ambulance rides between hospitals anyway). She was loaded up into a pram (roughly the size of a Rolls Royce) and off we went on the big adventure (no nurses, no monitors just the two of us). We started off just walking up and down the hospital corridor outside the unit, just to test how she would go and then ventured out into the fresh air. It was wonderful to see her looking around at all of the surroundings and the look on her face was something I hope I never forget. We kept mainly to the undercover paths between the various buildings at the hospital as her eyes still don't shut and she doesn't like the bright sunlight, but she got to feel the warmth of the sun and the coolness of the breeze for the first time, which for the past two months I wasn't certain would ever happen. We were only out for 45 mins or so (and she slept through the last 20) but it was a very happy time for the both of us.
Michelle came to the hospital at around 5.30pm and we fed and changed her, which was the first chance we have had for a while to be together, just the three of us. We then both had a cuddle with Eliza, throughout which she was very settled and content and it was a shame to have to put her back to bed (she is starting to get heavy!). I think she will sleep well tonight.
As I said today was a good day.
Darren
Michelle came to the hospital at around 5.30pm and we fed and changed her, which was the first chance we have had for a while to be together, just the three of us. We then both had a cuddle with Eliza, throughout which she was very settled and content and it was a shame to have to put her back to bed (she is starting to get heavy!). I think she will sleep well tonight.
As I said today was a good day.
Darren
Friday, January 16, 2004
Update on Eliza - She is coming home soon
Hi Everyone
As you can probably tell from the title, Eliza will soon be coming home. All going well we expect her to be out of hospital on the 31st of January. For us this is both wonderful news and terrifying at the same time, but I guess all new parents go through that feeling regardless of any other considerations.Over the next 2 weeks we will be making final preparations to get ourselves ready as well as Eliza. The hospital is encouraging us to get Eliza out and about for walks and we may even be able to do the odd home day visit before the 31st. We need to organise a baby capsule and a portable suction machine, plus a host of other odds and ends that she needs so its going to be a hectic couple of weeks. I'm hoping to take a week or two off work once she is home just to help get her (and us) settled in. She is going to be a lot of work, but hopefully a lot of fun as well and the whole experience may finally take on some normality.
We still haven't been to see the specialist at Westmead, but she is aware of Eliza and wants us to come and see her after we get Eliza home. She did make a comment that she was optimistic about Eliza's progress in that she is able to breathe without needing ventilation and that she is able to make anti-gravity movements, so that is positive news at least, although its still too early to get too hopeful, we try and hang on to anything that looks like good news.
Michelle has to go back in for day surgery on the 20th January to have a stent removed from her bile duct. This was put in place during her last operation to help keep the ducts clean. Although this procedure is done by endoscopy and is fairly quick, Michelle is not looking forward to being back in hospital for even a short time (and I can't say I blame her).
I hope that Eliza enjoys being home as much as we are going to enjoy having her here and although it probably means the end to any normal sleep pattern for a while, just to be able to avoid hospitals for a while will be the best thing for everyone :-)
regards
Darren
As you can probably tell from the title, Eliza will soon be coming home. All going well we expect her to be out of hospital on the 31st of January. For us this is both wonderful news and terrifying at the same time, but I guess all new parents go through that feeling regardless of any other considerations.Over the next 2 weeks we will be making final preparations to get ourselves ready as well as Eliza. The hospital is encouraging us to get Eliza out and about for walks and we may even be able to do the odd home day visit before the 31st. We need to organise a baby capsule and a portable suction machine, plus a host of other odds and ends that she needs so its going to be a hectic couple of weeks. I'm hoping to take a week or two off work once she is home just to help get her (and us) settled in. She is going to be a lot of work, but hopefully a lot of fun as well and the whole experience may finally take on some normality.
We still haven't been to see the specialist at Westmead, but she is aware of Eliza and wants us to come and see her after we get Eliza home. She did make a comment that she was optimistic about Eliza's progress in that she is able to breathe without needing ventilation and that she is able to make anti-gravity movements, so that is positive news at least, although its still too early to get too hopeful, we try and hang on to anything that looks like good news.
Michelle has to go back in for day surgery on the 20th January to have a stent removed from her bile duct. This was put in place during her last operation to help keep the ducts clean. Although this procedure is done by endoscopy and is fairly quick, Michelle is not looking forward to being back in hospital for even a short time (and I can't say I blame her).
I hope that Eliza enjoys being home as much as we are going to enjoy having her here and although it probably means the end to any normal sleep pattern for a while, just to be able to avoid hospitals for a while will be the best thing for everyone :-)
regards
Darren
Sunday, January 11, 2004
Update on Eliza
Hi Everyone
Just a quick note to say that Eliza has now moved into the special care nursery. She seems to have taken well to her new environment. She is spending a lot more time awake during the day so she is wearing us out a lot more. The only major problem at the moment is that the medicine she has been on to help with the secretions seems to be loosing its effectiveness, so hopefully we can find something else soon. Not too much other news to tell, although the specialist at the Children's Hospital returns from holidays this week so we may finally get a complete diagnosis and I am hoping to speak with her soon so we can at least map out how to care for Eliza in the best possible manner.
Talk to you soon.
Darren
Just a quick note to say that Eliza has now moved into the special care nursery. She seems to have taken well to her new environment. She is spending a lot more time awake during the day so she is wearing us out a lot more. The only major problem at the moment is that the medicine she has been on to help with the secretions seems to be loosing its effectiveness, so hopefully we can find something else soon. Not too much other news to tell, although the specialist at the Children's Hospital returns from holidays this week so we may finally get a complete diagnosis and I am hoping to speak with her soon so we can at least map out how to care for Eliza in the best possible manner.
Talk to you soon.
Darren
Thursday, January 01, 2004
Happy New Year
Happy New Year to you all from Eliza, Michelle and Darren.
As I write this email the New Year is fast approaching and 2004 is shaping up as a year of unknowns for us. Michelle and I have made the decision to take Eliza out of the High Dependency Ward and move her to the special care nursery. This means that she will not be cared for as proactively as she is now and increases the risk of something going wrong and being missed. We feel its the best way to prepare her to come home. It will also give us the chance to learn what we need to be able to care for her properly and to have her more fully in our lives. Even in the environment she is currently in, there is the chance she will get sick and worsen, but there is little hope of her learning to cope on her own and little chance of her being able to experience being a baby and part of a family. Assuming she copes with this change of environment we are hoping to be able to take her home sooner rather than later (although we are not placing any timeframe on this). Michelle also needs time to recover fully from her operations and she is still quite tired and sore at the moment.
Although the doctors keep telling us to expect the worst and that she isn't really making any improvement, We are not convinced. Maybe its just us being bloody minded, but she is putting on weight (she's a little over 3 Kg's - 6lb 9 oz) her movement and activity levels have improved and they have given her some medicine that dries up the secretions and this appears to have helped her avoid some of the suctioning she was requiring. We know she is going to be affected by this for the rest of her life and that there is always the possibility that things may get worse, but until they do we are not ready to give up on her and we will try and treat her as normally as possible. The next 6 - 9 months are probably going to be the most critical for her and if she survives we may have a better idea of her longer term outlook. We also hope to get more information once we get the final diagnosis from the muscle biopsy (although this may tell us what, its not going to tell us why or what her likely prognosis is).
I don't know for sure if we are doing the right thing and it may turn out to be the wrong decision in hindsight but we still think her life will be better away from the hospital. If you want to know more about the types of things we are likely to face I would recommend looking at the following website: http://www.davidmcd.btinternet.co.uk/. It provides a non-medical and personal perspective and shows how variable the thing is (and why despite the doctors we still have hope for Eliza).
regards
Darren
As I write this email the New Year is fast approaching and 2004 is shaping up as a year of unknowns for us. Michelle and I have made the decision to take Eliza out of the High Dependency Ward and move her to the special care nursery. This means that she will not be cared for as proactively as she is now and increases the risk of something going wrong and being missed. We feel its the best way to prepare her to come home. It will also give us the chance to learn what we need to be able to care for her properly and to have her more fully in our lives. Even in the environment she is currently in, there is the chance she will get sick and worsen, but there is little hope of her learning to cope on her own and little chance of her being able to experience being a baby and part of a family. Assuming she copes with this change of environment we are hoping to be able to take her home sooner rather than later (although we are not placing any timeframe on this). Michelle also needs time to recover fully from her operations and she is still quite tired and sore at the moment.
Although the doctors keep telling us to expect the worst and that she isn't really making any improvement, We are not convinced. Maybe its just us being bloody minded, but she is putting on weight (she's a little over 3 Kg's - 6lb 9 oz) her movement and activity levels have improved and they have given her some medicine that dries up the secretions and this appears to have helped her avoid some of the suctioning she was requiring. We know she is going to be affected by this for the rest of her life and that there is always the possibility that things may get worse, but until they do we are not ready to give up on her and we will try and treat her as normally as possible. The next 6 - 9 months are probably going to be the most critical for her and if she survives we may have a better idea of her longer term outlook. We also hope to get more information once we get the final diagnosis from the muscle biopsy (although this may tell us what, its not going to tell us why or what her likely prognosis is).
I don't know for sure if we are doing the right thing and it may turn out to be the wrong decision in hindsight but we still think her life will be better away from the hospital. If you want to know more about the types of things we are likely to face I would recommend looking at the following website: http://www.davidmcd.btinternet.co.uk/. It provides a non-medical and personal perspective and shows how variable the thing is (and why despite the doctors we still have hope for Eliza).
regards
Darren
