Many thanks to Jeremy, Colin, Ed, Aggie, Martha & Alison for coming up to meet their niece/cousin today!
Sunday, July 24, 2005
Lots of visitors today!
Many thanks to Jeremy, Colin, Ed, Aggie, Martha & Alison for coming up to meet their niece/cousin today!
Katie came to visit last week
Our friend Katie came up from London to visit and help out with Chloe. They have a special bond and Chloe was thrilled when Katie joined her on a trip to Beamish with other children from her school. Thanks, sweetheart!, you're a star!
Thursday, July 21, 2005
Belated update
Hello Elizabeth fans,
Sorry for the lack of news. I have had a very busy week indeed so have not had a minute to look at the Blog.
Elizabeth and I went to the RVI on Monday and the news was good. Mr Jaffrey had a good squeeze of her bump and says that he suspects that all of the organs and bowel have now gone back into her torso and that the bump is now made up of fluid and 'mess'. If this is correct then her eventual operation will be much less radical in the sense that nothing will have to be forced back in. Yippee!
Another piece of great news is that Elizabeth put on over half a pound this week (81/2 oz to be precise). What a star baby!
Her big sister has also been a star this week. Chloe's wonderful school closed its doors forever on Tuesday. We had a fantastic time at the sports day/celebration fete on Sunday and on Tuesday Elizabeth and I attended the closure service which featured Chloe reading a prayer. She did it beautifully and I was really proud of her.
Some photos are attached (if I can manage it!) including one showing the new, shiny bump. It is now at least half the size it was orginally and much prettier I assure you...
J
xxx
Sorry for the lack of news. I have had a very busy week indeed so have not had a minute to look at the Blog.
Elizabeth and I went to the RVI on Monday and the news was good. Mr Jaffrey had a good squeeze of her bump and says that he suspects that all of the organs and bowel have now gone back into her torso and that the bump is now made up of fluid and 'mess'. If this is correct then her eventual operation will be much less radical in the sense that nothing will have to be forced back in. Yippee!
Another piece of great news is that Elizabeth put on over half a pound this week (81/2 oz to be precise). What a star baby!
Her big sister has also been a star this week. Chloe's wonderful school closed its doors forever on Tuesday. We had a fantastic time at the sports day/celebration fete on Sunday and on Tuesday Elizabeth and I attended the closure service which featured Chloe reading a prayer. She did it beautifully and I was really proud of her.
Some photos are attached (if I can manage it!) including one showing the new, shiny bump. It is now at least half the size it was orginally and much prettier I assure you...
J
xxx
Friday, July 15, 2005
Hooray! Great news
We have three main aims in life at the moment -
1) To get Elizabeth off oxygen
2) To get her fattened up!
3) To get her bump healed over.
I'm thrilled to say that number three can now be ticked off the list as the last of the dead tissue on her exomphalos (sorry to the squeamish among you) has now come off. She now has a nice pink bump.
J
x
1) To get Elizabeth off oxygen
2) To get her fattened up!
3) To get her bump healed over.
I'm thrilled to say that number three can now be ticked off the list as the last of the dead tissue on her exomphalos (sorry to the squeamish among you) has now come off. She now has a nice pink bump.
J
x
Sunday, July 10, 2005
Sunday, July 10th
It's the first Blog entry for a few days as things are mercifully quiet now we are out of hospital! I think that we will try to update every Monday as that's the day for Elizabeth's hospital outpatients clinic.
Elizabeth is continuing to enjoy life 'on the outside'. The weather here has been absolutely boiling and so she spent much of yesterday knocked out by the heat. Chloe had a great time in the paddling pool and on the water slide.
It was our annual street BBQ last night and we all stayed out until 10pm in the evening heat chatting to lovely neighbours. We now have many offers of babysitters!
Re Elizabeth bum'sp - she has now healed around 2/3rds of her exomphalos and is making amazing progress.
J
xxx
Elizabeth is continuing to enjoy life 'on the outside'. The weather here has been absolutely boiling and so she spent much of yesterday knocked out by the heat. Chloe had a great time in the paddling pool and on the water slide.
It was our annual street BBQ last night and we all stayed out until 10pm in the evening heat chatting to lovely neighbours. We now have many offers of babysitters!
Re Elizabeth bum'sp - she has now healed around 2/3rds of her exomphalos and is making amazing progress.
J
xxx
Tuesday, July 05, 2005
Monday, July 4th
Well, we 've been getting told off for not updating the Blog, so apologies to all you fans out there! Elizabeth and I are still home and she has not yet come to any harm - phew!
We have settled in really well and had a great weekend, which included seeing my brother's fabulous new house (it's filthy but it has enormous potential!). We had a lovely chilled out time in the garden (until a cat bit Ed, but that's another story) and also caught up with Vicky and Al.
Sunday was Hexham Carnival and Chloe took a starring role as part of the Splitz dance group. She was really brave as only two other of the little ones turned up and the three of them had to perform in front of a big croud. Chloe had a smile on her face the whole time - what a trouper!
Elizabeth had to go back to the RVI today for an outpatients appointment and as Chloe's school was closed for the day the three of us girls had our first outing together. It all went well and the only slight concern is Elizabeth's failure to put on weight.
I must sign off as daughter number 2 is demanding food!
Jxxx
We have settled in really well and had a great weekend, which included seeing my brother's fabulous new house (it's filthy but it has enormous potential!). We had a lovely chilled out time in the garden (until a cat bit Ed, but that's another story) and also caught up with Vicky and Al.
Sunday was Hexham Carnival and Chloe took a starring role as part of the Splitz dance group. She was really brave as only two other of the little ones turned up and the three of them had to perform in front of a big croud. Chloe had a smile on her face the whole time - what a trouper!
Elizabeth had to go back to the RVI today for an outpatients appointment and as Chloe's school was closed for the day the three of us girls had our first outing together. It all went well and the only slight concern is Elizabeth's failure to put on weight.
I must sign off as daughter number 2 is demanding food!
Jxxx
Monday, July 04, 2005
Presents
Lots of people have said that they would love to buy a present for Elizabeth, but are unsure/nervous about what to buy, so her cheeky/grasping mother has prepared this guide!
For every potential gift I can think of Anna is just a normal baby, with the notanle exception of clothes...
Clothes
We are hoping that Elizabeth will be 'fixed' by Christmas, so buying anything which is 12 months plus is advisable! However, those teeny weeny baby things can be irresistable, so here goes...
Basically, she is wearing age 0-3 months clothes so that her girth can be covered. She does however have a perfectly normal size head etc for hats and so on. Trousers are not do-able at present because of the bump and we have found that getting anything on that needs pulling up (like dungarees) is a bit of a challenge.
Dresses and bodysuits which do up down the front are great - we can't pull anything over her head easily because of her oxygen tube.
I hope that this helps.
J
xxx
For every potential gift I can think of Anna is just a normal baby, with the notanle exception of clothes...
Clothes
We are hoping that Elizabeth will be 'fixed' by Christmas, so buying anything which is 12 months plus is advisable! However, those teeny weeny baby things can be irresistable, so here goes...
Basically, she is wearing age 0-3 months clothes so that her girth can be covered. She does however have a perfectly normal size head etc for hats and so on. Trousers are not do-able at present because of the bump and we have found that getting anything on that needs pulling up (like dungarees) is a bit of a challenge.
Dresses and bodysuits which do up down the front are great - we can't pull anything over her head easily because of her oxygen tube.
I hope that this helps.
J
xxx
Thursday, June 30, 2005
HOME!!!!! Wednesday, June 29th
Elizabeth and I are home! We arrived back around 3pm after a morning of packing and getting the official go ahead. It's a great feeling.
The other big news is that Mr J (as A now calls him - but not to his face) talked to us in detail about the latest plan for the baby. He is very hopeful that she will have her major op (ie: she will not have an enormous bump any more) at six months or..gulp...even earlier . This is all very much dependent on Elizabeth continuing to do well - getting her off the oxygen, putting on weight etc, but it's fantastic that he is even considering this.
Elizabeth's big sister also had a big day today and visited her new school for the morning. She really enjoyed herself, but the only information she would share was what she had for lunch, the fact that she ate it from a tray and that if you forget the teacher's name it's perfectly acceptable to call her Miss.
I am so proud of Chloe. She has coped with all of this upheaval brilliantly and - at the moment! -adores her little sister.
J
xxx
The other big news is that Mr J (as A now calls him - but not to his face) talked to us in detail about the latest plan for the baby. He is very hopeful that she will have her major op (ie: she will not have an enormous bump any more) at six months or..gulp...even earlier . This is all very much dependent on Elizabeth continuing to do well - getting her off the oxygen, putting on weight etc, but it's fantastic that he is even considering this.
Elizabeth's big sister also had a big day today and visited her new school for the morning. She really enjoyed herself, but the only information she would share was what she had for lunch, the fact that she ate it from a tray and that if you forget the teacher's name it's perfectly acceptable to call her Miss.
I am so proud of Chloe. She has coped with all of this upheaval brilliantly and - at the moment! -adores her little sister.
J
xxx
Tuesday, June 28, 2005
Tuesday, June 28th
Elizabeth is doing brilliantly and is very bright eyed and bushy tailed this morning. She met Nev the Potter yesterday and had a couple of trips out to the park and the shops.
Must go and meet up with some of the people who are helping us once we get home!
J
xxx
Must go and meet up with some of the people who are helping us once we get home!
J
xxx
Sunday, June 26, 2005
Sunday, June 26th
Well, A got his birthday wish and has all of his girls home with him on his 39th.
We had a lovely time yesterday evening Glastonbury watching but the night itself was a challenge as Elizabeth found it hard to settle. Her big sister then decided to get up and stay up at 6am as she was so excited!
We have successfully changed Elizabeth's dressing and so far nothing untoward has happened to her, so hopefully we will be given the go ahead to be released 'back into the wild' on Wednesday.
Worn out, but very happy.
J
xx
We had a lovely time yesterday evening Glastonbury watching but the night itself was a challenge as Elizabeth found it hard to settle. Her big sister then decided to get up and stay up at 6am as she was so excited!
We have successfully changed Elizabeth's dressing and so far nothing untoward has happened to her, so hopefully we will be given the go ahead to be released 'back into the wild' on Wednesday.
Worn out, but very happy.
J
xx
Saturday. June 25th - breaking news
Hooray! We are home for the night! We have experienced all the joys and terrors of bringing a baby home from the hospital for the first time to the power of ten. However, we finally managed to work out how to get a baby with a large bump strapped into a car safely...
It is very weird being home with Elizabeth, but very, very wonderful.
J
x
It is very weird being home with Elizabeth, but very, very wonderful.
J
x
Friday, June 24, 2005
Friday, June 24th
Well, I did write an entry yesterday but there appears to have been a blip in the system and it has not appeared.
I am trying to broaden our horizons and be a little braver about going out and about, so yesterday Elizabeth enjoyed her first experience of the shops. She was wide awake which gave lots of lovely Newcastle ladies the opportunity to coo over her. There is nothing more guaranteed to get the attention of ladies of a certain age than a small baby with an oxygen supply. I bought her the cutest baby bonnet you have ever seen in a shop just like Unity House (one for our Hartlepudlian readership) to cover up her tubes a bit.
We are getting ever nearer to going home and it looks like this weekend we will get an overnight stay. The oxygen supply is being installed today and we now have 'mobile' oxygen too. A and my mum have done great work setting everything up. The community nurses will come in to see us on Monday, so that they know what supplies are needed. We are already experiencing some of the frustrations of dealing with a huge organistion like the NHS - some of the processes seem to be a little more complex than strictly necessary. However, I did my time at the BBC and have found that the NHS works the same way - you just have to keep on nagging away and never take it for granted that things have been passed on from one team to another!
If we are at home over the weekend we will keep you posted on how it's going. A and I are hoping to be able to watch Glastonbury on BBC3 on Saturday night, which will be bliss. I can't tell you how excited I am about spending a night in my own home - the first time since May 18th!
J
xxx
I am trying to broaden our horizons and be a little braver about going out and about, so yesterday Elizabeth enjoyed her first experience of the shops. She was wide awake which gave lots of lovely Newcastle ladies the opportunity to coo over her. There is nothing more guaranteed to get the attention of ladies of a certain age than a small baby with an oxygen supply. I bought her the cutest baby bonnet you have ever seen in a shop just like Unity House (one for our Hartlepudlian readership) to cover up her tubes a bit.
We are getting ever nearer to going home and it looks like this weekend we will get an overnight stay. The oxygen supply is being installed today and we now have 'mobile' oxygen too. A and my mum have done great work setting everything up. The community nurses will come in to see us on Monday, so that they know what supplies are needed. We are already experiencing some of the frustrations of dealing with a huge organistion like the NHS - some of the processes seem to be a little more complex than strictly necessary. However, I did my time at the BBC and have found that the NHS works the same way - you just have to keep on nagging away and never take it for granted that things have been passed on from one team to another!
If we are at home over the weekend we will keep you posted on how it's going. A and I are hoping to be able to watch Glastonbury on BBC3 on Saturday night, which will be bliss. I can't tell you how excited I am about spending a night in my own home - the first time since May 18th!
J
xxx
Thursday, June 23, 2005
Wednesday, June 23rd
Mr Jaffrey popped in to see Elizabeth again this morning. He is really thrilled with her progress and for the first time talked about doing her closure operation (when her giblets get put back where they should be) taking place after a few months rather than when she is one or two. That would be wonderful news for her as earlier closure would be better for her development all round!
We are building up to going home again but not counting our chickens!
J
xxx
We are building up to going home again but not counting our chickens!
J
xxx
Tuesday, June 21, 2005
Tuesday, June 21st
Elizabeth has put weight on and has reached the dizzy heights of 8ibs 5oz. This is great news as once she moves consistently in the right direction (and stays off the antibiotics) we should be allowed home.
She really enjoyed her morning bath. She is looking really well today and having a lovely sleep at the moment. Her dad and I are hoping to take her out to the park over the road from the hospital later on, if we can fit it in around her antibiotics (she gets linked up to a drip for two hours, so we can't move her more than three feet once they're turned on) and his lunch hour.
We are hoping to be home over the weekend for 24 hours. Fingers crossed that it will work out this time as it's her dad's birthday on Sunday. How lovely it would be for him to wake up on his birthday with 'Les Girls' all together at home for the first time!
J
xxx
She really enjoyed her morning bath. She is looking really well today and having a lovely sleep at the moment. Her dad and I are hoping to take her out to the park over the road from the hospital later on, if we can fit it in around her antibiotics (she gets linked up to a drip for two hours, so we can't move her more than three feet once they're turned on) and his lunch hour.
We are hoping to be home over the weekend for 24 hours. Fingers crossed that it will work out this time as it's her dad's birthday on Sunday. How lovely it would be for him to wake up on his birthday with 'Les Girls' all together at home for the first time!
J
xxx
Monday, June 20, 2005
Monday, June 20th
Well, Elizabeth has had an exciting day. At 7am she was having a chest x-ray (she had been coughing during the night), but all looks fine with that and her bloods are looking good (ie: her latest infection is being successfully blasted by the antibiotics). She then had a visit from Mr Jaffrey during her morning bath. He was thrilled with her progress and reckons that the amount of skin she has grown on her exomph is what he would have expected to see after five or six months! She is a star baby and the sooner she gets that skin grown the safer she will be from infection.
Mr Jaffrey followed up this great piece of news by brandishing a pair of scissors and trimming off what can best be described as "nasty bits" off her exomph revealing even more nice pink new skin underneath. He also had a good squeeze of her bump and could feel some of the contents moving back inside her.
His lovely colleague, Claire, then removed Elizabeth's central line (tube into her major veins used for antibiotics). This has been in for a few weeks and it's great news that it's come out as they can be a serious infection risk. It's also one less thing for her to have to lie on! Unfortunately, this procedure began just as her dad was arriving for his only visit today AND a magpie woke him up before dawn twice this morning by tapping on the window (pass me my gun, Jethroe!). Andy managed to grab a ten-minute cuddle before he left, but it shows how good it will be to get home.
By the way, having enjoyed some lovely visits last week (my personal thanks go in particular to Jules - it was REALLY lovely to see her!!!) I have no one coming this week, so please do text my mobile on xxxxxxxxxxxx if you'd like to arrange something. I need to hear about life outside!
J
xxxx
Mr Jaffrey followed up this great piece of news by brandishing a pair of scissors and trimming off what can best be described as "nasty bits" off her exomph revealing even more nice pink new skin underneath. He also had a good squeeze of her bump and could feel some of the contents moving back inside her.
His lovely colleague, Claire, then removed Elizabeth's central line (tube into her major veins used for antibiotics). This has been in for a few weeks and it's great news that it's come out as they can be a serious infection risk. It's also one less thing for her to have to lie on! Unfortunately, this procedure began just as her dad was arriving for his only visit today AND a magpie woke him up before dawn twice this morning by tapping on the window (pass me my gun, Jethroe!). Andy managed to grab a ten-minute cuddle before he left, but it shows how good it will be to get home.
By the way, having enjoyed some lovely visits last week (my personal thanks go in particular to Jules - it was REALLY lovely to see her!!!) I have no one coming this week, so please do text my mobile on xxxxxxxxxxxx if you'd like to arrange something. I need to hear about life outside!
J
xxxx
Sunday June 19th
Well, the best-laid plans and all that... we were meant to have Elizabeth home for a visit this weekend, or at least for a day-trip out, but she got another infection which meant another course of antibiotics - so this wasn't possible. So Chloe and I went in and stayed at Crawford House as usual this weekend. We still had a lovely time all together though. Chloe is very affectionate to her little sister.
We spoke to one of the consultants today about Elizabeth's progress. Overall, she is extremely encouraged; for a child with an exomphalos that size, Elizabeth is doing exceptionally well. What the team do want to do is get her weight up a bit before we can get her home; she also needs to shake the latest infection. The expectation has been set with us that this will be at least a couple more weeks. Although we're keen to get Elizabeth home, we know that it has to be at the right time. There's no point getting her home and having to turn straight around again - having lost our place at Crawford House in the meantime.
What struck me today when Elizaebeth was having her bath is just how quickly skin is growing on the exomph now. This is great because once skin covers it there's less risk of infection. It's likely that her central line (the tube that was put in when she was very poorly) will come out in the next couple of days. Again, this lessens the risk of infections.
Despite all that is going on, we are counting our blessings. Things could be so much worse, a fact brought home by the experiences of some of our housemates at Crawford House.
Axxx
We spoke to one of the consultants today about Elizabeth's progress. Overall, she is extremely encouraged; for a child with an exomphalos that size, Elizabeth is doing exceptionally well. What the team do want to do is get her weight up a bit before we can get her home; she also needs to shake the latest infection. The expectation has been set with us that this will be at least a couple more weeks. Although we're keen to get Elizabeth home, we know that it has to be at the right time. There's no point getting her home and having to turn straight around again - having lost our place at Crawford House in the meantime.
What struck me today when Elizaebeth was having her bath is just how quickly skin is growing on the exomph now. This is great because once skin covers it there's less risk of infection. It's likely that her central line (the tube that was put in when she was very poorly) will come out in the next couple of days. Again, this lessens the risk of infections.
Despite all that is going on, we are counting our blessings. Things could be so much worse, a fact brought home by the experiences of some of our housemates at Crawford House.
Axxx
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