Chloe is six

Well, Chloe is six. It's unbelievable!

Unfortunately we have been hit by a nasty tummy bug and Elizabeth and I have been really unwell, so this morning we had to make the decision to scale down Chloe's birthday party from 17 children to a more modest 2 (cousins who had already been exposed to the dreaded lurgy). Chloe was very sweet and grown up about it.

We have rescheduled her big party for the 15th. She received lots of lovely presents today and enjoyed her "teeny weeny" party with Hugo and Georgie.

J
x

PS: Later addition - Chloe spent the evening of her birthday in A&E as she developed a horrible weird-looking rash and felt awful. We were told to take her in 'just in case' and it turned out to be an allergic reaction to a throat bug she had been harbouring!

Happy New Year!

Well, we scooted down to Hartlepool yesterday to see Marg and Trev. We were sorry not to stay for the party (I do love a good party!), but it was a very sensible decision as Elizabeth did not settle in the evening. We did however try her purely on breast milk last night and she slept wonderfully well and is very happy today. So, it looks like formula milk is the culprit as opposed to solids. Hopefully, we will all get a bit more rest now.

Happy New Year to all of you. We drank a bottle of champagne, watched a great film and cuddled our youngest daughter, so it was a good evening.

As you can see from the shot of Elizabeth, she found her first New Year's Eve very thrilling. That's A's hairy chest in the shot not mine, by the way!

J
xxx

Party pooper!

Well, we have finally given in and accepted that we can't go to a party for New Year's Eve! We had planned to stay at my mum and dad's and see their many friends who have been such a support to us, but Elizabeth has other ideas. She is being a challenge at night to say the least (she seems to have digestive problems and Gaviscon - our last hope - did no good last night). It's clear that for now our social life (together) needs to be confined to the hours of daylight and we should stop being over-ambitious.

Luckily we have all been invited to daytime parties over the next couple of days, which will be lovely. We also have Chloe's fancy dress birthday party on the 3rd to organise. Lack of sleep forced us to give in yesterday and hire a children's magician out of sheer desperation!

The great news on Elizabeth is that she has rolled over for the first time and the attached photo is of her looking a little bit shocked at her own abilities. What a little (daytime) star. Also, the doctor has referred Elizabeth to the lovely Dr Turmer (consultant pediatrician) to keep an eye on her development. Elizabeth seems to be doing brilliantly and is as bright as a button, but it will be wonderful to have someone to keep an eye on her and make sure that the impact of her bad start is minimised.

This evening I think we will enjoy a glass of champagne and think how lucky we are to have two gorgeous little girls with us.

J
xxx

PS: BREAKING NEWS - Nev the Potter and the lovely Mel are expecting a baby in June. Bless!!
Also, we think that Les's partner, Michelle, gave birth to a baby boy yesterday, but the text message was garbled so we're waiting for confirmation!

There's no business like snow business

As you can see, Elizabeth really enjoyed her first time in the snow!

Merry Christmas!

Merry Christmas!

We enjoyed a lovely Christmas Day in Hartlepool. Last year was somewhat overshadowed by our wait for test results showing whether Number 2 (as Elizabeth was then known) was suffering from a chromosomal disorder called Edwards Syndrome.

It was wonderful to be able to finally introduce Elizabeth to her Uncle Sijbolt and cousins Hugo and Georgie who live in Holland. My sister, Suzanne, last saw Elizabeth when she was four days old and in Intensive Care, so I think she especially enjoyed seeing her niece looking so happy and healthy. Elizabeth was unimpressed by the festive fare on offer and stuck to fromage frais, porridge and breast milk.

Today was spent with Ed, Sheena, Ruby and Ted also and it was great to have the whole family together.
********************************************************************************

Our thoughts tonight are with all of those who lost loved ones in the tsunami.
J
xxxx

Weight issues

Well, Elizabeth was in big trouble this morning. I took her to the baby clinic to discover that she had gained...Absolutely nothing. That's a very low return on my investment of night feeds as far as I can see. We have now put her on the Fatkins Diet, so it's extra cream with everything and she enjoyed Heinz Chocolate Pudding for her tea. As I was strictly an 'organic, no added sugar, Guardian reader type of mother' with Chloe it will be interesting to see how this nightmare regime impacts on Elizabeth's future tastes.

She sat up for the first time yesterday for about five minutes without keeling over. Her tummy control has come on really beautifully this week.

PS: Some of you (sorry anyone abroad) are yet to receive a Christmas card. They are on their way, but you can see above what it will look like when it arrives!

In the swim

We enjoyed a family trip to Slaley Hall this afternoon and Elizabeth had her first 'swim'. Slaley Hall is a local (very plush) hotel with a lovely pool and we were given some vouchers for entry by our lovely family friends Marg and Trev who often put comments on the Blog.

Elizabeth seemed to enjoy herself wearing her baby wet suit and Chloe had a grand time too. We rushed back to see ourselves on the news, but it looks like we won't be on until tomorrow.

Jx

Media domination!

There was a lovely article and photo about Elizabeth in our local paper today which resulted in my having rather a strange Friday to say the least...

A news agency picked up the story and I returned from the Baby Clinic and a coffee at my friend's house to be greeted by a journalist. We had a chat and he said that lots of magazines had been in touch. As they would donate a few hundred pounds for the story to the Sick Children's Trust I heard him out, but unfortunately they were all of the ilk of 'Chat' and 'Closer', so I said no to him. He called back later to say that the Daily Mail and Express wanted the story, but I again said no as I'm not a big fan of tabloids - you never know what kind of spin they're going to put on a story. They cheekily sent a photographer (just as Elizabeth was about to have an injection), but I sent him packing (politely, honest!). We'd much rather raise the money through other means.

We are, however, going to be on the local news tomorrow as a heart-warming Christmassy story for the end of the bulletin. All we want is the chance to get some positive publicity for the SCT and to say thank you to all those who have helped us, so hopefully we won't be bothered by the nasty nationals again!

J
x

PS: We'll scan the photo into the Blog ASAP. It's sweet!
PPS: Elizabeth only put on 2oz this week. Had lovely chat with the lady at the Baby Clinic, so hopefully we'll do better next week.

The joy of fromage frais

Elizabeth continues to do really well. Our lovely physio, Sylvia, came to see her yesterday and reckons that she is only a month behind average as far as sitting up and so on is concerned - I think that's very encouraging considering the circumstances. Elizabeth tends to curve over very easily when she's sitting, so she needs her back muscles building up. We'll pop her onto her front as much as possible over the next few weeks on her gorgeous flat tummy.

Another piece of good news is that I have discovered that Elizabeth loves fromage frais and that has a knock-on effect on her sleeping, so I get a nice four-hour block every night. Bliss!

By the way, Elizabeth will be a media star on Friday as her story is going to be featured in our local paper. I wrote the piece to get some publicity for the Sick Children's Trust. Keep an eye out for the Hexham Courant if you can - we will scan the article into the Blog for those whose lives are lived without the 'Rant.

J
x

Santa and scars!

As it's nearly Christmas, here are two festive shots - one of Elizabeth's tummy and one of Chloe with Father Christmas. Both make us feel very happy!

We had a lovely family weekend visiting Hexham Christmas Market and going to see Father Christmas at a local National Trust property followed by a nice walk in the unseasonably warm weather. Chloe also enjoyed a bonus second trip to see the Happy Gang with her friend Alex as she was brought in as a last-minute reserve.

A and I both felt a bit down at times this weekend. I think we are still reeling from the shock and relief of Elizabeth's surgery going so well. I guess it will take a while for us to get over 2005 and we are still very tired out. It seems very ungrateful to have even a shred of unhappiness left when I think how things could have turned out.

We need to go sky diving to finally release that tension - I am booking now!

J
xxx

Elizabeth's progress

Well, this morning Elizabeth seems to be almost back to her old self (minus the bump, of course!).

She has been very subdued over the past few days and in need of constant cuddles. This morning she is full of fun and smiles and that's without any pain relief of any kind so far today.

Elizabeth spent a couple of days exploring her tummy, trying to find her bump. but seems to have given up hope of finding it now!

J
xx

Home again, home again, jiggety jig...

Well, it's just 2 days after the op and we're all home again. We're all a bit incredulous but absolutely thrilled as you can imagine !! The marvellous Gillian, my mother-in-law, has looked after me and Ella wonderfully over the last few days, and is headed off home today. Huge thanks to Gill.

I'm off work for the next few days so Elizabeth can take it easy at home without having to go out. But right now J can hopefully have a well-deserved sleep, and I'm going to get the champagne (well, Cava) on ice for later !!

Ax

You've come a long way, baby

Day eight in PICU after birth

Day before op at 5.5 months














.Day after op


Anna has a transparent dressing under which you can see a bit of blood that's been there since she came out of Theatre yesterday. The dressing should be coming off tonight! Anyway, just LOOK at that flat stomach !!

Friday

Thanks for everyone's lovely comments over the past couple of days - I am logged in at the hospital and this was my first chance to read them.

Elizabeth did really well last night and even woke up at 3am for a play! She is now happily in her cot without oxygen or any morphine. Amazing! She still hasn't had a feed, but she doesn't seem hungry and is, understandably, sleeping far more than usual.

Mr Jaffray popped in to see her last night in his scrubs (it was past 8pm and he had been in theatre from 9am as far as I know) and seemed very pleased with her progress. A is waiting for Mr Jaffray back on the ward - he hasn't seen Elizabeth yet today as he is carrying out an emergency operation.

She looks so wonderful minus her bump - I can't quite believe how well she is and I couldn't sleep last night I felt so excited and happy.

J
xxx

Post-op and relaxed

Elizabeth's Op - update

Hi all,

Greetings from the library at the hospital. Elizabeth's op went really well. She got back from Theatre to her room at about 12pm. It's amazing - she has a flat stomach !! There's a transparent dressing over the wound so you can see exactly what it's like. She's morphined up and other than the odd jitter - a side-effect of morphine - is very comfortable. She just has a whiff of oxygen from a mask put at the side of her head. Other than that she's got a saline drip to keep her going and a sensor to monitor her oxygen saturation... and that's it. She's got great colour in her cheeks, and looks really well.

Mr Jaffray was very happy with how the op went; he did get muscle closure and he did create Elizabeth a belly button of sorts. He mentioned that there might be a hernia of some sort just below Anna's ribcage, but that he wasn't worried about it. We haven't spoken to him about what, if anything, he would do about it. I guess it'll probably wait until Elizabeth's older.

Anyway, I'm off to get chocolate and then back to the ward!

Ax

All set for the big day...

This is Elizabeth in the bath this morning --->

She's been admitted to the hospital now, and seems very at home! She's been giving lovely smiles to the nurses and doctors who remember her very well from the summer.

We saw Mr Jaffray the surgeon late this afternoon, who gave us some detail on what to expect tomorrow. Elizabeth's second on the schedule for her op, so should be in at around 9:45. He and the anaesthetist expect the op to be over by about 11 - 11:30.

Having had a good prod of Elizabeth's bump, Mr Jaffray is very confident that the op should be straightforward and succesful. He said that he expects everything to go back inside pretty nicely, and that if there IS anything untoward (eg if anything's sticking to the wall of the bump) he'll be able to deal with it there and then. Mr Jaffray is hopeful of getting complete closure - ie muscle closure - although if necessary he will insert a small piece of goretex to cover any remaining hernia. Mr J may also create a belly button for Anna during the op!

Elizabeth will be under a general anaesthetic for the op, then on mild morphine sedation for the rest of tomorrow. Mr J hopes that she will be sedative-free after that. She'll come home when she's fully able to digest food properly (3-7 days); until then she'll just be on a saline drip so that'll be one hungry baby!!

We'll update the blog as soon as we can tomorrow. In the meantime, thanks for all the messages of support - much appreciated as always!

Ax

Off to the hospital

We'll be off to the hospital tomorrow and Elizabeth's operation is still scheduled to take place some time on Thursday. I will be staying with Elizabeth, but unfortunately A can't stay on the ward overnight. My mum will be looking after A and Chloe.

Thank you for the many messages and cards we've received. Hopefully, we will have web access from the hospital again and so we'll be able to update the Blog daily.

I'll leave you with a very cute shot of Elizabeth taken this afternoon. As you can see SHE hasn't got a care in the world!

J
xxx

Operation rescheduled!!

We had some bad news today - Elizabeth's operation has been rescheduled for December 1st. We were mentally prepared for next week, but we will just have to 'stand down' and try to enjoy the next couple of weeks as much as possible.

Speaking of enjoying ourselves...the attached photo is of us on a hay ride (the occasion being Elinor's sixth birthday party). It was a fabulous experience rolling through the beautiful Northumberland scenery. Mr Dodd's horses had been ploughing the fields that morning. They work the only farm in Britain still relying purely on horses.

J
x

Belly Dancing

Elizabeth has a new play mat (courtesy of a very generous gift from my mum's friend Margaret Claydon) and here she is on her tummy having a gorgeous time.

Janie
x

A Historic Day

For the first time in her life Elizabeth has gone to bed without any kind of tube attached to her person!

Love is like oxygen (Part 2)

More news - for a week or so now, Anna has not had oxygen during the day at all - just from 6:30 pm to 7am. Well, on Friday we took delivery of a machine to measure Anna's blood oxygen saturation levels (SATS), so we can take her off the oxygen supply at night too. We attach a sensor to her toe with some sticky tape and the alarm goes off if her SATS fall below 85%; the target is high 90%s.

So far so good - the alarm has gone off several times each night but only because Anna has been wriggling and the sensor has come away from her foot! Her SATs have remained at 96% - 100%, which shows that she doesn't seem to need the oxygen supply at all now. Hurray! The immediate effect is that her face is having a chance to recover from months of having tape attached to it.

Here's a lovely pic of les girls!

Happy!

This is how we see Anna most of the time now* - without tubes, and loving it!

*Naturally, she has her moments... generally a string of 'em in the hour or so leading up to bedtime !!

Blubber

Well, Anna astonished us all today at the weigh in - she had put on only 3oz over the past fortnight and then today another 8oz appeared on the scales. She has escaped the dreaded NG tube - hoorah!

Big news!

We have had the date through for Anna's operation. She has to go in to the RVI on November 21st to have her op on November 22nd.

We both feel great trepidation (she's so well!), but it will be great to move forward and get things back to normal by Christmas. The question is, "Where will Anna rest her hands once her bump has been taken away?".

Janie
x

Keep on keeping on

We had an emotional week as one of our friends from GEEPS (parents' support group on the Net) lost her newborn son this week. We appreciate more than ever how lucky we have been.

*************************************************************************************

Anna is continuing to do well. She is off the oxygen almost all day now - we just pop her back on for an hour or so around midday. On Friday, Juliet (our lovely community nurse) will come and check she's okay late afternoon and, if so, we will get the go ahead to leave the O2 off all day every day. We'll then tackle the nights, which involves having a probe attached (painlessly!) to Anna which sets off an alarm if her O2 saturation levels fall below a certain point.

Her feeds are not going quite so well and she put on a meager 2ozs in weight this week. She is still breastfeeding every two hours and very unimpressed by solids and bottle feeds. The health visitors say that sometimes babies who have been on O2 have very sensitive mouths, but hopefully she'll take to solids soon as the feeding is a bit tiring.

We are also trying to find something to take the sting out of her sore cheeks. They get irritated by her O2 tubes. We have tried Sudocrem, E45, Elizabeth Arden 8 Hour Cream, coconut cream and Oil of Olay, but nothing seems to work. We have just received a tube of Aloe Vera gel from Andy's mum and dad, so we will give that a go over the next few days, but any suggestions are gratefully received!

Janie
x

Love is like oxygen

Apologies for the big gap between Blog entries!

The good news is that Elizabeth has put on weight really nicely over the last couple of weeks, so it looks like we have seen the last of her NG tube (at least until after her op when she may need one for a few days). She is still being driven mad by the oxygen cannula, but at least that can be taken out twice a day while she is weaned off the O2. She is now off for two blocks of three hours every day. It is so lovely to see her without tubes for such a long period of time and she is so easy to carry about!

She rolled on to her side without any help yesterday for the first time. Rolling isn't easy when you have a big lump altering your centre of gravity, but she loves it. I also put her on her tummy every day, but that isn't quite so successful. However, we must persevere.

No news on the date for her op yet...

Chloe is still enjoying her new school. She is learning Spanish and all about houses. As a result she shouts such things as "Look, Senorina, a terraced bungalow!" much to my surprise. She has also lost one of her bottom teeth and is very thrilled to be so grown up. She seems to be making friends very well and enjoyed her first Hexham East party last week.

J
x

Big developments!

Hi y'all,

What a wonderful day we had at the RVI! To cut a very long story short:-

We are now on Mr Jaffrey's List - in other words Elizabeth is in the queue for her operation and it should take place in November or December. No date yet and no idea when the date will come through, but it's a major step forward. Mr J doesn't expect Elizabeth to have to go to intensive care after her op which is brilliant. Also, if she goes to Ward 4 (standard paediatrics) I will be able to sleep in her room for the 5-7 days they expect her to be in for.

We then moved on to the dietician who said that we can try Elizabeth without her naso-gastric tube this week and see how she does without it weight-wise. I whipped the tube out two minutes after we got in the house! If she does okay then we can try her on some baby rice next week. This is two months earlier than the recommended time, but Elizabeth loves flying in the face of convention. Hopefully, this all means some sleep for her haggard and rapidly ageing parents.

Lastly, we saw Dr McKeen the respiratory consultant (not the chest man as I normally call him). He is happy for us to try to wean Elizabeth off her oxygen over the next few weeks. She is also having lots of extra vaccines to prevent her catching any nasty bugs this winter. They are reassuringly expensive! The poor wee scrap won't thank us for all the extra injections, but she must be kept well before and after her op.

AS you can imagine we are really thrilled that things are moving forward. Mr J said that Elizabeth has done the best he could possibly imagine without any of the setbacks he foresaw. Fingers crossed that she continues to amaze us all!

A very happy J&A
xxxxx
xxxxx

Update and cute photos

Elizabeth is motoring away and has reached a a positively chubby 10IBs 7oz! We have been busy, busy, busy with ChlElizabethoe on her school holidays. She enjoyed a fabulous week in Glamis with A's parents last week and was spoilt rotten. She has also been transformed into a ballet buff - other children may demand Power Rangers but our eldest now wants the video of 'La Fille Mal Gardee' on!

I hope that you enjoy the photos above of a lovely smiley Elizabeth and a shot of her without any tubes. She pulled her NG tube out again last week and I took the opportunity to change her oxygen cannula and grab this photo. I hardly recognised her!

We are fed up with the oxygen and the NG tube.  is suffering from really dreadful colic as the result of the tube feeds at night, but unfortunately we can't stop them yet. Poor wee scrap.

J
xxx

PS: It was lovely to hear from some new 'commentors' such as the Silver Surfer Scarratts, but sorry to hear that the Greenwoods managed to emigrate to Oz without us getting a nice cheap phone call in to Brighton first! Good luck, guys.

Hospital visit

Hi,

Elizabeth had an outpatients appointment at the RVI yesterday. All good news. Dr McKeen (the 'chest' man) was absolutely amazed by Elizabeth's progress in terms of growth and lung development (so amazed he got a colleague in to have a gander as well!). He is happy that she would now be able to cope with an operation and has given Mr Jaffrey his go-ahead. We had hoped to get the all clear to start weaning AElizabeth off the oxygen, but the decision was made to allow Elizabeth to continue to put weight on for another month (our next appointment is Sept 12th).

Mr Jaffrey was thrilled with how the exomph is coming along. He will see Elizabeth on Sept 12th as well, and will then take a view of a date for the operation. Although he reckons Elizabeth will probably be ready for the op in September he doesn't want to rush into it; he said that he'd like to see Elizabeth off the oxygen for a while so that she doesn't end up on a ventilator for a week after the op. On that basis we reckon November looks likely...

So, overall, great news and Elizabeth continues to amaze us all (healthcare professionals included) with her determination to beat the odds!

A&J x

Visitors!

We had a lovely visit from old friends Ally, Howie and their two children Charlotte and Sam. There's only a few months between Charlotte and Chloe and they get on brilliantly (as do Sam and Chloe),

Many thanks to Howie & Ally for helping out so much and looking after us!

It was also lovely to see A's sister Liz and daughter Phoebe for a flying visit on Saturday.

A&J x

Smily baby

A very welcome development is that Elizabeth's learnt to really smile - responding very well to funny faces (just as well given her mum & dad...!)

No news is good news!

We've had a good but very busy week (I curse these summer holidays!), so once again it's been difficult to update the Blog. Elizabeth put on another 6oz which was amazing and she's due another weigh in this Wednesday. She is now going up in line with the 2nd centile. She is looking very well and her exomph seems to be shrinking before our very eyes.

We had Charon and her lovely baby, Grace, to stay last week. Charon was a great help. Gone are the days when we would salsa until dawn - it was lights out at 9.30 for us!

We still have the community nurses in every morning to help me to dress the bump, but are able to go out and about other than that. A was away this weekend at Howie's 40th celeberations in London, so my mum came to stay and we went to the Life Centre in Newcastle. Because of Elizabeth's condition we can claim free entry to a lot of the major attractions in the North East, so Chloe will enjoy some great days out this summer. Yesterday's highlight was a rocket making workshop!

Must sign off - I had a very busy night with Elizabeth last night and I am losing the will to live...

J
xxx

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!

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

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

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

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

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

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

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

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

Elizabeth really enjoyed her first bath at home! 

Me and my girls enjoying the sunshine at home on my birthday - I couldn't ask for more. Axxx PS special hello to my God-daughter Adele, and huge congratulations on getting accepted as an associate at the RBS this week !!!
 

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

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

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

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

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

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

It's been a busy week for visitors. On Monday, Andy's sister Liz met Elizabeth for the first time, on a visit along with Grandma... 

...then there was our old friend Julia from Germany... 

...and then there was Steve, a friend of Andy's from work. Hmmm, wonder why Elizabeth's gone cross-eyed? 

Elizabeth went outside for the first time today. Note large bottle of oxygen in the bottom of the pram. Chloe helped push the pram round and round the statue of Queen Vic... 

Weds 15th June

Hi All,

Sorry for the lack of updates - there hasn't been much to report in the last couple of days, other than that Elizabeth is still doing well. Her diet now consists principally of breast milk, with a few feeds a day of a high-calorie powdered milk. As she uses a lot of energy breathing and growing new skin on the exomph, she needs more calories than usual. As she usually falls asleep part way through the bottle (because she loves the cuddle so much!) we end up getting the rest down the naso-gastric tube. The upside is that she's very rarely sick!

The big news today is that they're letting us out for a trip home at the weekend. This is a great sign of progress. We will probably have Elizabeth home from Saturday noon to Sunday noon. It will be lovely to be a whole family in our own house, even if for just a day. Mind you, that'll probably be enough for a first visit home - there being no doctors or nurses just down the corridor...

That's all for now. I'm worn out, having been frantically cleaning up the pram that's been in the shed for a couple of years - and trying to work out how the damned thing folds up to get into the car!

Axxx

Monday, June 13th

Elizabeth is having a lovely day. As her antibiotics are finished and her short 'line' has been removed we managed a dance around her room this afternoon.

I had a trip out to register the birth.

Not much to add (no news is good news!).

J
xxx

Sunday 12th June

Another lovely weekend in Newcastle for us all; Elizabeth's doing really well and just looks, well, peachy! She's also taking great interest in the world around her. Her mum bought her a set of shapes covered with high-contrast patterns and she just goggles at them. Her mum's hours put in at the bedside - and they are very many - also mean that whenever Elizabeth hears her voice she's immediately looking around to find out where her mum is!

The exomph is growing skin at a rapid rate, which is great. I've deliberately not posted pictures up here showing the exomph uncovered, as it really ain't pretty; we have taken quite a few and in due course will be doing a more 'medical' diary to help other parents with exomph children understand what's coming. Such information certainly helped us prepare.

But in the meantime, we like to focus on the fact that, sure, she's got a large haggis-looking thing on her tum, but she's a beautiful, alert, growing, fully-functioning baby girl !

Elizabeth enjoying her bath - 12th June. 

Chloe's first cuddle with Elizabeth on the 11th June. Super Sisters !! 

Friday 10th June

Hi all,

Elizabeth's had a good day today - bright as a button this morning although resolutely asleep by the time her father got there, waking only for her bath and dressing just as I and Elizabeth's gran had to go. Her bump is definitely growing skin, and she looked positively peachy today.

She does have MRSA on her bump, but this is not the disaster that the media might lead us to believe. According to the specialist, Mr Jaffrey, they've never lost a baby to MRSA, and, even if she wasn't on antibiotics (which she is - and the right sort to combat MRSA at that), he is confident it would clear up by itself. That's exactly what happened with a baby down the corridor recently. MRSA is a big threat for elderly, very poorly people, which is why it's a big problem for hospitals. However, to put it in context, around 1 in 3 of us are carrying the bug right now.

The meeting yesterday went well; we met the Sister in charge of Anna's care and the person who heads up community paediatric care. The timing of the homecoming is very much in our hands, although nothing can really happen until her current course of antibiotics is finished and the results understood (7-10 days). After that we can assess when we're ready to do an exploratory 'day release' trip or two, then a stop-over, and finally home for good. There'll still be regular check-ups at the RVI, and community paediatric nurses helping out each day at home. The house would also be kitted out with oxygen in each room via lines running here and there ffrom a central compressor in the kitchen.

So, all being well, she should be home in a matter of weeks. Watch this space!

Once more, many many thanks and best wishes to all of you following Elizabeth's progress via the blog, whether or not you've sorted out how to leave comments! We continue to be deeply touched by the goodwill flowing in our direction.

Axxx

Wednesday 8th & Thursday 9th June

Elizabeth is having a very good day today. She has been wide awake for hours this morning (she's normally an early evening kind of a girl) and enjoying her book as usual.

However, she is keeping us on our toes and has decided it's clever to grow an MRSA related bug on her bump. No need to panic (apparently) as she is on the right antibiotics and also she shows no signs of infection setting in (high temp etc). However, she is now in isolation nursing (basically this involves all staff who come into contact with her wearing sterile gloves and disposable pinnies and all of her linen has to be burnt rather than washed and used by other patients).

This is clearly my punishment for the fact that yesterday I went home to to see Chloe. We went to Splitz (dance class) and had a lovely time. I saw a lot of my friends and my (quite transformed) house too! My dad gave me a lift back and then came for a visit to see Elizabeth.

At 3pm we are having the big meeting to discuss Elizabeth being nursed at home. I want to get away Anna away from the hospital and its superbugs, so wish us luck!

Tuesday, June 7th

I have escaped to the hospital library to update the Blog as Elizabeth is having a cannula put in her hand - she needs another course of antibiotics. She has got something vaguely nasty growing on her bump, but it's nothing to panic about according to the lovely Mr Jaffrey (ace consultant).

Other than that madam seems to be very well and her temperature (which spiked a bit around 6am) is now normal.

Note to self - feeling a bit homesick? Nip out to the shops later for some speedy retail therapy and buy something frivilous and over priced from a shop which sells lovely things!

Monday, June 6th

Elizabeth continues to thrive. Mr Jaffrey, her consultant, gave her a good once over this morning (including giving her bump a good squeeze - it's tougher than I thought!) and he seems to be very pleased with her progress. Elizabeth was bathed and beautified in time for a visit from my mum and dad (who have taken over looking after Chloe from her dad's parents). Gill and Ted got to enjoy proper cuddles with their youngest grandchild at last!

Ella is back at school, which we hope will distract her from the fact that mummy is still away. I miss her too!

I'm off to the ward now for more quality time with the little one. She's as cute as a button.

xxx

Sunday, June 5th

Well, we've just had a lovely family weekend together in Newcastle - my mum & dad brought Ella in on Saturday morning en route back to Scotland (many thanks again you two!) and Ella and I got back to Hexham this evening, in preparation for school and work respectively.

Anna is still doing well; she's had three baths now and seems to really enjoy them. The exomph doesn't exactly look pretty but is coming along very nicely, thickening up and with new skin growing slowly but surely. The nurses paint it with Flamazine every couple of days after her bath and before applying the dressings; designed to promote skin growth, it's most commonly used with burns victims. Sadly Anna doesn't enjoy having the exomph dressed quite as much as she enjoys the bath that precedes it!

Anna is now getting all the milk she needs from Janie, albeit mainly via her NG (naso-gastric) tube. We're persevering with bottle-feeding, with some limited success today; however, limited progress here would not be a show-stopper in terms of getting Anna home. On that subject, we have a case conference with Anna's consultant, the Sister from ward 4, and our community paediatric nurse on Thursday to discuss next steps. While we're keen to get Anna home, it must be when we're all confident that it's the right time. For example, Anna's still got a nasal cannula giving a tiny bit of oxygen and this could be difficult to manage at home. The nurses are going to try to reduce this oxygen further tomorrow with the eventual aim of removing the cannula. We also need to consider what support we can get in Hexham - eg how Janie would manage with Anna and getting Ella to school, what do we do in case we're worried about anything, etc. All questions for Thursday - and we're mighty glad that we are in a position to even think about bringing her home!

Enjoy the pics below.

Axxx

Anna sees something VERY interesting in the book her Auntie Alison & Uncle Paul bought her ! 

Anna now has a definite look of Ella at the same age... 

A very proud Grandad ! 

Friday, June 3rd

Well, it's been all go since Wednesday - apologies for the day's absence! Anna was moved to Ward 4 Paediatrics yesterday which was great but a little scary. She now has her own room which is very nice and bright. It also gives us a lot more privacy and the chance to get to know her a bit better. There is a single bed in the room, so I stayed over with her last night for the first time since she was born. It was lovely!

The main aim of our Ward 4 sister, Carol, is to get us home. Anna's consultant knows that he can't operate before Anna is a year old and therefore would prefer her to be nursed at home sooner rather than later. We think that we may well be home in a week or two, with an awful lot of support from the district nurses etc.

Anna had her first ever bath today. It was with a special disinfectant bubble bath and she loved it. Having her exomph floating about must be a little like being back in the womb I think. We could also see that new skin is starting to grow nicely around the base and the top, which is wonderful.

Andy wet the baby's head last night with Ed and Al. He is in a terrible state.

Anna's visitors today include big sister, grandma and granddad and Uncle Ed.

A special mention in dispatches must go to everyone who has helped look after Ella over half term week, so thank you to Dendle and Margaret, Kim, Ed and Sheena; and Mark and Julia. You are all stars!

Janie
xxx

Wednesday, June 1st

I managed to grab a couple of minutes with Anna's consultant this morning. They are pleased with her progress and hoping that she will be able to move to Ward 4 in the next two or three days. Ward 4 is normal paediatrics as opposed to intensive care, so this is good news.

Anna had a lively morning with visits from her big sister, Andy and her Gran.

Ella is coping really well with all the upheaval, but wants to know when I am coming home. She had a fantastic day out with school friends yesterday (thank you, Kim!). Andy's mum is keeping Ella well entertained - they made a gorgeous pom-pom for Anna's cot and a card yesterday.

Andy is hoping to finally wet the baby's head this evening with Ed and Al. Lord knows he deserves a drink or ten!

Janie
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