A New Theory!

I took Elizabeth to see the resp team today. I won't bore you with all the details, but they have definetely backed off on the fundo and we are now exploring the possibility that Elizabeth may have a cow protein intolerance which caused her resp problems. Chris O'Brien is writing to the allergy consultant so that we can be seen ASAP.

J
xxx

Eggy

We had a visit to the RVI today, but not for the usual reason!

We had friends to dinner last night and I bought three very yummy 'Gu' chocolate mousses for dessert - one for Andy, one for Al and one for Vicky. Saint J ohad fruit salad. Owing to the incredible willpower of Vicky, one mousse was left over and this morning I decided to give it to Elizabeth just before we left for Sunday lunch at my mum's. WHAT A HUGE MISTAKE! Elizabeth said "Yum" and then things went raidly downhill with coughing...swelling...dreadful rash...vomiting...dash to Hexham hospital...Piriton...less rash....less swelling...ambulance to RVI.

We were really taken to the RVI because of Elizabeth's complicated history rather than her level of illness and we were finally sent home at tea time. Elizabeth and Chloe had enjoyed a lovely play in the Ward 5 playroom and Chloe read much of her book on Florence Nightingale (this term's big homework topic). Elizabeth is now to be referred to the RVI alergies consultant. It looks like an egg allergy, but they want to check for any others as she is still a vulnerable little thing.

This was not the lovely, quiet Sunday we were looking forward to (particularly A who overdid the single malt last night, bless him!), but at least we know about the egg allergy now and it's great that the consultant will check for any other problems.

J
xxx

Hooray

Elizabeth and I saw the sainted Bruce Jaffray today and Elizabeth's op has been postponed for now.

Mr J said slightly ominous things such as, "It wouldn't take much to persuade me to do it" and "I don't think she's out of the woods yet", but for now the cloud has been lifted!

We are going to have a quiet couple of months to keep Elizabeth away from germs and then hopefully we'll be able to have some fun way from home.

J
xxx

Chloe is seven!

Chloe is seven - how amazing! here she is with her (much-loved) cousin Hugo who was over from Holland. His sister Georgie can just be seen to the left.

After our challenging Christmas to New Year period, we had a lovely few days featuring visits from my sister's family and then A's parents.

Elizabeth's birthday party took place on changeover day. The kids made their own birthday tea which they loved and I would highly recommend this to other party givers!

J
x

Happy New Year!

Happy New Year! We had a great time seeing Nev and Mel in the afternoon and going to Chris and Steve's for the evening. Here are some highlights!

Merry Christmas!

Merry Christmas! I thought you might enjoy this festive shot of an infamous pirate, cuddling Elizabeth. I was hoping to share lots of cute photos of the girls and their cousins but all of the shots we took on the day were very poor (I blame the drink).
We had a wonderful Christmas Day at my mum and dad's, which went downhill from Dr Who onwards as Elizabeth started being sick. Over the next couple of days Elizabeth was followed by everyone else as we'd all caught the very aptly named Winter Vomiting Sickness (with the notable exception of my little niece, Georgie, who must have the constitiution of an ox).
Elizabeth also developed a severe ear infection and has been really bashed about, but has had NO RVI ADMISSIONS! We have had to reorganise a visit from my sister's family which is a great shame.
We are stating to get back on track and today (29th) we are moving towards normal. A and Chloe felt well enough to venture out and have gone to see The Snowman with a live orchestral soundtrack at The Sage. Elizabeth and I have stayed at home and recuperated.
I hope that you all enjoyed a healthy and fun Christmas.
J
xxx

Cuties

Just to prove that we do read the comments, here's a photo of les girls taken yesterday.

J
xxx

Elizabeth meets Dr Sturgiss VIP

Elizabeth and I went to see a very important man today - Steve Sturgiss, who was our consultant in foetal meds and carried out my c-section. We couldn't go in to the unit while Elizabeth had MRSA but we have called in a couple of times since without any luck. I feel very thrilled to have seen him as he treated us wonderfully well during the pregnancy, but I never got to say goodbye (as I was pretty off my face on morphine!).

Dr Sturgiss was grinning from ear to ear when he saw Elizabeth and thought that she looked fantastic. The last time he saw her in the flesh, she was literally minutes old. I took in a sheet of some photos showing Elizabeth's development (nothing too gory) and a short summary of her history, which is going to be shown to anybody expecting a child with a large exomph. I didn't get to see our lovely midwife-stenographer, Donna, but Dr Sturgiss promised that the whole team would be getting to see the shots including that wonderful woman.

Elizabeth has been well for nine and a half weeks now!

J
x

Bruce Jaffray Gives His Opinion

Elizabeth and I went to see Mr Jaffray this afternoon. I won't bore you with the details, but the upshot is that if Elizabeth stays out of hospital until January 8th her op will be cancelled/postponed, but if she has any admissions then it will go ahead in mid-January/Feb.

Mr J thinks that it's 50/50 that Elizabeth's problems are caused by reflux, but he has seen children with as few clinical signs as Elizabeth 'cured' by a fundoplication. I think that, ultimately, he feels that the potential for long-term chronic lung damage is too serious to ignore. We trust Mr Jaffray completely, so that's how things will stand.

J (having a drink tonight - yes, indeedy)
xxx

An Official Period of Prevarication

Hi,

We went to see the resp team at the RVI this morning. The great news is that Dr O'Brien thinks he may have been a little hasty regarding the proposed fundoplication and we have now agreed to enter an official period of "If it ain't broke don't fix it".

We are still seeing the surgeon on Thursday to get his views on the operation, but it would be surprising if he's really bullish in light of the what the resp team have now said.

So, this looks like a good result. We just have to hope that Elizabeth, who has now managed a record-breaking seven weeks without a hospital stay, continues to be in good health. She is now the size and weight of an average one year old.

I'll post the results of our meeting with Mr J on Thursday evening.

(A very relieved) J
xxx

It's Grim Oop North

We hope that you enjoy this shot of Newcastle Quayside taken this morning on our way to see a children's classical concert at the Sage with some (new!) friends.

On the topic of Anna's health, Mike McKean - ace respiratory consultant - called and we had a long chat. The upshot is that he is going to meet with the other resp consultant, the gastro consultant and Anna's surgeon about her case. Everything will be reviewed and they will revisit the decision to go for surgery and also look at what can be done regarding the "possible reflux" as far as meds are concerned.

Andy and I are very pleased with this development and we should know by the end of the month what the final decision will be. We will, as always, keep you posted.

Janie
xxx

Ella Bella

Here is a shot of Ella taken on Saturday (the poor child is very neglected on this blog I've noticed!). I know I'm biased, but she does have a most beguiling face.

Anna can walk (as in from room to room rather than a few steps). Hooray!!!!! She is so thrilled you would think she had invented it and often stares at her feet in amazement as they're moving.

Following on from my last post, I mailed the resp team today with some queries about the reflux. I am hoping that as a result we will be able to try some medication/dietary changes regarding the possible reflux rather than going straight for the surgical option.

Janie

Things are going well:

a) I went to an Abba tribute night last night - it was almost a spiritual experience for me. I am thrilled to have finally found a group of girl friends in Hexham who are as childish and into naff music as much as I am. We were the ONLY members of the audience dressed up out of 350 people, but that's rural Northumberland for you...
b) Anna has stayed well for almost four weeks! She caught a cold earlier this week and so we anticipated a trip to the RVI, but so far she is fine.
c) Katie is having a baby in May ( I feel like this entry should be in flashing neon!). We are now moving back to London, so that we can dote on him/her to the required standard (only joking Lucy!).

We have a date in late November for seeing Anna's surgeon, the sainted Mr Bruce Jaffray, to discuss the proposed fundolication, but he must be pretty bullish about it as Anna is already on his list for the procedure. We may be looking at a December op and up to two weeks in hospital, so I am getting my Christmas shopping now!

In the meantime, we have been going through Anna's history to see if anything comes up as another possible cause for her problems. What we can't understand is that if she has reflux (most severe in infants) then why didn't she have these respiratory problems before the age of 11 months? If Mr Jaffrey advises us to say ok to Anna's op then we will go for it, but we currently have real doubts as to whether it will achieve anything. Hopefully, time will prove us wrong.

Janie
xxx

There's No Place Like Home

Hi,

I am thrilled to say that Anna and I came home yesterday afternoon. What a marathon that was. However, we were on lovely Ward 6 with some really nice families and also had a room to ourselves, so it wasn't as grim as it could have been.

Following this latest episode the respiratory team are looking again at Missy's problems and are proposing the following:

In a couple of months, she'll have a fundoplication - basically keyhole surgery to tighten up the loose sphincter in her oesophagus. The new theory (and it is only a theory) is that Anna may have reflux which is making her lung problems worse. The procedure might cause her other problems but it is a reversible.

We'll need to see Mr Jaffrey, super surgeon, about the op as it is his call as to whether it happens. However, as the resp team are now concerned about Anna having long-term lung damage if nothing is done, I think it's likely that he'll go for it! The other worrying possibility is that if she has another couple of hospital stays they may take her into hospital until her op to keep her well and protect her from any more lung damage!!!! To avoid that nightmare scenario we'll be keeping Anna away from bugs as much as is possible - I'm thinking of investing in a little baby mask!

Janie

Hope springs eternal

Hi all,

Anna's been improving (in a zig-zag kind of way) and we're hoping that she'll be sent home today (Monday)... Fingers crossed!

In the meantime here are a couple of pics from yesterday.



Ax

Here we go again...

A belated entry... Anna was taken into hospital again on Wednesday night. The usual trouble - a runny head cold rapidly whizzed down to her chest as a nasty infection, meaning she needed oxygen, nebuliser, strong antibiotics and to be monitored very carefully. She was very poorly yesterday (Thursday) but looked a lot better today. We're hoping she'll be able to come home tomorrow or Sunday latest.

Ella and Anna are really good friends and playmates now so Ella's been very sad about being away from her little sis, as well as missing Janie who's staying at the hospital. Whatever happens we're visiting tomorrow though.

And it was all going so well... !

Anyway, we've been told to expect this kind of thing for the next couple of years, so I guess we'll just have to get used to it.

On a happier note, happy birthday to my lovely big sis Alison!!

Ax

Scan results

Hi,

We got the scan results for Anna today. Thankfully she does not have vascular ring and won't need an op. Hooray!

However, she does have emphysema plus some quite extensive scarring on her left lung. Neither of these are reversible and they have reduced her lung function permanently, but at least we now know the full extent of her problems. The respiratory team have put together a plan to keep her well as much as possible this winter and we also have a 'Golden Ticket' giving us instant access into the RVI.

I managed to have a quick chat with our number one hero and top surgeon, Mr Bruce Jaffray. He has a huge smile on his face every time he sees Anna.

Janie
x

Walkie Talkie

Hi,

Anna took her first steps yesterday! It has taken her longer to get there than some children because of her weak tummy muscles so we are truly thrilled.

Janie

Scan date

Hi,

Anna's CT scan is set for the 11th September. We'll keep you posted on the results.

Those of you who worry about my sanity will be relieved to hear that I have had a lovely few days celebrating my birthday (like the Queen, I prefer to celebrate over a period of time).

I received lots of cards and pressies on Friday and then went on a rare date with my husband in the evening. Saturday was also excellent as I saw 'Volver' - the new Pedro Almovodar film - with my friend Chris. What a wonderful film!

I still have a luxury spa day to look forward to, so I'm sure that you will agree that I am a very lucky girl.
Janie x

PS: Andy and I love this shot of Anna. She looks so grown up and it captures her 'sparkle'!