Here's Elizabeth in a sleep-suit which actually does up over her exomphalos (see below for what's underneath!). The wires in the foreground with the 'Change on Wednesday' tag is the 'Central Line' - which is used to administer antibiotics and a tiny bit of TPN (the nourishment mixture) directly into her bloodstream. Other than that, the white wire you can see at Elizabeth's foot leads to a monitor stuck on on her foot with a plaster to measure blood oxygen; the white tube going up her nose is the naso-gastric tube that the milk is still going in for the moment; the other tube in her nose is just blowing the tiniest whiff of oxygen, but is only a few mm long & isn't as intrusive as the ventilator was. 

Elizabeth had her eyes open for a good couple of hours today, and took the opportunity to take in a book or two. Here you can see how Elizabeth's exomph has been covered with a dressing, with a kind of hair net thing over the top. With this in place she gets enough support to be able to lie on her back quite comfortably.

Aunty Sheena came to visit today.

 

Tuesday

Bank Holiday Monday was a good day for all the Frenchies. Chloe came in for a visit with her Grandma and Granddad and I took her off to the lovely park opposite the hospital for some serious quality time (ice cream and everything) giving Dendle and Margaret the chance to get to know their latest grandchild. A then stayed over for the night at Crawford House. We enjoyed some lovely visits to see Elizabeth together and went out for a Chinese meal! What bliss.

Elizabeth continues to do very well. She had an infection on her exomph, but they decided on a course of antibiotics and the infection seems to have come to nothing (touch wood) at present so that's good news. She is guzzling down good feeds (well, as much as you can guzzle through a nose tube), but is still very sleepy indeed. She is no longer on morphine, but apparently this can take a while to work through the system, so visitors are very lucky to see her with her eyes open.

Thanks again for the lovely messages. Unfrotunately we can't access our email here at the hospital (blocked by the IT people for some reason), so sorry that I am not emailing anyone direct!

J
xxx

Sunday 29th

Hi all,

Anna's had another good day today... the wires are starting to deplete as she continues to do well - the heart rate one came off today. She's only receiving the tiniest bit of TPN as her milk intake is now right up, and she's barely sedated at all. The nurses have covered Anna's exomphalos with a loose stretchy support, which means that she can now wear a little front-fastening baby-gro, and her overhead heater can be turned down. It also makes it easiier to move her, so Janie enjoyed a cuddle with Anna earlier today. Anna looks so cute with her baby-gro on - I'll get some photos tomorrow, I hope! She looks more like a 'normal' baby - albeit one with a very large beer-belly !!

My mum & dad are staying this week so Ella is all set for more spoiling and I'm being very well looked after. Janie's still at Crawford House which is an absolute Godsend - Janie can see lots of Anna but go and have a proper rest when needed; and it's a mere 10 minutes from Marks & Spencers!!

Thanks once again for all the messages - it's really helping us along.

Ax

Saturday 28th May: Hurray! No ventilator! Anna's ventilator was taken off today, just in time for a visit by her auntie Alison and uncle Paul. 

A delighted Janie with Anna today. The syringe suspended by the ribbon is for milk to go in, via Anna's nose (naso-gastric tube to be technical)! 

Plan for Anna

Hi,

I've just enjoyed a late morning visit with Anna (having confirmed that daughter number one is going to be okay after our 'interesting' night - see Andy's entry below) and she's looking lively, a nice shade of pale pink - as opposed to the fuschia we've become used to.

I was looking through the Blog and realised that there's no up-to-date explanation of what the doctors intend to do regarding Anna. As Andy said a few days ago, they have decided to opt for conservative treatment. That means that rather than use a silo bag or surgery to force her exomphalos to fit inside her narrow trunk they wait for her body to develop and then operate. This means that she will stay in hospital until she grows skin over her exomph. This could take up to October. Then she'll come home with us and she'll come back to the RVI at perhaps 12 months to have the big op. They would then do a follow up at about 4 years to make everything look pretty and create the all important belly button.

So, a pretty long hall but we are thrilled to be able to think about the future in terms of Anna at all! In the short term Anna will remain in intensive care while she is on a ventilator, but once she is breathing for herself and they are pleased with how she's doing she will move onto 'normal' paediatrics. We will be thrilled when the ventilator comes off as we will be able to hold her more often and, hopefully, she will be able to breastfeed once more.

Lots of love and thanks again for the lovely messages,

Janie
xxx

Friday

Hi all,

Ella and I are back in Hexham as Ella's having her annual asthma episode (prompted by some kind of pollen - wish we knew what !!). So after a sleepless night for all of us the cavalry are coming in the shape of my mother-in-law and we'll be based here for the next few days at least, while Janie stays at Crawford House.

Anna continues to do really well; the ventilator is being turned down and down so she's doing most of the breathing now, with only about 8 breaths a minute from the machine.

The reduced morphine has meant that Anna's much more aware too. Having not seen her eyes open for over two days (and thelast time she was so zonked her eyes were practically revolving in opposite directions), I had the treat of Anna's undivided attention for a good half hour last night. Happy to report that she can follow moving objects - including my ugly mug. So that's the first time she's definitely been aware of me. Anna's face has lost a lot of the puffiness so we're seeing what she 'really' looks like now. And that's beautiful. More photos soon!

Axxx

Wednesday - first blog from Janie

Hi,

I've discovered that the hospital library offers free web access. Yippee!

I've just had another long visit with Anna (while her father picks Ella up from school and takes her to pop dance) and she's still having a great day. Her catheter is out, she is far less doped up - her time as a morphine fiend looks like it may be shortlived - and she is acting altogether much more like a normal baby (grabbing her ears, trying to pull all her tubes out etc).

Uncle Ed came to visit this morning, having been refused entry on Sunday as Anna was so poorly.

Thanks very much for your Blog comments, cards, flowers, texts and so on. They have been enormously appreciated.

Andy, Ella and I are going to spend another night in Crawford House, which is a special facility run by the Sick Children's Trust for families. It is far nicer than our house and it has been lovely having all four of us in one place, although Ella likes to keep her visits very short.

Janie
xxx

Wednesday

Elizabeth continues to be stable and comfortable; although she's still on the ventilator, she's doing some breathing on her own in between puffs, and she's getting all the oxygen she needs out of the air - they're not adding any extra oxygen at all. Skin is starting to grow over the exomphalos which is also good.

She is taking milk very well, although this is being supplemented by TPN (see below) to really get her nutrition intake up.

So, all in all things are looking quite hopeful at the moment.

Monday

A good day today. Elizabeth's sedation was cut somewhat and she's been a lot more alert and comfortable. She also had several feeds of milk, so the TPN (total parental nourishment) via the line in her chest may not be necessary.

We also found out that we've got a place in Crawford House, a residential facility for families onsite at the RVI - and a couple of minutes away from the ward. So we will be staying there for the next few days. I'll be doing Chloe's school runs from there. Updating the blog may be difficult, so I may be calling upon Ed's services again !!

Once again, many thanks for the lovely messages via texts, voice mails, blog comments, emails etc etc. We love it !!

Enjoy the pics below.

Anatomy of a life support system! The big tubes going into Elizabeth's nose are hooked up to the ventilator; the tube in her chest is to administer drugs into her bloodstream (and also nourishment if necessary - although the good news today is that she's taken a few feeds of mik, via the small tube up her nose that goes into her stomach. There are also various sensors attached here and there to measure temperature, heart rate, blood pressure etc etc. A further line goes into her foot slowly administering various other things. All in all it's quite a palaver untangling everything when we turn Elizabeth over !! 

Sunday

Elizabeth's had a reasonable day today; she went into theatre today to have a line put in to one of her veins to allow 'proper' nutrition to go in, as opposed to the dextrose solution she's had thus far. 'Proper' nutrition means vitamins, protein and a bit of fat - albeit straight into the bloodstream rather than via her stomach, bless her.

All in all things are looking OK at present. Vital signs are all good, and I left her this evening quite comfortable and having had a peer at her rather strange surroundings once the lights were dimmed a bit. Guess she's a nocturnal kinda gal...

Another pic from Thursday, when Elizabeth was an hour or so old. The ventilator makes it difficult to get a nice pic at the moment. 

This is a pic from Thursday. The perspective in the pic of Chloe and Elizabeth was a bit wiggy, and made it look like Elizabeth was about the size of an average 3-year old... this is to show that she is actually normal-sized !! 

Saturday

Many thanks to Ed for updating the blog yesterday!

As Ed said, yesterday was very difficult. After such a promising start Elizabeth ended up on a ventilator after really tiring herself out breathing. But now, with the ventilator and a bit of sedation she's looking quite comfortable - albeit with lots more wires & tubes. I guess we're now where we thought we were going to be, before the unrealistically good first day. Hope that makes sense.

Janie and I are spending a lot of time with Elizabeth, although I'm about to take Chloe to the theatre! She's being nicely spoilt by her gran, grandpa and auntie but we need to ensure she sees as much of us as possible.

next day

A much tougher day today. Elizabeth's breathing wasn't quite right so she was put on a ventilator but this seems to have been very beneficial and she is now stable and comfortable. Her mum is up and about and sounding like herself (a midwife said ,"You wouldn't believe she had a section yesterday").
Bit of scant blog here as its all second hand through Uncle Ed as Elizabeth's dad is staying at the hospital overnight.

Ta-daaaa!

Well, what a day that was.

Elizabeth was born at 9:30 this morning. She weighed 9lb 1 oz, but much of that is in the fluid in the exomphalos. She's a good-sized baby though!

There's nothing wrong with her lungs - she had a good cry as soon as she emerged. She's not needed any assistance breathing thus far, which is a great start.

She was assessed in a room close by Theatre to make sure she was comfortable. After being acqainted with her mother for a few mins she was then whisked down to the intensive care where she'll be for some time I suspect.

The baby's exomphalos has been bandaged up with compression bandages so she looks quite strange (see pic) but she's able to enjoy a cuddle - so her mum and dad have capitalised on this considerably. Her mum is doing really well, and I was able to wheel her the 3.5 miles (or so it seems) from her ward down to where Elizabeth is, much to their mutual delight. Chloe also visited and is very impressed with her (again, see pic)!

The consultant has decided that there won't be any surgery in the immediate future so it's wait and see. He expects the exomphalos to reduce in size as gravity (and the absorption of some of the fluid) does its work.

So, all in a promising start. We've been warned that we can expect ups and downs and it'll be a long haul - many months - but we remain, in her mum's words, quietly optimistic. Elizabeth sure seems like a little fighter.

Again, thanks to everyone for the lovely emails, texts and phone messages. We really do appreciate it.

Will update in a day or two - signing off for a (very deep) sleep now...

Elizabeth and her Super Sister! 

Thank you

Thanks to all for the lovely emails and messages of support - this is very much appreciated.

Countdown is progressing...

Name suggestions?

Well, we're only 36 hours from 'lift off', we still haven't agreed on a name and we have known the sex of the baby for months! Chloe had a vision via her mermaid doll, Ariel, in which the baby demanded to be called Meera. Sadly, we are not keen on the name (or being pushed around by a plastic doll!).

Any suggestions will be gratefully received - the genius who comes up with the winning name will win a bottle of bubbly!

Breaking baby news!

We are expecting Child Number Two imminently, as many of you already know. Since Christmas, we have known that the baby has an abdominal wall defect called an Exomphalos Major. As lots of people have asked about visiting etc, we thought that we would send out some info before the baby arrives.

The baby will be delivered by C-section on Thursday May 19th around 9.30am at the RVI (Royal Victoria Infirmary) in Newcastle. We know that ‘it’ is a ‘she’, so Ella will have a little Geordie sister!

We have been given odds of around 50-75% survival for the baby, but the RVI is a brilliant hospital and we are quietly hopeful that we will be able to bring home a healthy little girl eventually. If the problem can be fixed then the long-term outlook for the baby is very good and she will only have a nasty scar on her tummy to remind her of her tricky start in life.

If you would like to send cards the address is:

Maternity Unit
RVI
Queen Victoria Road
Newcastle upon Tyne NE1 4LP

We would prefer not to receive gifts for the baby whilst she is in hospital. We will, however, send out an announcement as soon as she is home and hope to receive a deluge of gorgeous presents!

Andy will try to update this blog every day - not to say that he'll never be able to speak to anyone, but this seems a good way to keep everyone updated.

Visiting – the doctors cannot say until the baby has been delivered exactly what procedures will be carried out or when. Our daughter will be on a ventilator for at least a couple of weeks in a small ward with other very poorly babies, so for this initial period it’s probably wisest that only grandparents, aunties and uncles visit her, just to keep numbers down! Unfortunately, no children are allowed on the paediatric surgery ward other than siblings, but things will be easier once the baby moves onto the ‘normal’ paediatric ward. We may be in for a long haul (up to five months), so any visitors will be very welcome!

We hope that this has been useful. If you would like to know more about the condition, there is a great leaflet produced by Great Ormond Street Hospital available at:
www.ich.ucl.ac.uk/factsheets/families/F020102/abdominal_wall_defects.pdf

You can also get lots of info from the GEEPS group at http://www.geeps.co.uk/

Think of us on the 19th! We will keep everyone posted and hope to be spreading good news soon.

Lots of love,

xxxx