Christmas fun...

Granny and Grandad with two little reindeer (Summer and Isabella)

A group photo - Granny, Grandad, Auntie Lia, Uncle Stu, Isabella,
Mummy, Daddy and Summer

Summer under the tree surrounded by all her pressies!!

Summers present from mum and dad - as you can see - she loves it!!

Merry Christmas Everyone!!!

Merry Christmas and a Happy New Year to everyone from Emma, Matt and Summer xxxx

Day out with Grandad

Summer (and her mummy and daddy) had a day out today with her Grandad Bob. We met in Chichester and had a lovely lunch followed by a walk around the quay.

Oma has come to visit

Summers Grandma (Oma) from Germany has arrived and as you can see they are already having lots of fun together!!

Summer had her latest checkup on Tuesday at Southampton Hospital. This appointment involved a full scan to check that the blood thinning drugs are working and to try and determine whether the blood clot has started to disperse .

The great news is that the clot has gone completely. "Nurse mummy" and "Doctor daddy" must have done a good job with the injections!

So the last line that Summer had going into her leg has been removed and apart from a few bruises she seems absolutely fine. As you can see from the picture above she can now lie on her tummy and look around at the world from a different perspective!

Update...

Summer is continuing to do really well. She has put on weight and is now eating a good amount of milk each day. She is trying to sit up by herself as you can see from the picture above and has also learnt how to blow raspberries which she finds hilarious - mummy and daddy find it very funny as well!! We are back at Southampton Hospital on Tuesday for a scan of Summers leg to see if the blood clot is still there or has dispersed. Fingers crossed.

Summer meets her new cousin Isabella....

This weekend we finally met Summers new (and first) cousin Isabella Lily Bradley. She was born on Wednesday 19th November - right in the middle of all out hospital drama with Summer!!

Matt looking after both the girls!!!

The girls sitting together



Her mummy and daddy (Lia and Stuart) are thrilled to bits with their gorgeous daughter even if she is keeping them up every night - we've all been there so can definitely sympathise!!

Look how well she is doing......

Summer seems to be recovering well. She is now eating nearly full feeds and managing to keep it down (touch wood!). She is not having any pain relief but seems to be absolutely fine - its hard to believe she had major surgery a week and a half ago. I am still having to inject her twice a day with the blood thinning drug needed to disperse her blood clot but hopefully that won't be for too much longer.

In herself Summer seems much happier - lots of smiles and giggles for mum and dad!!!

Summers Home

Finally Summer is home !!! We got back last night at 8.30pm ish and its a wonderful feeling to all be together as a family again.

The surgeons are really impressed with how quickly Summer has recovered - she is now drinking some milk , although not her normal amount - but we are getting there. Her bowel seems to be working fine and she has a large crescent shape scar to show for this adventure!

Whilst in hospital Summer developed a blood clot in her right leg where her central line was put in. She is now being given blood thinning drugs to try and disperse the clot. We were allowed home on the condition that Nurse "mummy" gives Summer the injections twice a day - not an easy task if any of you know how squeamish I am! Her leg will then be scanned again in two weeks to see if the clot has reduced or hopefully gone completely.

Now we are home we are all looking forward to seeing Summers new cousin - Isabella Lily who was born on the 19th Nov weighing 6lb 3oz and also getting some normality back into our lives.

Hospital Update...

I am happy to report that Summer has been taken off her ventilator and is breathing well on her own. She has also been moved out of Intensive care and onto a Surgical recovery ward.

She is still currently on morphine for the pain relief and so is a bit drowsy but she definitely looks more like herself again. No smiles yet but here's hoping!

I tried to feed her this morning but at the moment she is not taking any milk . The doctors said that her bowel was quite bruised during the operation so may take a few days to start working again.

Hopefully she is on the road to recovery now.

Matt and I would like to thank everyone so much for all the kind words of support which really helped us during this difficult and upsetting time.

Diaphramatic Hernia

This is a very quick update to let everyone know that Summer has been taken into Paediatric Intensive care Unit at Southampton General Hospital due to a problem with her breathing.

She became unwell yesterday and the short version is that she had a small hole in her diaphragm and two thirds of her bowel had worked its way through into her lung cavity and collapsed her left lung causing her to have problems breathing. She has had an operation this morning to move the bowel down and close the hole. Her lung was then re-inflated.

She is currently stable - on a ventilator and heavily sedated.

We will have our mobile phones with us but they will be turned off whilst in the unit.

Wonderful day....

Today was Summers latest hospital appointment at Southampton. After checking Summers exomphalos they said that she no longer needs to wear her dressings as there is only a tiny amount of skin left to cover it - about the size of an old half pence coin. So for the first time ever Summer has no dressings over her tummy - what a wonderful day for her and for us!! It was quite emotional.

The doctors were very impressed with her weight gain - she is now 11lb 13oz and commented that she looked really well. We spoke to her surgeon who has now said that he may now operate on Summer between 1 and 2 years old. This is dependant on how her muscles grow as they will need to be joined across her stomach. As she starts to sit up and walk the muscles will grow stronger which will make it easier for the surgeons. Also after prodding her exomphalos the surgeon said he thinks the liver has definitely gone back into her abdominal cavity and that it now just contains bowel.

A really positive visit!!

Big eyes!!

Piccies

Summer in her "thinking" pose!

Starting to teethe so will chew anything she can get her little hands on!


Summer and Daddy

Daddys girl.....

Holding hands...

Gazing at each other......

..... Like two peas in a pod!

First giggles....

We have had lots of Summer smiles for weeks now but this week we have started to experience her first giggles!! They are contagious and end up with all three of us laughing our heads off.
It is the most beautiful sound to hear from our special little girl and makes the difficult weeks throughout my pregnancy seem a life time away.

Summer is on the GEEPS website...

Summers "story" has been loaded onto the GEEPS (Gastroschisis Exompholos Extrophies Parents Support Network) website. The address is in our links : www.geeps.co.uk . At the moment she is on the front page and you can select her story from there . Otherwise you can access it through the experiences tab.

I found the GEEPS website so helpful during my pregnancy especially the stories that other parents had posted so hopefully her story will go on to help others through what can be a really difficult and stressful time.

Meeting the Great- Grandparents

Above is a picture of Summer with her Great-Grandad , Grandma Linda (Oma) and Daddy.

Below is Summer with her Great-Grandma, Grandad Bradley and Mummy.

Hospital update...

Today was Summers latest check up at Southampton Hospital - Childrens outpatients. They were very impressed with her weight gain - nearly two pounds since they last saw her 5 weeks ago. She is now 9lb 10 oz and nicely rounded all over!

The skin over her exomphalos continues to grow well and they anticipate it will be fully covered in another months time. The doctor in charge of Summers care simulated what they will do in her operation and pushed the exomphalos back down into her abdominal cavity for a brief minute. It was amazing to see what her tummy will look like when completely flat and gives us something to look forward to. The fact that she was able to do this is means she is fairly positive that they will be able to perform the closure when Summer is older as there will be plenty of room for everything to go back in!

On a practical level the doctors are now happy for Summer to go into her normal car seat as there is less risk of her exomphalos rupturing and it is also much smaller then when she was first born. This means we do not always have to take her carry cot in the car giving us room to take passengers!

A very positive visit!

The Rudd family photo shoot....

As promised here are some pictures from the Rudd Family Photo Shoot (well it was actually our 1st wedding anniversary photo shoot) which Summer was the main star of!! The three of us!

Our gorgeous daughter - happy as always!

A formal shot!

Summers checkup...

Summer had her eight week check up this week (slightly late as she is ten weeks!) which meant she saw the health visitor, doctor and nurse at our local surgery.

• The health visitor weighed and measured Summer. She now weighs 8lb 12 oz which means she is still steadily putting on a good amount each week. Her length is 52.5 cm - she has grown by 4.5 cm since birth and head circumference is 40cm which is an increase of 6cm - must mean she has a big brain!

• The doctor gave Summer a thorough examination and declared her "perfect in every way" apart from the obvious exomphalos!

• Then it was a visit to the nurse for the first of her immunisations - poor thing. Summer had two injections. One will which cover her for : Diphtheria, Tetanus, Whooping Cough, Polio, Influenza and one for : Meningitis , Pneumonia and Septicaemia. She was very brave and the only effect seemed to be that she was very sleepy and slept for the rest of the day and night - I think mummy was more upset by the injections!

More piccies...

Summer and her giraffe

Look at the gorgeous smile!

Summer and mummy getting ready for a party

Summers first holiday

Family Rudd on holiday

Outside the lodge

We took our first holiday as a family this week down in Croyde - North Devon. We stayed in a lodge at the Ruda holiday Park with Emma's parents and had a fantastic time. Weather was great and Summer got loads of fresh air. We visited Woolacombe and Lynton & Lynmouth but mostly just rested - definitely what the doctor ordered!

Chilling with Grandad

With Granny and Grandad

More weight gain...

Look at those long legs!!

Chatting with daddy

Gorgeous girl

Summer was weighed again this week and has put on another eight ounces . She is now eight pounds exactly. The skin over her exomphalos is also growing really well - it is amazing to watch her body basically repairing itself.

She's a model!!

Today the family Rudd had a photo shoot done by Photofinish (our wedding photographers).

It was actually a 1st Anniversary photo session for us but as mini Rudd joined us a week before our wedding anniversary we thought we would let her join in as well!!

As soon as the photos are ready we will post some on here.

Southampton Hospital Update

Summer having a snooze on mummy

Summer loving her new bouncy chair

Chilled out on her bean bag!

We had Summers latest appointment at the Southampton General Hospital - Children's outpatients on Tuesday 26th August.

They were pleasantly surprised by her weight gain and after weighing her themselves announced she has put on another two ounces since Friday so now weighs 7lb 2oz.

Summers surgeon who will eventually operate on her tummy was called in to have a look at her exomphalos. His jaw visibly dropped when he saw how much it has reduced in size - he hadn't expected that at all. The skin is growing really well up the sides of her tummy and will hopefully fully cover the exomphalos in a couple of months.

Due to Summers great weight gain and fantastic skin growth over her exomphalos, Southampton said they do not need to see us for another five weeks!!!

Exomphalos shrinking....

At our last weekly visit to Southampton Hospital for Summers check up we were told that the exomphalos has reduced in size by half since her birth. This is partly due to fluid loss but mostly because some of the bowel has started to go back into her abdominal cavity by itself . This wasn't something we or the doctors expected to happen so was a lovely surprise. Looking at the pictures we took of the exomphalos straight after Summer was born and comparing it to how it is now shows an amazing difference. We drove home smiling all the way!!