Bonjour tout les monde

As you have probably guessed, we've just returned from our first holiday abroad with Thomas. With all the equipment you need to take for a small person, we decided to drive down. We caught a later afternoon ferry from Dover which arrived in Calais just after 8pm and then drove until 1am while Thomas slept in the back in his special carrycot (it straps baby in and then straps into the car using the seatbelts). We stopped for a few hours sleep at a motorway hotel near Dijon and continued our journey in the morning reaching Albiez le Vieux just after midday. This reduced our stops to just filling up with petrol and suited Thomas really well so our holiday started fairly stress free.

Our destination was in the French alps. Last year, the Smith family invested in an old rundown farmhouse in a very pretty village in the mountains which also happens to have about 50kms of skiing. The house was in need of a lot of work and Grandad Peter has spent about 12 weeks over the last 15 months knocking down walls, building new walls, insulating and installing various toilets, bathrooms and of course a kitchen. Of course the rest of the family has helped where possible but often more of a hindrance! Although this was our first holiday, our bedroom in the farmhouse was still just bare plaster so for the first four days we were very busy painting, wallpapering and tiling. Mummy and daddy rented a small Gite for five days and took turns looking after Thomas and cooking for everyone. By the end of the four days, the room was looking good and now needs a little plumbing and electrical work doing before we add a bed, curtains and some loving touches. We're hoping it might be possible to visit some time this winter and even perhaps manage a bit of skiing!!

We left Albiez on the Friday and drove a little further south to Avignon where we allowed ourselves a couple of days R&R. The weather was fantastic, sunny and warm which suited us very well. It was a shame we had to leave on the Sunday however, we had one more night to look forward to in Puligny Montrachet, the home of our favourite white wine. The journey home wasn't quite so easy as Thomas did get frustrated at being locked into his car seat for longer periods however, mummy sat next to him in the back and did her best to entertain him.

Thomas is obviously growing and now weighs about 14½lbs. He's smiling, cooing and laughing lots. He is having some problems with his left shoulder and arm which we were told months ago could happen as a result of his brain hemorrhage. This will have some affect on his mobility development so his neonatal consultant (Tosin) has referred him to a specialist physiotherapist and we are currently waiting for an appointment. There have been no other problems (touch wood) in particular relating to the shunt in his head. There is a 30% chance of a problem in the first year so we're not out of the woods yet.

Apart from holidays, hospital visits and visits from the local health visitor, Mummy and Thomas are very sociable. On Tuesdays, Thomas has a little sing along and exercise at a local yoga group. Every other Friday, he gets to see his old friends from the neo-natal unit, Tom & Jack the twins, Aayla the little girl born fifteen weeks prematurely and Joshua who was born about two weeks after him. In between all this mummy tries to catch-up with as many of her friends as possible so time flies by.

Well that's all for now so we'll finish with a picture of the little star himself on holiday in France!

Another month flies by

Yes despite my promise, it's been a month since I last sat down to update Thomas' blog. As usual, this is due to Thomas and his parents finding so much to do!! Since the last update, we've been to Cumbria, enjoyed a day's cricket, visited Thomas' neo-natal consultant and had visits from Auntie Frances, Auntie Sandie and Uncle Gary, as well as both sets of Grandparents.

Before I continue though, I'd just like to say congratulations to Roger and Gill on the birth of their new baby girl, Charlotte Sarah-Jane Burbidge on Friday 15 September. More congratulations to big sister Emily!!

Dr Otunla (his neo-natal consultant) was very pleased with Thomas' progress so far and thought he appeared to be developing normally. However because of the shunt, he will be referred to a specialist paediatric doctor for a thorough assessment. He explained that at this stage, the assessment will look for mild physical problems that can then be helped using physiotherapy and exercises. Thomas has been smiling and cooing for a while now and loves standing on our laps. He can hold his own head well and has good eye contact. The next step for him is lifting his head when he's on his tummy and rolling over but he's trying to do both already so it won't be long.

Thomas is now eating solids for breakfast, lunch and dinner and is steadily gaining about 5ozs a week. Sally, his health visitor, came yesterday to weigh him and guess what...he's now a whopping 12lbs 10ozs. Next month, we're planning to introduce fish and chicken to his current diet of baby rice, porridge and pureed fruit and vegetables. He's still wearing 0-3 month clothes but is already on his fourth size of nappy so it seems a long time ago that he was not much bigger than a hand.

At the end of August, Thomas visited his Grandma and Grandad in Cumbria. It was a long journey for such a small person which meant having a lot of stops for feeding. Normally it takes us between 5 and 6 hours but this time it took 8 hours to get there and 9 hours home. We are hoping to drive down to France for a holiday in October so have already decided that it would be simpler to drive through the night when Thomas is asleep!! Of course, the journey to Cumbria was well worth it as Thomas got to meet his Great Aunties, Margaret and Alma, and Great Uncle Frank as well as cousins Susan, Marie, Katherine and Matthew. He also met his second Great Grandma (the lucky boy has two) and lots of family friends so it was a very sociable weekend!!

His other exciting trip this month was a lovely day out watching cricket at Sir John-Paul Getty's private cricket ground on his estate in Buckinghamshire with Mike and Juliet from Caspian.

This month's photo is a family shot taken in Cumbria..

Hospital check up

Time definitely flies when you're looking after a small person. It's already been three weeks since my last update, life is definitely flying by and before I know it, I'll have to go back to work. Still that's not for a few months yet so I will be able to enjoy life with Thomas a bit longer.

We've not been away since our last update as Chris has been working very hard and sometimes getting just one day off a week. However, we have been back to St Georges for a check up. Thomas had another CT scan and then we saw the surgeon that carried out the operation. Thomas looked absoluted tiny in the CT scanner but did very well in not moving. Mr Stapleton said that the scan looked good although the brain had collapsed slightly and this had caused more bleeding but this time between the brain and the skull and so there was now a build up of fluid here. He had mentioned that this could be a side-effect of the operation as by removing the fluid from the ventrical you would effectively be left with a hole with nothing to support the area around it. However, as Thomas wasn't showing any signs of discomfort or sickness, he said that they wouldn't drain it and as the brain grew it would be less of a problem. We are obviously pleased that the shunt is doing its job however, it would have been better if there wasn't any more bleeding and therefore, potentially more damage to his brain.

Thomas is still progressing very well. He's smiling, laughing, making lots of vocal noises, holding his head steadily and likes standing up on our laps. He's even trying to lift his head and turn over when he's put on his tummy on his playmat. All this even though he's nearly six months old and still weighs just 10lb 4ozs, the birth weight of some babies!!

At some point later this year, he'll have a full assessment to check his development and physical ability as well as another eye test so we can only wait and see.

We still keep in touch with the Foley foursome and the twins are also doing well. Jack has been back in hospital for the reversal of the intestine operation that he had when he was just a few days old and was home by the end of the week - what a star! Tom is also doing well although being the smallest is having some problems putting on weight quick enough. Though this is more likely due to the fact that he keeps his mummy and daddy busy all day because he doesn't like taking any naps!!

We're off to Cumbria later this week to introduce Thomas to the rest of the clan so will tell you all about that next time. Today's pic is of Thomas having a cuddle with Uncle Johnny.

The busy life of a baby

It's amazing isn't it? I just can't believe how time consuming a small baby is and the main reason that I've not had a chance to update you on his progress.

Thomas and I wake up at about 9am and by the time he's had something to eat, spent an hour on his playmat while his mummy washes up all the overnight bottles and tidies upstairs, it's 11.30. Then while he has a short nap, his mummy leaps onto the treadmill for half and hour to try and get her figure back. Then more playing with mummy before he has some more food and then a longer nap when his mummy finally gets a couple of hours off to do the washing, check the emails or pop to the shop to get dinner.

Before I know it's 4pm and time for more playing, bathing, feeding and finally sleeping at around 7pm. Phew!!

And another thing, why does it take so long to wind a baby?? I must spend between 2 and 3 hours a day in search of wind from Thomas' tummy. Sometimes, it's just impossible and I give up only to lay him down and for him to scream two minutes later from the discomfort so we have to start all over again.

Thankfully, I love spending time with Thomas so I don't really care that he takes up most of my day especially when he looks at me and gives me a big beaming smile. I only wish that I didn't have to do the washing, clean the bottles, etc. because then I could spend a few minutes longer entertaining him.

Since my last post, we've been out and about visiting family in Brighton and Wales as well as enjoying a night away in a B&B in Whitstable (here's Thomas with his daddy walking along the seafront).

We've also had another new addition to the family as a cousin has just had a little baby girl called Bethany and Thomas has already been down to Peacehaven to meet her (here's Mark with his new daughter Bethany).

I'll try not to leave it so long before the next post.....

Settling down again

Well life is beginning to settle down again since Thomas came home again two weeks ago. He was a little grumpy the first week but I guess that's not surprising when you've had a hole drilled through your head. This week, he's been so much happier and is enjoying playing on his playmat and going out in his pram for walks. We've been slowly catching up with friends and family and Thomas has already had lots of visitors this week!!

He's pretty much fallen into a good routine that includes sleeping from 7pm to 9am, waking just for feeding so mummy manages to get enough sleep too. Obviously there is the occasional blip but I guess that's what life is all about eh?

We've had a couple of outings this week to Tescos and Mothercare - oooh we know how to live. We invested in a new gadget, a portable swing for indoors which is fab as it seems to provide some entertainment as well as soothing time when he's feeling a bit grumpy or when mummy's doing stuff in the kitchen.

We also visited Thomas' consultant on Tuesday for his six week check up. Dr Otunla was very happy with him and when we measured his head it had reduced by 1cm so his shunt seems to draining the excessive liquid well. He was also weighed and is now a whopping 8lbs 5ozs. Dr Otunla also suggested that we stopped one of his drugs for Reflux to see if he can manage now that he's bigger and touch wood we've had no problems. He still has an Apnea monitor which is very reassuring during this period although occasionally slightly irritating when the lead gets caught on something and obviously hurts Thomas as it gets pulled. While we were at the hospital, we also popped into NICU to see everyone and show them how much he has grown since he left.

That's all for now and here's a picture of him enjoying his new gadget!!

Home again

Once again, we've had a trying week though probably not as traumatic as it must have been for a very small boy. However, Thomas seems to have a remarkable ability to recover as yet again he has recovered, this time from surgery, in record time and by yesterday was deemed fit enough to go home. Now he's home, he already seems more settled and we can see his head reducing in size as the fluid begins to drain.

As you can imagine, it all came as a bit of a shock to us. Every week, a Neo-natal nurse visits Thomas as home and there had been no indication of any problems until she measured his head last Friday. Normally, a baby's head should grow at 1cm a week but Thomas' head had grown 5.6cms in two weeks. Within a couple of hours of Jennifer's visit, Thomas' consultant at St Peters (Tosin Otunla) called to ask us to take him to A&E for further examination. Thomas had a CT scan later that night and the consultant paediatrician on duty sent the pictures to St Georges Hospital in London, as they have a special paediatric neurological department. As you the know, the rest is history.

As a result of Thomas' surgery, he has a small lump on the side of his head which comprises of a pressure valve and reservoir installed just under the skin . He has another small cut on this tummy where they pulled the tubing down into his stomach so that the liquid which drains away from the head can be absorbed back into the body. As long as there are no complications as a result of the operation such as infection or the shunt blocking, Thomas will have the shunt for the rest of his life. The surgeon told us that he installs approx 200 shunts a year into children as a result of brain haemorrhages, illnesses such as meningitis and other problems so it's not as uncommon as you'd think. He will be able to lead a pretty normal life which is good, though we will always have to be on the look out for potential blockages which will require immediate surgery.

Whilst staying at St Georges, we saw lots of small children with much more serious problems such as cancer, leukemia and disability so we have to be thankful that Thomas is back home with us so quickly and hopefully permanently this time.

We have to take Thomas back to St Georges in six weeks time for another scan and we are hoping that they might be able to tell us more about the damage that the brain suffered as a result of the original bleed when he was a day old. We will obviously update you then but in the meantime, here is a picture of Thomas taken a couple of days after the operation.

Quick update from Tooting Broadway

Thomas was admitted to St Georges Hospital, Tooting on Sunday afternoon from St Peters. His head had grown 5.6cm in 16 days and it was concluded that he had fluid on the brain. This is probably as a result of clotting from his brain bleed blocking the ventricles.

On Tuesday morning he was taken into the neuro-theatre and had a shunt fitted. This allows the fluid on the brain to drain through tubing and a value into his abdominal cavity where it is absorbed by the body.

The operation went well and Thomas was in Intensive Care by around 10.30am and back on Ocean Ward by 1.30pm. He is still very drowsy but doing well.

Thanks for all the messages of goodwill from you all, they really help.

Will keep you updated as we can.

Love from CC&T