26th March 2007

I thought I'd post an update as I haven't for a little while. Well, the little man had a clinic appointment today at our local hospital. They were very pleased with him! His weight is now 22lbs; since his operation in January he has put weight on at a faster pace and has moved up a centile on the baby weight chart which is really good news. He is hitting all his development milestones brilliantly and doing everything they expect a 13 month old baby to be doing. Despite him having a cold (he has the snottiest nose ever!) his sats were still 86 and his heart sounds normal, which is great and we are really pleased :-)

Thomas' favourite past times at the moment are eating coal off the fire, taking out the Sky viewing card and spinning CDs across the room but this morning I caught him eating plaster out of the wall - he's found a loose bit behind the radiator and makes a beeline for it hmmmm..... Basically if he's quiet for more than 2 minutes I know he's upto no good!

He is cruising around the furniture and walking happily when gripped to our finger but hasn't quite got the confidence to take the plunge himself yet. I don't think it will be that long though before he's staggering around the place as if he's had a night out on the beer.

Feeding time at the Zoo!

I had to share this photo with you......this is what mealtimes are like at the moment - VERY messy. Thomas certainly likes getting 'into' his food and this is what happens when his favourite meal (cheese and tomato pasta) is for dinner, you can probably imagine the carnage when something less appetising is on the menu :-)

Thomas' First Birthday :-)

Wow what a birthday weekend! We had a really lovely time. On Friday (Thomas' actual birthday) he spent the morning opening and playing with his birthday present which is a Thomas the Tank Engine first train set. It was good fun, although the little man seems to prefer dismantling the track rather than putting it together!

Here's a piccie of him opening up his birthday cards.


Thomas met up with his mate Alex at a soft play centre for lunch, and practised his walking by pushing along one of the baby walkers. Here he is in action.


The rest of his birthday was spent with family and friends, playing with all his new toys. I used to think our house was quite big but that was before Thomas' toys multiplied overnight!

Sunday was party day, we hired a local church hall, a bouncy castle and a ball pit and filled it with all our friends and family. It was a great day and it was really nice to see so many people. A baby's first birthday is always such an event but throw two major heart operations and a cardiac catheter into your first year of being on the planet and it becomes a REALLY special day. Thank you to everyone who came and shared it with us and thank you all for your very generous presents. Thomas is a very lucky little boy. Here's a couple more photo's of the birthday boy.

Post Op Clinic Appointment

Just thought I'd let you all know that Thomas had his post operation clinic appointment today and it went really well!!! His oxygen saturation levels are 86 compared to 72 before his operation, his weight is now 20lb 4.5 oz so he's regained the weight he lost in hospital and added some more so that's really good news. His heart scan went well and showed good heart function so all in all we're really pleased :-) They said the bump that he has got on his scar is fairly common and should disappear as he grows, but if it doesn't he has got to have another operation in a few years anyway so they will see how it is after that one.

WHAT a little superstar we have!!!!!

We're soooo pleased with his progress post his second op. He is just such an amazing little boy and we can't believe he is one year old tomorrow. In fact this time last year I was in throws of labour - ouch!

Reaching his first birthday is such a milestone, when we were diagnosed with his condition back in October 2005 we really daren't think about this day, BUT it is tomorrow, the house is suitably decorated with banners and balloons and it's all systems go for his birthday party on Sunday.

I'll let you know how the birthday weekend goes......

Happy Birthday for tomorrow to our very precious, beautiful little rascal Thomas Peter Hooks!!! Yippee!!
XXXXX

Our Little Star!

Well Thomas is doing really well since he got home from hospital :-) He is crawling around much faster - although he finds the wooden floor a bit of a challenge as it's slippery!. He has started pulling himself up and generally seems to have more energy than before, he still has a little breather now and again but he's doing so well and we are very proud of him. His new tricks are he says 'tock' (as in 'tick tock') when we point to our watch and he looks up when you ask him where his balloon is. How sweet is that!

I am now working on 'Project 1st Birthday party' :-) which is great fun, I just cannot believe our little man will be one year old next friday. He's our little star!

Here's a photo I took of him yesterday. xx

Thomas' First Christmas & Second Operation

Blimey what a few weeks we've had! It all started about 2 weeks before Christmas, the little man got a tummy bug which wasn't pleasant and really unsettled him. Then, just as he'd recovered from that I got tonsilitis, just in time for Christmas. So Thomas' first Christmas wasn't quite as we'd planned but Thomas had a lovely time. He was a bit overwhelmed by all of his presents and was more interested in the wrapping paper ;-) but now he loves playing with all of his new toys (which seem to have taken over our house!). Here's a piccie of him of Christmas day....


Thomas' 2nd Operation
The New Year came and Paul and I really started to think about Thomas' second operation. Up until this point we could easily tell ourselves 'it's next year' and try to put it to the back of our mind. The thought of the op sent both of our stomachs into knots, we couldn't bear the thought of our little rascal having to go through such an ordeal. We were trying to gear ourselves up for 7th Jan, when he would be admitted to hospital, but on Wednesday 3rd I received a phone call from Mr Barron's secretary to say there had been a cancellation so Thomas could have his op the next day if we agreed! My immediate reaction in my head was to say 'No way' but sensibly we knew it was the right thing to do so after running around like headless chickens (and a few tears) we got all our stuff together and off we trotted to Birmingham.

Unfortunately there was no beds available in intensive care so Thomas didn't have his op on 4th Jan or 5th Jan, they let us go home on the friday afternoon for the weekend as there was no point staying in, they only perform emergency ops at the weekend. What a palaver! On Sunday 7th Jan we called the ward to see what the situation was and was told to go back in, Thomas was first on the list for his op the next day, so off we trotted down the M6 again.

So Monday 8th January came and we took Thomas down for his op at about 8.40am. He was all smiles and giggly as we walked him to theatre, we felt awful as we knew what was ahead of him but obviously he was oblivious. It was really really hard for us to hand him over, all sorts of things go through your mind, it's just an impossible situation. But by 12 noon we got the news that the op had gone to plan and the little man was ok - hooray!!!! It was such a massive sense of relief - we felt euphoric :-) We went and visited him in Intensive care about an hour later and again it was really hard to see him on the ventilator hooked up to machines and drips. Although it was when they started bringing him round that was the hardest. He was so fractious and so upset, nothing would comfort him. He had some secretions on his chest so they had to suction him a few times which just looked barbaric. Paul and I really struggled at this point. His blood pressure was a bit high but the docs were still quite pleased with his progress but he was so distressed all evening and it was really upsetting to see him like that.

Since then though the little man has done remarkably well, he came out of intensive care the following day, he was monitored as high dependency for another day and then on the normal ward. We were expecting to come home on Saturday but the little man had a temperature in the morning and so we stayed in another night for observation so we got home Sunday afternoon. There really is no place like home :-)

Thomas has done remarkably well and we are so so proud of him. It makes me burst with pride when he crinkles up his nose and gives me a smile. It will take him a little while to recuperate but he is doing great so far and seems really happy to be home. It's just amazing how far he has come in a week after such a major op, to be honest it blows my mind. He is certainly made of strong stuff. Well done little man! xxx

Here's a photo of him in hospital 4 days after the op (I'll spare you the photo's we took in intensive care)

Thanks to everybody for all your support and for all your text messages - it really does make a difference. Good job I get 500 free texts with my tariff ;-) xxx

Date for next operation

Due to the slightly conflicting information we'd been given I called Mr Barron's secretary (Thomas' surgeon) last Monday to find out where Thomas was on the list. She said he was still down for December but that this would likely slip to the beginning of January but she would talk to Mr Barron and let me know. I didn't hear anything so I called again today and after a bit of negotiation we have been given a date, we'll go in on 7th January and the operation will be done on Monday 8th January. Gulp! We feel sick at the thought of it.

There is still a possibility it might be December but now we have been given a date at least we have something to work towards and we can plan for our little man's first Christmas. What a special Christmas it will be this year!

I know it's going to be incredibly hard to hand Thomas over to have this operation, I would do anything for him not to have to go through it but I know that he has got to and I want him to have it while he's strong and well. We need to hope that his strong willed nature and cheeky personality pull him through again. I'll certainly be focusing on coming out the other side of it and seeing our little man's beaming face light up the room again.

He's a couple of recent photos of him......

Thomas' Out patients Appointment - 24th October

Thomas had a clinic appointment today at the Heart Unit in Birmingham. They checked his oxygen saturation levels and these were 71/72% so they are beginning to drop but this is to expected as he grows. It is normal for babies with single ventricle conditions like Thomas' to be in the 70's, babies without heart problems are nearer to 100%. We asked the registrar whether he could give us an idea of when 'before Christmas' Thomas next op might be and he proceeded to tell us he had checked with Mr Barron's secretary and we are on 'the routine list' and it is likely to be January/February time. This is obviously different to what we were told on 6th Ocotber when we met with the surgeon. We appreciate there may be other babies who's need is greater but equally we don't want Thomas to deteriorate, we want him to be as strong as possible for the operation. It feels like we are being pushed down the list because he is doing well so we have asked the registrar to find out what is going and let us know. Anyway it's great that the little man is doing well so we must try and focus on this but we do feel like life is on hold a bit at the moment.

Thomas started saying 'Da da da da' last week, much to Paul's delight seeing as he has been saying 'Ma ma ma ma' for a few weeks now :-) He's also showing the first signs of being interested in crawling. He wants to be on his tummy and he pulls his knees up so his bottom is in the air. He's already getting frustrated by it though and has got a long way to go yet before he's off....

Here's a piccie of our little rascal......

Meeting with Thomas' surgeon 6th October 2006

We met up with Mr Barron (Thomas' surgeon) and Pauline (our cardiac liasion nurse) last Friday at Birmingham Childrens' Hospital. Mr Barron said the results of Thomas' catheter were as they expected and so he talked us through the next planned operation which is called a cavo-pulmonary shunt. During this operation he will remove the gore-tex tube, that he placed in Thomas' heart during the first operation, and take the upper body vein (the vein that drains the blood from the top half of the body back into the heart) and connect this straight to the pulmonary artery so the blood goes directly to the lungs and by-passes the heart. It's mind boggling isn't it!!!

Mr Barron said the operation is major, it's open heart surgery so Thomas will have to have his chest opened this time and go on a heart and lung machine during the op but the results are generally good and babies are usually in hospital for about a week. BUT, as they always say, every baby is very different and therefore it all depends on how the little fella copes with it all. I'm absolutely dreading it but have every faith in Mr Barron and his team and I know that this is the next stage in Thomas' journey.

Mr B is planning to do the operation before Christmas, which doesn't feel very long away at all, and we should be notified 2-3 weeks before the planned date. We have also agreed to go on the cancellation list meaning we could be in called at short notice - which, to be honest, is probably better so we don't have as much time to think i.e. panic about it.

All in all it was a good meeting - it was good to go and check our understanding of the next operation and gave us a chance to ask all the questions we had looming around in our heads. We just need to hope that our little man can be a star once again and come through with flying colours!

The Great North Run for Little Hearts

Last Sunday (1st October) Paul, his two brothers (Mark & Simon) and our Sister in Law (Rosa) all did the Great North Run to raise money for Little Hearts Matter, the charity that supports families of children born with a single ventricle heart condition.

The sponsorship has gone fantastically well, many of you reading this have dug deep into your pockets and generously sponsored one of the Hooks' runners, and for those of you who haven't ....then shame on you ;-) The total is increasing by the day and with the pound for pound fund matching by Barclays and Royal Bank of Scotland looks to be in excess of £3500. I think you will all agree to raise this amount of money is brilliant and it will make all the difference to Little Hearts.

Tomorrow (6th) will be a year to the date that we were diagnosed with Thomas’ condition, Little Hearts has been an incredible support to us over these last 12 months and I know they will continue to support us and many others for a long time to come.

I am so incredibly proud of the Paul, Simon, Mark and Rosa. To run 13.1 miles (apparantly that 0.1 makes all the difference ;-) is such an achievement and they have shown real commitment to ensure they were physically ready for the big day. All I can say is that Thomas is such a lucky, lucky little boy to have a family like ours.

In other news....We have an appointment tomorrow with Thomas' surgeon at Birmingham Childrens Hospital to discuss his next surgery so I'll update after then.

Mark, Rosa and Simon Hooks, Our little rascal & Daddy Hooks

Thomas' trip to Somerset

Thomas and I have just returned from a few days in Watchet, Somerset with Grandad and Grandma Grice. Daddy has been playing golf!

We had a lovely time and the weather was kind to us. Here's a few piccies of our little man.......

Welcome to Thomas' Blog

Hello everybody welcome to Thomas' Blog!
We thought this was a great idea to keep everybody updated with how the little man is doing. We hope to keep it as upto date as possible so we hope you enjoy reading about what he has been upto. X