Kaitlyn's name written in the sand on a beach in Western Australia by a lovely lady for us. In memory of our precious daughter. http://namesinthesand.blogspot.com/2008/11/kaitlyn-annie-jones.html

Our beautiful brave daughter has gone, she died at 1.45am on 2nd August 2008. We had gone into hospital on Thursday night at very short notice for her operation the next day. The repair to her valve was successful but her heart function was poor afterwards and although she fought hard to stay with us her heart was just not strong enough. They did everything possible to save her. Simon and I were both with her when she passed away and she was very peaceful. The morning of her operation she was all smiles and laughter and that is how we will remember her. She was the perfect daughter and brought us unimagined happiness. The above photo is our favourite and taken on her birthday it captures her sense of fun and joy perfectly. We can't quite believe we will never see her again and we want her back more that anything. I will end this blog with Joshua's words " She was so special to me , I loved her so much"

At Kaitlyn's last check up it was noted that her leaky valve had got worse. After the surgeons had a meeting about it, it was decided that it would be in Kaitlyn's best interests to operate to try and repair the valve. It is important this is done otherwise it would affect Kaitlyn's lung pressures and the overall functioning of her heart. Unfortunately it means another open heart surgery but the surgeon has given us a 95-97% chance of success which we are focusing on. It will not be pleasant for any of us not least of all Kaitlyn ,but we know she is "tough as old boots" - to quote a nurse , and is so much better now than she was when she had her last operation.
We are waiting for a date which could be any day soon as she is top of the urgent list. At the moment Kaitlyn is running around without a care in the world! Here are a few pics that were taken in Grandad's cart yesterday.

Kaitlyn was 2 years old on the 5th June. Can't quite believe that 2 years have passed already but then on the other hand we feel as though Katilyn has been around forever! We had a lovely family tea on the Saturday before at my parents house, where we enjoyed cake and had balloons. We all had a lovely time and the weather was warm enough to sit out. On Kaitlyn's birthday we had planned a day out but Joshua came down with a tummy bug shortly after Kaitlyn had opened her presents so we spent the day at home instead and then went out the following week to a local farm where Kaitlyn got to feed the animals. We also had a lunch for some of Kaitlyn's little "heart" friends, so she has had a busy few days! She is saying more words now and has totally mastered the art of walking. Here are some pics . Another slide show , the first two are ones my brother took at her birthday tea- he takes some amazing photos

Kaitlyn's 2nd Birthday

We spent a wonderful week in Spain. Kaitlyn coped well with the flight and the heat and enjoyed every minute! She especially liked going in the pool and dancing to the live entertainment in the evenings. She wasn't so keen on the local food though and survived the week on fish fingers, pizza and chocolate ice cream:-) Our hotel was very much child-orientated and we spent most of our time there, at the main pool and excellent beach club. Below is a selection of holiday photos.

Slideshow

Kaitlyn has now started to walk by herself! We are very proud of her- she takes great delight in

her new found independence and will regularly give her self a round of applause for her efforts! We had a check up at BCH recently , the plan is to stop one of her medications next month and thereafter reduce another which will leave her with only two lots to take. The planned catheter has been put back again as she is doing really well at present. They may be able to get away with a CT scan which will avoid a general anesthetic so we are keeping our our fingers crossed for that. We have booked a holiday to Spain next month and we are all looking forward to enjoying some sunshine for a change!

Here is a picture of Kaitlyn with her friend Thomas at his 2nd birthday party last week. A good time was had by all and Kaitlyn particularly enjoyed eating her party food! Thomas has a very similar heart condition to Kaitlyn but his problems are on the right side whereas Kaitlyn's are on her left. He only lives a few miles away so it is nice to have another family close by who knows what its like to have a child with heart problems. Kaitlyn also has another friend "Joshua" who is aged 2 and has the same condition as her , again lives only a few miles away , and they say this type of heart problem is rare!

We had a lovely Christmas! We spent the day at my parents with my brother John and his wife Claire. Joshua was so excited when he opened his nintendo wii that he almost couldn't breath! Kaitlyn was in good form having just got rid of a nasty chest infection just in time for Christmas day. It seemed unbelievable that a whole year had passed already. Kaitlyn's next check up is in March. She is still cruising the furniture but not quite walking by herself yet and is totally refusing to speak! oh well am sure she will do things in her own time. Happy New Year!

We attended an outpatient appointment on 29 November 2007. Kaitlyn's heart function was described as good and her leaky valve is no worse than when it was last checked. she is also gaining weight nicely and overall it was a positive appointment. In the last few weeks Kaitlyn has had a chest infection but luckily she responded well to antibiotics and is fine again now. She is also standing better and can walk along the sofa holding on ! We can now hopefully look forward to a happy Christmas at home!

Simon ran a 10k race on 14 October 2007 for Little Hearts Matter. This is the charity for Kaitlyn's heart condition, it offers information and support for families. Jeremy Weston (Josh's Godfather) also ran.It was a chilly but fine day with a very good turn out. Apparently it was a "tough" course with a hill to climb! Both ran brilliantly and finished safely. Here is a pic of them with Kaitlyn before the start. The other pic is of Rachel Robinson whose son Samuel also has hlhs and is a month younger than Kaitlyn. She ran the 15k well done to Rachel! I may be tempted to have a go myself next year........

Kaitlyn had a check up at BCH on 9th August 2007, her consultant was happy with her heart function. They were unable to check her sats as she gets so upset when anyone "medical" comes near her , she definitely hasnt forgotten any of her hospital experiences yet! The original plan was to have another cardiac catheter towards the end of this year but as she is doing so well the plan now is to delay this until next spring. That is great news as we were dreading being back in hospital around Christmas time again. She is now crawling and exploring everything , she is generally a happy baby enjoying life to the full. Her next check up is in November.

We spent Kaitlyn's first holiday in Kent. We went for a week in August and it rained everyday expect one! I even had the heating on in our 200 year old cottage as the temperatures were nearer to October than the summer. We managed to spend an hour on the beach! Also visited Howletts Animal Park and various indoor play areas which both Josh and Kaitlyn enjoyed.We have decided to go abroad next year.

Kaitlyn turned one on 5th June 2007 - we had a lovely day opening presents and had a small family tea. It was quite emotional thinking back 12 months and remembering all the highs and lows. It certainly has been an eventful year and we hope that the next 12 months will be a little more "boring"! There is a lot to be said for the quiet life. There were a few times when we didn't think Kaitlyn would see this day but she has and we are very grateful for that and every day we have together. Happy Birthday to our special little girl and here's to many more to come! xx

On the 2nd June 2007 we had a very special day for Kaitlyn. A service was held for her

at our local church - this was the christening we had hoped for her rather than the bedside baptism that she had in November. We had a perfect sunny day with over 80 of our family and friends in attendance. Thank you to all for making it a day we will never forget. Kaitlyn was a little overwhelmed by the occasion and didnt manage her usual smile for the camera!

Kaitlyn went into bch as planned on 22nd February 2007 for her cardiac catheter op. For once she behaved herself and we were home on schedule after 3 days! The procedure took 2 hours and Kaitlyn was fine afterwards. Her heart function was discribed as "excellent". We were told that there was no need to inflate the second vein or the aortic arch as neither were blocked. Her second vein is on the small side as are her lung arteries. We have to hope that over time her arteries will grow sufficiently for her to be able to have her third stage operation when she is about 5years old, having said that we are told there are children in their teens who have not had the op and have remained well.
More good news is that Kaitlyn no longer has to have her clexane injections or weekly blood tests and is back on asprin which is brilliant ! We have an out patient appointment in May and the plan is to do another catheter in 9-12 months time.
The only problem now is teething!! Kaitlyn has one tooth coming through with another following - she is such a grumpy so and so at the moment - but we dont mind! :-)

Catherter op postponed!

We went into hospital as planned in January. All the prep was done and Kaitlyn was nil by mouth waiting to be taken to theatre when the consultant decided that as Kaitlyn was still testing positive for MRSA that the risk of the infection getting into her blood stream was not worth it and they would cancel until she was clear. As Kaitlyn is well there is no immediate rush and so the new date has been schduled for 21st February.

In the meantime we have been enjoying being at home ,we recently bought a new high chair and this pic is of Kaitlyn eating breakfast - although she is not sitting up yet she still managed to remain upright in her chair.

HAPPY TO BE HOME !!!