Kaitlyn's News

Simon Jones is fundraising for Birmingham Children's Hospital Charities

2010-09-15T14:26:00.000+01:00

Simon Jones is fundraising for Birmingham Children's Hospital Charities

2008-11-10T18:42:00.003Z

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

2008-08-05T13:07:00.002+01:00

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"

2008-07-25T16:15:00.001+01:00

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.

2008-06-13T17:41:00.001+01:00

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

2008-06-13T17:39:00.001+01:00

2008-05-18T15:44:00.002+01:00

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.

2008-05-18T15:40:00.002+01:00

Slideshow

2008-04-11T16:48:00.003+01:00

2008-03-27T11:45:00.000Z

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!

2008-02-07T10:54:00.000Z

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!

2008-01-14T12:08:00.000Z

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!

2007-12-02T10:45:00.000Z

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!

2007-10-19T09:24:00.000+01:00

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........

2007-10-08T10:54:00.000+01:00

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.

2007-10-08T10:49:00.000+01:00

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.

2007-07-21T10:57:00.000+01:00

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

2007-07-11T14:18:00.000+01:00

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!

2007-03-16T10:41:00.000Z

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! :-)

2007-02-02T11:19:00.000Z

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.

2007-01-08T09:52:00.000Z

HAPPY TO BE HOME !!!

2007-01-06T16:31:00.000Z

CHRISTMAS DAY IN HOSPITAL! WE MADE THE MOST OF IT.

Thank you Joshua for making this the best Christmas ever - he didn't complain once and was as good as gold! We couldn't wish for a better son .

2007-01-06T16:20:00.000Z

Kaitlyn's Operation

Kaitlyn's operation went ahead as planned on the 22 November 2006 , we spent an anxious 6 hours waiting and were very relieved when we were told Kaitlyn had made it through. The heart surgeon Tim Jones spoke to us about her second vein which he had connected ,was on the narrow side and time would tell whether this was going to affect things. We went on to ITU and saw Kaitlyn who looked awful - she was pale and very blue - her figures were not great and she needed further blood transfusions but the next night they made the decision to bring her off the ventilator. I left her that night with some trepidation as she didnt look great and wasnt that comfortable breathing. The following morning I had a call to say she was in difficulties and they were putting her back on ventilation , by the time I had run over to ITU Kaitlyn had already had a cardiac arrest and they were struggling to re ventilate her - it was a dreadful time while I waited near her bed for news , Simon was on his way from work and I was told Kaitlyn would have to go back into theatre as they did not know why she had become so ill - we were told that she might not make it - I arranged for the vicar to be there to perform a baptism. Caroline Jones and Craig Poole were her Godparents and managed to attend her bedside. After a lovely service Kaitlyn was taken to theatre, another 4 hour wait and we were given the news she had been stable throughout. Her ventilation was changed together with some of her medications and she began to improve. The next 2 weeks saw some rocky times with Kaitlyn still very ill at times but still fighting.

Thankfully she was back on the ward after a traumatic few weeks on ITU , however there was more to come as it quickly became apparent that Kaitlyn was suffering badly from morphine withdrawal symptoms. She was not able to sleep for 3 nights, restless and at times hallucinating. Even being cuddled brought no relief for her , it was very tough to see her suffer. Over the next few weeks she was weaned off the morphine and became more like her usual self.

She improved to such an extent that we were told she would be discharged after the weekend however when her sats were checked they were found to be low and she needed oxygen. A scan revealed that her heart function was not as good as before and she was transferred back to high dependency and onto intravenous drugs to improve the heart function. She was all smiles still and enjoyed being sat up in her cot so she could watch what was going on!

Another few weeks saw Kaitlyn improving and coming off her oxygen and onto different medications. We then had the news that Kaitlyn's wound swabs had shown that she had contracted MRSA , she would need antibiotics! It just seemed like one thing after another and she didnt deserve all these set backs. Luckily it didn't seem to set her back and we started to have some home leaves, these went well so we were eventually discharged after a long 7 weeks! Kaitlyn is having treatment for the MRSA which has spread to her nose and skin.

Thankfully she is feeding well, enjoying her milk and solids more than before. Next will be a cardiac catheter on 23 rd January which will hopefully improve the blood supply to her lungs by inflating the narrow vein. WE are taking each day as it comes and thoroughly enjoying our time at home as a family .

2006-11-10T10:45:00.000Z

OPERATION DATE

Kaitlyn is due to have her next open heart surgery on 22 november 2006 , we shall go into hosptial the day before. We have been told that babies usually recover quicker from this operation and that we should expect a stay in hosptial of about 7-10 days . We just hope Kaitlyn behaves herself so that we can all be home for Christmas! We are absolutely dreading this but we know that Kaitlyn will not live without it. She has now started on solids and is loving my cooking ! Hopefully the fact that she is doing well and gaining weight will give her the best chance of getting through this next operation. Wish us luck!!

2006-10-23T08:16:00.000+01:00

Clever Girl!!!

Kaitlyn was taking about two thirds from her bottle and the rest down the tube so on 6th October we were able to take the tube out and give her a chance to cope without it. She gradually built up her daily amount - unfortunately got a bad dose of acid reflux which didnt help but after her meds were increased she settled down. since then she has not looked back and is doing really well with out that wretched tube! Although on some days it takes 9 bottles over the 24 hour period so sleepless nights again!

We had a meeting with her heart surgeon Mr Barron on Friday and things look good for her next operation , even though she has two veins to connect rather than one and she has a leaky valve!!

The other day Kaitlyn had her first proper laugh - she found Joshua's karate kicks very entertaining ""

2006-09-18T10:37:00.000+01:00

Protective Big Brother

2006-09-17T11:42:00.000+01:00

Home Again!

2006-09-17T11:15:00.000+01:00

Kaitlyn Has Had Her Cardiac Catheter!

We went into BCh on6th September 2006 slightly nervous! Kaitlyn had her catheter on 7th September - it was hard taking her down to theatre again and being with her while she was put to sleep - she was all smiles to begin with then started to cry- although we were told it would be about 2 hours we ended up waiting 4 hours again we were so worried something had gone wrong but thankfully she was ok - we were told that the catheter had gone well , the aortic arch had been blocked so they had cleared it by a balloon technique and her veins all looked good - she does had a leaky value which they will keep an eye on. Unfortunately they couldn 't find a pulse in Kaitlyn's leg so they had to start her on Heprin over night and then on some very strong clot busting drugs the next day - thankfully the leg returned to normal but it really made Kaitlyn ill again and she was back on HDU - since we have been home she has gradually improved although her feeding is not as good as before and it looks like this wreched NG tube is staying put a while longer!! Now we are waiting for news of when her second stage operation will be,,

2006-08-16T20:27:00.000+01:00

Me and My brave girl!

Kaitlyn is now 10 weeks old, we went for a check up last week to Birmingham and things are all ok. She has to have a cardiac catheter on 5/6th Sept which is where they check the pressures and functioning of the heart more closely- after that her second operation will be scheduled - prob dec/jan time . We are so grateful to all at BCH for all they have done and continue to do for Kaitlyn - Mr Barron (heart surgeon) especially.

We would also like to thank all those who gave their support to us when we were in hosptial - even those we have not yet met!there were so many people praying for Kaitlyn it was amazing - it means so much to have this support and we know it will be there for us again ,,, thank you,,,

2006-08-16T20:23:00.000+01:00

Kaitlyn without her NG tube!!!

"It's easy to pull this tube out when you know how""

Unfortunately Kaitlyn is determined to pull her tube out at every opportunity which means a trip back to hopsital to have it replaced - she now has to have the scratch mits on full time!!

2006-08-16T20:19:00.000+01:00

Having a nap on daddy!

Kaitlyn sleeps through the night and we have to wake her for her feed. Let's hope the good sleep routine continues!

2006-08-16T20:14:00.000+01:00

Joshua loves to feed Kaitlyn!

What we didnt envisage was the fact Kaitlyn would experience some problems with feeding. ALthough she would take some by bottle it was not enough and so she has come home with her feeding tube still in place. This has been quite traumatic to cope with but as time has gone on we are more confident with it. We hope it won't have to stay in for too much longer but that depends on Kaitlyn!

2006-08-16T20:10:00.000+01:00

Out of hospital and visiting grandad and grandma!

After another few weeks on the ward Kaitlyn finally came home. It felt like we had been in hospital for ever.

2006-08-16T20:02:00.000+01:00

The Proud Grandma!

Nothing prepares you for the experience of a children's intensive care unit. After her operation Kaitlyn was paralized for 3 days as her chest was left open to allow the swelling on her heart to reduce. It was after they had closed her up that they spotted the blood clot. That night she became very unwell and we thought we had lost her- she pulled through and kept on fighting. She also had a partially collapsed lung due to all the fluid retention she had built up. The picture above is of Kaitlyn a few days before she came off the ventilator and back to the ward. We could not bring ourselves to take photos of her before then although we know a lot of people do but we didnt want to remember those days when she was so ill.

2006-08-12T15:43:00.000+01:00

Kaitlyn After her operation.

Kaitlyn had open heart surgery at 3 days old. The operation was supposed to last 6-7 hours but took 9 hours - the waiting was agony! she slowly recoverd but then had to have further open heart surgery a week later to remove a blood clot. She spent 2 weeks on intensive care.

2006-08-12T15:40:00.000+01:00

Kaitlyn and her big brother Joshua at BCH before her operation.

2006-08-12T15:31:00.000+01:00

Our daughter Kaitlyn Annie was born on 5th june 2006 at 2.48am. We knew antenatally that Kaitlyn was going to be born with a serious heart defect namely hypoplastic left heart syndrome. This basically meant that the left side of her heart would not be big enough to do its job properly. She will need 3 operations and then her heart will never be "normal"

I gave birth naturally with only gas and air. Kaitlyn was like any other new born , crying and pink , you would never know to look at her that there was anything wrong. She was whisked away to SCBU and the same day transferred to Birmingham children's hospital. We were elated and thoughts of the impending operation were put to the back of our minds....

We have created this site so that family, friends and many well wishers can keep up to date with how Kaitlyn is progressing.