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!!

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 ""

Protective Big Brother

Home Again!

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,,

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,,,

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!!

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!

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!

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.

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.

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.

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

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.