Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Saturday, 12 January 2013

Another visit to Wexham Park


We hoped to be able to avoid hospital for a while but Jessica had another trip back to Wexham Park on Tuesday as her sats were on the low side again when the community nurse visited in the morning.  She had been weaned off the salbutamol inhaler a couple of days before but was still a little wheezy and after a couple of puffs of the inhaler, her sats were back up and her chest sounded clear again.  We thought we’d avoided a trip to Wexham Park but the doctors decided that they would like her to come in for a review just to be on the safe side.


Thankfully, after a couple of hours on the children’s assessment unit having her sats monitored and her chest listened to, the doctors were happy that the situation was under control and so we were back home again.  Jessica has been continuing to have the inhaler two or three times a day and the community nurse is due to visit again on Monday to recheck Jessica’s sats.

On the plus side, she is continuing to gain weight beautifully and weighed in at 9070g (19lb 15oz) on Tuesday.   She has become much more confident with standing now and is happily taking little side steps around the lounge holding on to the sofa and any other items of furniture she can pull herself up on!

We have also all been busy rehearsing for our fundraising concert which takes place at Christ Church next week.  Further details of the concert are available here and tickets are available from the church office, with the proceeds being donated to Friends of PICU.  Michael and Louise are both performing in the concert as is Grandma, Great-Auntie Marlene and Jessica’s godfather Bryan, and Grandad is doing the sound so it is a real family affair.

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