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.

Wednesday 6 June 2012

Nine months old


Jessica is nine months old today!  Her weight is now up to 6090g (13lb 6oz) which is amazing.  It took her three months to get from 11lb to 12lb and she has gone from 12lb to over 13lb in a month.  She is eating solid foods really well now – strawberries and cream has been a favourite lately!  She seems to be breastfeeding better as well and although she is still taking a reasonable amount of top-up by bottle, this is less than it was.


Sleep-wise, things have settled and whilst Jessica still wakes quite early, she is sleeping better during the night and not spending quite as long awake when she does wake for a feed.   She has been enjoying spending lots of time with Nanny although is now going through a phase where at certain times of the day, she will hold out her little arms and cry for “Mum-mum” and only Mummy cuddles will do.  It is lovely to feel her really snuggle into you when she cuddles up now!


We had an audiology appointment last week for a more intense hearing screen (which was advised because Jessica had spent time on PICU being ventilated) and this has shown that she is not responding very well to low-frequency sounds, although her hearing is good in the frequency range for speech.  This is probably due to some fluid in her middle ear and hopefully this will resolve by itself, but we will have another hearing screen again in a few months’ time to recheck this.  We also have an appointment in a couple of weeks’ time regarding Jessica’s lazy eye.

We had our cardiology check-up in Oxford on Friday and the team are happy with Jessica’s heart function and oxygen saturation levels at present.  As Jessica is doing so well, she does not need another check-up for another six weeks which is great.  We are having a few issues with obtaining some of her medication again though and the team are trying to resolve this.

 
 
Jessica is still not quite able to roll or sit up and the community nurse feels that she may benefit from some physiotherapy input regarding this and will discuss this with the paediatrician.  In the meantime, we will be continuing to encourage Jessica to have some more tummy time (she is gradually managing longer periods on her tummy before getting grumpy) and using the Bumbo to help her to sit and strengthen the various muscles needed for this.  She is doing well with her fine motor skills though and signed her first word – ‘milk’ a few days ago – clever girl!

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