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.

Tuesday, 2 October 2012

Ballooning blood vessels



We are back on Ocean Ward again – Jessica has had her cardiac catheter procedure and all has gone well.  All the nurses on the ward have commented on how much Jessica has grown since we were last here (five months ago – what a lovely long time we have had at home between hospital stays!) and how well Jessica looks.  She has been such a brave girl throughout the whole thing – other than being a bit unhappy about having bloods taken yesterday (not a fun process in spite of the magic cream) and feeling quite sorry for herself after coming out of theatre today (not too surprising!) she has mostly been her usual happy self.  Now that she is a big girl, she even has a sticker chart which is gradually filling up due to all the different tests that she has needed to undergo.


Other than all the tests needed in preparation for today’s catheter, Jessica spent yesterday quite happily playing with toys on a floor mat near her cot and giving all the nurses and Sue, the chaplain, big smiles when they came in.  We were second on the list this morning although were a little later getting to theatre than anticipated so lots of distraction was needed to take Jessica’s mind off the fact that she was not able to have any breakfast.


The catheter was being performed by Dr Wilson (the doctor who did Jessica’s very first operation before she was born).  It was a long wait whilst Jessica was in theatre – four hours in total, mostly due to the fact that there were difficulties getting the catheter into the veins, particularly the veins in Jessica’s neck which means that she now looks a little like she has been attacked by vampires, bless her!  There was some narrowing in her pulmonary arteries and aorta which has been ballooned and this should help improve the blood flow in these areas.  Jessica was a little bit wheezy when she first came out of theatre as she has a little bit of a cold but this improved soon after she arrived back on the ward.

 
Jessica has been recovering well – within minutes of getting back to the ward, she made it clear that she was hungry and then proceeded to make up for the missed feeds by having a lovely long feed from Mummy followed by a big bottle of Infatrini!  She got another certificate for being a brave girl and has mostly spent the evening snuggling up to Mummy and Daddy as she is understandably not quite as happy as she was this morning!  She has needed a little bit of oxygen to help boost her saturation levels whilst she is recovering but hopefully by morning she will be back to just breathing air again. 


Thank you to everyone for keeping us in your thoughts and prayers – hopefully all being well, we will be able to go home again tomorrow.

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