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 20 December 2011

Another little trip on the rollercoaster

Jessica had a fairly quiet day for most of yesterday – the team had decided that as she had had a struggle with being off the ventilator the previous day, it was best to keep her on the ventilator for at least another day so that she will hopefully cope better the next time it is removed. She was more awake though and seemed to be quite chilled out about all the tubes, just looking up at us and even managed a couple of half-smiles.

In the evening though, we had another ride on the PICU rollercoaster as Jessica’s oxygen saturation levels were starting to drop again and so she had another chest X-ray and echocardiogram to try and find the cause of this. The chest X-ray showed that her lungs were a little wet so the doctors have increased the dosage of the diuretics to help with this. On the echo, Michael, the registrar, was able to see the flow through the top and middle of the shunt but not at the bottom and although there was still blood flow to the lungs, he suspected a small blood clot. It meant that Jessica was put back on heparin to help break the clot down and the surgical team were informed just in case Jessica’s chest needed to be re-opened in order to remove the clot.

Thankfully, within about half an hour of starting the heparin, Jessica’s oxygen saturations started to come back up again and when the echo was repeated in the morning, there was clear flow through the shunt. The cardiology team were considering whether Jessica needed to go back to theatre today for a cardiac catheter investigation to look more closely at the shunt and check whether there is a clot there but they have now decided that they are happy with the results of the echo for now.

Jessica has also had her central line (one of her IV lines) taken out today so there are a few less tubes coming out of her and the plan is to take her back off the ventilator later today. Hopefully she will cope better with it this time.

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