Three years on from the Norwood

Three years ago Jessica had her Norwood procedure, a long anxious day for us with a very scary hiccup at the end of the day when Jessica had to have her chest re-opened on PICU. Looking at our beautiful little girl now and seeing how happy and active she is, we realise again just how thankful we are to Mr Haw and his team for all they did that day.

The festive season is here again and we have been to our first party of the year - the Families of Ocean Ward Christmas party. Jessica had a wonderful time and it was the first party where she really interacted with the other children which was lovely to see. Sophie too enjoyed herself at first but then became unwell towards the end of the party and we had a week of her being very unwell. Thankfully so far other than one evening of being poorly, Jessica has been fine (if it was the flu as Louise suspected then hopefully the flu jab will have protected Jessica from it). Whatever it was, it certainly knocked Sophie for six so fingers crossed Jessica stays well.

After a couple of years of having a smooth ride with regards to obtaining Jessica's meds, we have encountered a problem with getting captopril as when we went to the village pharmacy with the repeat prescription, we found they were out of stock of the dose we need and there is a supply issue with the manufacturer and no-one knows when this will be resolved. We have managed to find a small supply at a larger pharmacy nearby which will keep us going until after Christmas but then will need to try and find more elsewhere or an alternative if the issue is still ongoing.

On a more positive note, Jessica is continuing to do well. We have visited her preschool again to hand in her health forms and she was happy just to run in and play so hopefully will enjoy it. Can't believe she will be starting next month!  Her community nurse checks show that Jessica's sats are still in the mid 80s and she is gaining weight well.  Now that the cold weather is here, there are more moments of her looking a bit blue but she tends to pink up well once she has warmed up again.

Jessica features on the 2015 calendar for the Charlie Jones Foundation to help raise awareness of hypoplastic left heart syndrome.  The calendar features photos of children who have HLHS or have gained their angel wings as a result of HLHS and Jessica is one of the May children (along with baby Charlie Jones).   The calendars cost £5 each so if you haven’t got your 2015 calendar yet and would like one featuring lots of amazing heart warriors, you can buy one here! Jessica's photo also features on the Tiny TickersChristmas newsletter this month too.