Cardiac check-ups and Christmas parties

 

Jessica had her cardiac check-up at Oxford yesterday and on the whole, she is doing very well. Her sats were a little on the low side when they were first checked (around 72) but then when they were rechecked after her echo were back up to the usual low 80s which was reassuring. Her heart function looks good but the team were unable to get good views of her left pulmonary artery. They are not concerned about this as Jessica appears to be well at the moment, with reasonable colour and plenty of energy but they want to have a better idea of how well her pulmonary arteries are growing before they start thinking about her Fontan and so they are considering how best to get the information they need. It may be that they can check the pulmonary arteries through doing a CT scan or perhaps Jessica will need to have a cardiac catheter early in the new year. We will keep you updated when we know more about what the plan will be.

 Jessica is gaining weight well – she weighed in at 11.7kg (25lb 12oz) yesterday. Her cough seems to be much better now as well and she has been her usual happy self over the last couple of weeks. She is sleeping much better now and is enjoying being a big sister – Sophie gets a lot of love from her big sister and Jessica likes to try and play with her. The other day she was holding Sophie’s hands and guiding her through the actions to ‘Wind The Bobbin Up’ (very gently!) which was just delightful to watch. She is getting much more imaginative with her playtime now and it is lovely to watch her pretending things – using wooden puzzle pieces as a phone, making her ‘In The Night Garden’ figures ‘talk’ to each other, cooking things on her toy stove and telling us they are ‘hot’ – so lovely to watch.

We have had a lovely day today at the Friends of PICU Christmas party (Sophie’s first ever party) and Jessica enjoyed herself very much. It is lovely to see how much more she enjoyed it this year – she really took an interest in what the children’s entertainer was doing and did some dancing and thoroughly enjoyed seeing Ellie the elephant and Father Christmas. Sophie, on the other hand, slept through it all!

We have another Christmas party to go to in a couple of weeks’ time (the Families of Ocean Ward party) and Jessica will also be taking part in our fundraising concert for Friends of PICU – ‘Spirit of Christmas’ which we will be performing at Christ Church in Uxbridge on Saturday 14th December. More details are available here if you are interested in coming along. Sophie will also be making her stage debut in this concert!

Adjusting

Jessica seems to be adjusting very well to being a big sister. Most of the time, she just wants to give baby 'Sofa' (as Jessica calls her) lots of cuddles and kisses and share toys with her (which Sophie is not always very appreciative of as Jessica can be a little too enthusiastic with her loving and we have to remind her to be gentle!) There are of course times when Jessica struggles a bit with having to share Mummy and Daddy's attention - she has had a few clingy moments, and a couple of night wakings where she gets very upset and needs lots of cuddles to help her settle down again. Saying 'no' to her is a huge tragedy at the moment and often results in big tears but these are all things we were expecting and so lots of cuddles and patience are needed whilst she adjusts to this huge change in her life. These moments are generally short-lived and her reaction to Sophie has been very affectionate on the whole so Jessica really is coping quite well with it all.

 

We had a check-up with the community nurse today and Jessica’s sats are stable, staying at around 80. She has had a bit of a cough and a cold recently and has needed to have a couple of puffs from her salbutamol inhaler just before bedtime just to ease the rattliness in her chest but thankfully this is now improving. Jessica’s weight today was 11.27kg and so she seems to have lost weight since her 2 year review but as her last weight was taken when she was fully clothed and she still is following the 25th centile line nicely on the growth chart, it is possible that the last weight was not quite so accurate and so this is not a cause for concern.

Jessica is really learning lots of new skills at the moment – she has mastered most of her wooden puzzles and is starting to put jigsaws together, she can count from 1 to 10 (although usually misses out 1 and 7 and most of the time just counts from 2 to 6!) and is getting very good at building towers with her wooden blocks. She can be very particular about where things go when putting things away and if she spots something has been put in the ‘wrong’ place, she soon moves it back to where it should go! Jessica has also learned how to use the remote control for the TV and has managed to turn it on and find a channel with cartoons (we are not sure this is a good thing!)

We have a couple of check-ups coming up later this month – Jessica has an appointment with the eye clinic next week and then will be having her heart check-up at Oxford towards the end of the month and we will update again after these appointments and let you know how she is getting on.