Concerts and counting down to Christmas

We have had a very busy couple of weeks in the run-up to Christmas – attending Christmas parties, meeting up with family and taking part in a fundraising concert in aid of Friends of PICU.  The concert on 14th December was on the second anniversary of Jessica’s Norwood procedure and it was wonderful to see Jessica having a little dance on the stage during the final number and reflect on how far she has come.  This time two years ago, Jessica was in intensive care and about to spend her first Christmas in hospital and now she is a very active and happy little girl, enjoying being a big sister and bringing so much joy into our lives.  Thank you to everyone who attended the concert and helped us to raise £400 for Friends of PICU.  It was particularly lovely to be able to catch up with one of the other heart families who we got to know during one of Jessica’s stays on Ocean Ward at the concert as well.  

We saw a few more heart families from Ocean Ward the following day when we attended the Families of Ocean Ward Christmas party.  Jessica really enjoyed herself at the party, particularly the bouncy castle and the soft play area.  She wasn’t too sure about meeting Father Christmas although the present met with full approval!  

We have been catching up with friends and family in the run-up to Christmas – Jessica’s cousins Clare, Seren and Siân were visiting from Luxembourg and it was lovely to see the girls together again having not seen them for over a year.  We also had another visit to see Nanny and Jessica got to catch up with her aunties, uncles and cousins.  Unfortunately, whilst at Nanny’s, Jessica fell over and caught her face on a chair resulting in a black eye – poor little love.  It is starting to look much better now thankfully.

Dr Archer has now confirmed that the plan for the new year is for Jessica to have another cardiac catheter investigation to look at her lung arteries – we do not have a date yet for this but will keep you updated.

In the meantime, we would like to wish you all a very Merry Christmas and peace and blessings for the year ahead.

A day at Downing Street

We have all had a wonderful day today attending a children’s party at 10 Downing Street.  Jessica was invited to the party through the Alexander Devine Children’s Hospice charity (our wonderful community nurse is an Alexander nurse).   Naturally Mummy and Daddy were a lot more excited about going to Downing Street than either Jessica or Sophie but Jessica certainly enjoyed herself very much at the party.  She got to meet Dick and Dom, had her photo taken by a photographer from Woman magazine, met some of the remaining dancers from Strictly Come Dancing and the Prime Minister and then got to see Father Christmas and get a little present from him.  She had great fun wandering around with bunches of balloons and the hat off one of the polystyrene snowmen which were decorating one of the rooms.  It has been an amazing experience for us all and Jessica was quite tired out by the end and was asleep in her buggy before we got back to Westminster tube station. 

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.

Becoming a big sister

Jessica is now a big sister!  Baby Sophie Elizabeth was born in the pool at home this morning and weighed in at 8lb 10.5oz – a whole 3lb heavier than Jessica was when she was born.  Jessica was three months old before she reached her little sister’s birth weight.  Jessica came to meet her new sister within minutes of Sophie’s arrival and was utterly fascinated by the new baby – she kept saying ‘baby’ over and over again and wanted to give Sophie kisses and cuddles.  

She has had a little cuddle with her baby sister and was very pleased with her present from her baby sister – a dolly in a Moses basket with clothes and accessories.  She has also enjoyed playing with Nanny who came down to look after Jessica whilst Sophie was on the way.

Sophie’s arrival has been well-timed from Jessica’s perspective – she managed to go to all her regular groups last week and it is now half-term so we can all have a week at home without Jessica missing out on any of her usual activities.  Jessica has been doing well over the last week – she has started putting words together so we get ‘bye-bye Mummy’, ‘bye-bye Daddy’, ‘no more’ and things like that which is delightful.  She has also discovered the word ‘no’ which seems to have become a bit of a favourite (from her perspective but perhaps not from Mummy and Daddy’s!)

A trip to A&E

We had a little trip to Wexham Park Hospital today after Jessica tripped over in the park and fell flat on her face, resulting in a nasty looking cut on the inside of her lip.  One of the things we worry about with something like this is the risk of Jessica getting endocarditis (an infection in her heart) and so we called the cardiac liaison nurse at Oxford to check whether we should be concerned.  She felt that it would be best to get it checked out as it might also need stitches.  Although we have open access to the children’s ward, the team there advised us to go to A&E instead and so our little trip to the park turned into a trip to A&E!  Thankfully, the cut doesn’t appear to require stitches and the doctors don’t feel that Jessica needs antibiotics although have advised us to go back if Jessica does show any sign of fever or infection.  In the meantime, she has a very bruised little lip but other than the initial upset when she first fell over, doesn’t appear too bothered, thankfully.  Hopefully it will heal well without any further concerns.

Other than our trip to A&E, life has been fairly quiet over the last week or so as we await Pod’s imminent arrival and make the most of still being able to give Jessica lots of one-to-one attention before she becomes a big sister.  She has been going to all her usual groups and enjoying herself, continuing to be a very happy little girl as always!

Two year review

Jessica had her two year review with the health visitors today and they were very happy with her progress. Although some of her developmental milestones were reached a little later than usual, she seems to have caught up very well with other children of her age and is doing pretty much everything that is expected of her which is very good.   Her speaking vocabulary is slightly less than expected but as she is learning new words rapidly and her hearing appears to be absolutely fine, this is not a cause for concern. Her signing vocabulary is quite extensive now anyway and she certainly has no problem communicating with us using a combination of speaking and signing. One of her new words since our last update is ‘mummy’ (instead of her usual ‘mum-‘mum’) which is so wonderful to hear. ‘Daddy’ has been attempted a couple of times but she still prefers ‘Da!’ at the moment.

Jessica has been weighed today and is gaining weight beautifully – up to 11.8kg today (25lb 15oz) which is very encouraging particularly with her having a little bit of a picky eating phase lately. We have learned that these phases are usually very short-lived anyway particularly if we don’t make any fuss about them.

Jessica took another little step in showing what a big girl she is becoming when she used the potty for the very first time the other day. She isn’t yet at the stage of telling us regularly when she needs a nappy change (although has done so once or twice) so we are not trying to actively potty-train just yet (particularly with Pod’s arrival being fairly imminent!) but we have just been sitting her on it for a moment before her bath-time just to get her used to it.  She also showed what a big girl she is when she recently had a haircut and sat still on the stool all by herself without having to be held on Mummy's lap.

Auntie Maxine came to stay for a couple of days last week and Jessica loved spending time with her. We also had a day trip to Liverpool to keep Daddy company as he had to set up some equipment for an event there and Jessica enjoyed having a walk around Albert Dock with Mummy while Daddy was busy working. She loves to walk as much as possible now and has started to object to being put in her pushchair. She is certainly a very active toddler now and although she does occasionally get a little breathless after a while, she is generally coping very well with being constantly on the move.