Weighty worries

Jessica’s oxygen sats and weight are checked regularly at home by our community nurse.  Over the last couple of visits, we have noticed that Jessica is not really gaining weight and her current weight is much the same as it was at the end of last year, which has prompted a referral to the dietitian.  We were hoping that looking at the bigger picture at Jessica’s cardiac check-up (and comparing her weight across the appointments which are more spaced out than the community nurse visits) would reassure us, but Jessica’s weight today is less than at her previous appointment (and is the same as the one before that, back in November last year).  

We have, however, been reassured that this is quite a common concern in cardiac children and that hopefully with some extra dietary fortification, Jessica will start to gain weight again.  We have always been aware of the fact that she does need more calories than other children her size because her heart has to work harder and have always used full-fat milk, butter and cheese to help with this but will be trying harder to add those extra calories in where we can! 

On the plus side though, Jessica seems to be doing well heart-wise – she has plenty of energy, and her sats today were within her usual limits.  She is getting taller and seems well in herself which is all reassuring.  

Ideally the team would like her to be around 18kg when her next surgery takes place – with her weight staying around the 15.2kg mark at the moment, there is still quite a way to go on that front! It will be good to speak to the dietitian and have a plan in place for helping Jessica get there.

Weighty worries aside, we are enjoying the start of the summer. Jessica’s last week of preschool was quite an emotional time (mostly for Louise!) and we are hoping the summer doesn’t go by too quickly before Jessica starts school in September.  We have been planning our family challenge for this year – travelling from Land’s End to John O’Groats by public transport which we will be taking on around the middle of next month.  We are hoping to raise money for Little Hearts Matter through taking on the challenge and have set up a fundraising page – if you would like to support a charity which is very close to our hearts and sponsor us for our challenge, that would be lovely!   We will let you know how we get on with it! 

A weight lifted

Last week we had a letter from Jessica’s cardiology team informing us that they had discussed the results of the cardiac catheter and were not planning her next stage surgery for another year or two.  It feels like a weight has suddenly been lifted off our shoulders and we can now look forward to the summer without the fear of the next surgery hanging over us.  

It’s been a busy month since the catheter took place.  We had a lovely week away at Butlins in Minehead which the girls enjoyed very much and it was lovely to see how Jessica has suddenly become more confident in the swimming pool.  We’ve had day trips to Legoland and Beale Park, been to see In the Night Garden Live, watched Jessica taking part in her preschool sports’ day and her Girls’ Brigade company display, and celebrated the fifth anniversary of the in-utero surgery which gave us that glimmer of hope back when I was pregnant with Jessica.  How amazing it is to be five years on from that point and to see Jessica doing so well!

We’ve had a couple of hospital appointments this month.  Jessica had a referral to the audiology team as we had some concerns over her hearing.  She has been diagnosed with glue ear.  Thankfully at present, it isn’t having enough of an impact on her hearing to need any further treatment but will be checked again in a few months’ time.  Jessica also had her regular eye check-up and her vision is still good with her glasses so just another check-up needed at the end of the year.

Jessica is now in her last two weeks of her time at preschool (sob!) and has been visiting her new infant school. She is very excited about the prospect of starting school (especially as her best friend is in the same class) and her new teacher seems very nice.  We’re in the process of putting health care plans together ready for the start of school and making sure that we give as much information as we can about Jessica’s heart condition and how it affects her day-to-day.  Her preschool have been excellent with regards to this and our conversations with school have been reassuring so far on this front too.  In the meantime though, we’ll been making the most of the summer before our big girl takes her next big step into the wider world.