One of the highlights of half-term for Jessica and Sophie was our day out at Cliveden with another heart family. Jessica and P first met at the heart ward Christmas party and quickly made friends with each other. They are around the same age as each other (P is a few months younger) and both have similar heart conditions.
With Jessica’s heart condition, the left side of her heart is underdeveloped. With P it is the right side. Both conditions are managed through a series of three surgeries. These replumb the heart to help it work more effectively. The Fontan procedure is the final planned surgery. This is the one that Jessica will need to have in the next year or so.
P had her Fontan at the end of last year. It was interesting to see the difference in energy levels between her and Jessica. What is most noticeable is just how pink P looks compared to Jessica. The Fontan procedure helps to increase the amount of oxygen that the blood is able to pick up. Jessica’s blood oxygen levels run at around 80% which is much lower than normal. This is the reason why she goes so blue. Having to function at lower blood oxygenation levels also affects her energy levels. On the whole, Jessica copes really well but there is a noticeable difference between her and her peers.
It was lovely to see Jessica and Sophie’s look of delight when they first saw P again. The three girls headed off hand-in-hand and made a beeline for the maze. We hadn’t explored the maze before and I think we probably took an interesting route through it but we found the middle and our way out again without too much trouble!
We spent the rest of the morning in the play area where Jessica, Sophie and P had a lot of fun while hubby and I enjoyed chatting to P’s mum and dad. The play area at Cliveden is such a good one – there are lots of things to explore and the seesaw is a nice big one so that several children can go on it at once.
After a break for lunch, we decided to explore some more of the grounds. Jessica wanted to have a ride in P’s buggy. It was a good opportunity for us to try out a disability buggy as we’ve been considering getting one for Jessica. She’s really outgrowing the buggy we’ve had since she was a baby but longer walks can be a struggle for her. We often manage without it if we’re out as a family. A ride on Daddy’s shoulders is usually an option when she is tired. However, if I’m out for the day on my own with the girls, I will often bring it.
Jessica’s exercise tolerance will reduce as she gets closer to needing her next stage surgery. A proper disability buggy designed for an older child would be a better option than trying to manage with the buggy we have now. Plus Sophie can also sit on the footrest and have a ride too!
I think most of the ride in the buggy was due to the novelty factor though! Jessica had enough energy for a paddle in the stream with P and Sophie! She also quite enjoyed pushing P and Sophie around in the buggy too, although did start to tire by the end of our walk.
The girls had a wonderful time with their new friend. We are looking forward to hopefully catching up again at Easter. For us, it was lovely to spend time with another family who understood the journey that we are on. A moment of not being different, not being judged, not needing to explain things. Not to mention getting to see two little miracles enjoying time together just being normal, happy little girls. These are the kinds of days out that make for the most magical memories.