Last week we nervously headed back to the Evelina Children’s Hospital for the Jam’s first post-Fontan cardiac check-up. Although he seems well to us – more energy, better colour – it’s still frightening to contemplate what they might find under the surface (literally).
As it turns out, he’s doing better than we ever dared hope. His oxygen saturations are 93%, which is 10% higher than before the operation (and much closer to a ‘normal’ person’s 99%). His cardiologist (Dr M.) was pleased with what he saw on the echocardiogram too. He described the Jam’s result as “a good Fontan”, which basically means he has a good pump (his single ventricle), unobstructed pulmonary arteries and little or no leakage from the valves. He can fly long-haul; he can learn to swim; he can run around without getting breathless (as he’s repeatedly demonstrated over the last few weeks). When I asked about the future Dr M. reminded us that some of the earliest recipients of this procedure are now in their thirties and used the phrase “normal life”, which is not something we’ve ever heard before in relation to the Jam’s CHD.
After everything we’ve been through over the last four years, I’m not sure I can remember how to live a normal life. I guess now is the time to start figuring it out…
One is for book group, so that’s okay…
I’m making steady progress through my reading list for this year. I’ve finished two books and am nearing the end of the third, but I need to read five books every four months to get through all 20 and that doesn’t take into account reading anything that’s not on the list…like the ones I couldn’t resist buying today.
From my 2014 book destash list I’ve read:
6. A Study in Scarlet by Sir Arthur Conan Doyle (The first Sherlock Holmes story and one of only four full length novels. Despite a unexpectedly detailed aside explaining Mormon history, I really enjoyed it and I definitely want to read more of the original stories.)
9. The Carrier by Sophie Hannah (A modern crime novel and very different from the Conan Doyle. I initially found the sheer number of characters confusing, but once I’d figured out who knew who and how, I was hooked. Although I guessed whodunnit, the motive and the twists involving other character were still surprising. I later found that it was part of a series and some of the characters would have been familiar to me if I’d read the earlier books.)
1. Life After Life by Kate Atkinson (2013 Costa Winner and short-listed for the 2013 Women’s Prize – deservingly I think. I will write a proper review of this wonderful novel when I’ve read the last few pages).
First sunny day in a while
First trip to the park post-op
First flowers of the year
Perhaps not the most obvious choice for Valentine’s Day, but I had a great time with my two favourite boys. Here’s my attempt at a three-picture story, as suggested in this week’s WordPress photo challenge:
Establishing shot – the world
Relationship – learning with Daddy
Detail – look at that smile
Those photos are just a glimpse of what you can get up to at the Maritime Museum, without paying for any of the special galleries or exhibitions. There’s a giant map which you can walk (or crawl) on and they provide some large model ships (and a submarine) for kids to push around as they explore. In the Children’s Gallery you can practise Morse code with flashes or clicks, fire a cannon – the cannon is real but the firing is virtual – or take control of the cargo loading. Just outside there’s a phone to communicate with the captain from the engine room (or vice-versa) and a ship simulator where you can attempt to navigate into port. (In term-time these parts of the museum are sometimes closed for pre-booked school visits, so check availability if they’re the main attraction.) The are also a lot of non-interactive exhibits, which the Jam quite liked but are more suitable for older children and adults.
Getting there – If you’re visiting on a weekday, there is a car park almost immediately across the road from the museum on the corner of Park Row. Another option would be to park at the Blackheath end of Greenwich Park and take a stroll down the hill through the park. Both car parks get very busy at the weekend but Greenwich is easily accessible by train or DLR and the stations are within 10 minutes walk of the museum.
Other facilities – The museum has good access for a pushchair and there are various buggy parks dotted around neat the interactive exhibits. The toilets have baby-changing facilities and there is a large cafe and a coffee bar onsite as well as the very nice Brasserie (which also has a children’s menu).
(For more of our adventures, click on ‘The London List’ at the top of the page.)
Somebody’s feeling better (and Iron Man has a special heart too)
It seems that everyone I know must have cold hands, which would explain the number of requests I’ve had to knit gloves / mittens / armwarmers recently. I’m always happy to knit somebody else is paying for the yarn (and new needles) and the first two pairs kept my fingers occupied while I was sitting by the Jam’s bed in the hospital.
1. Black Magic Gauntlets for our FFF. She asked for these to keep her hands and arms warm under a coat with ¾ length sleeves. The (terrible, taken at the hospital) photo doesn’t show it because of the colour, but they are the same pattern as my Raspberry Gauntlets. (Click here for the Ravelry pattern page.)
2. Silver Cupcake Mitts. Made these for a friend of SiL’s. It’s a lovely little pattern and when she wore them I immediately got a request for a second pair for her friend’s daughter. (Ravelry page.)
3. Spring Green Armwarmers for SiL. These are my WiP at the moment. I’ve finished one and am about to cast on the second. They’re part of her Christmas present and she found the pattern (which was actually called Snow on the Laurel) on Pinterest, but luckily it was linked to a Ravelry page.
4. Purple Cable Mittens #2 for another friend of SiL’s. I’ve already made one pair of these but the pattern is good TV knitting and I need to keep practising the thumbs! (Ravelry page.)
Once I’ve finished these I plan to move on to feet – baby booties and socks!
Important information for all parents-to-be. It seems appropriate to share this in CHD awareness week. The image doesn’t seen to be appearing here so please follow the ‘view original’ link.
Originally posted on adventuresfromtheheart:
We count ourselves so very lucky that Erin’s complex heart defect was picked up at a 20 week scan.
In fact, only around 35% of CHDs are picked up by scans. Many little undiagnosed babies are born and become suddenly poorly – resulting in an emergency situation.
Do you know anyone who is expecting a baby soon? Please share this image with them – it highlights some key signs of CHD in newborns. Please don’t think it can’t happen to you… CHDs affect 1 baby in every 100!
For more information please visit http://www.charliejonesfoundation.org.uk
It’s amazing what you can do with just four ingredients – puff pastry (ready-rolled found at the back of the fridge and approaching its BB date), an egg, a jar of Nutella and some parmesan cheese. I also had two very simple recipes – cheese straws and chocolate puff pots – and one little helper.
Chocolate Puff Pots
The Jam’s cheese swirl