Its all go, today

Today is going to be interesting. Firstly, we were work at 7-30 by the builders, who we had expected at 8-30, and now they're removing chunks of the house in an attempt to renovate the nursery, landing, stairs & hall. The cat thinks that this is a sign of the end times, and has taken to hiding underneath the sofa, ears flattened back, tail all twitchy at every lump, bump and thump as plaster comes down.

I suppose that this is a theraputic event, in that we've got to get through it; life, after all, goes on, and, if I dont want to end up with a destroyed house, I'm going to have to remain on top of this and provide constructive input etc.

This morning, at 10, we have to head back to the hospital for our first consultation with the cardiologist about Caitlins condition - hopefully we will get a better idea of how serious her condition is - albeit on a scale ranging from 'bad' to 'terrible' - though we remain cautiously optimistic. Yesterday we were at the midwifes, where we had another ultrasound scan and she was checked out (yet again) pretty thoroughly - no indicators were seen of obvious other defects, though the real crunch will come after she's born. In addition, C has found several blogs of parents whose children have this condition, and have a relatively normal life (by which I mean they need medicines every day & the teachers need to know their conditions, but aside from that, not much else). One of the main issues is that, if everything goes well, we will have a relatively normal child with slightly reduced cardiovascular output, who will find it hard to eat enough calories. I guess that our this means that our plan to rear a chocoholic who is excused games, and yet never puts on weight has succeeded beyond our wildest expectations, so I call that a result.

Despite the first tentative signs of whimsey in my posting, the atmosphere here is still fairly febrile due to the nature of the situation. Both C & I occasionally lapse into tears when confronted with the thought of loosing her, though perversely, its the stories of hope that cause the most problems. Still, we mustn't loose sight of the fact that there is hope - it all comes down, at this point, to whether her chromosomal scan is clean, and also her will to live.

Lets keep on hoping.

S

Back from the cardiologist...

Its qualified good news - Caitlin has a really messed up heart, but its not classic hypoplastic left heart syndrome (HLHS) - the left hand side is hypoplastic in nature (ie undergrown), but she has a good aortic arch, which is one of the most serious elements of HLHS that requires the most invasive of procedures.

As a result, (subject to confirmatory scans etc later on), she doesn't have to go through the Norwood operation, which is the first & riskiest of the treatments that would ordinarily be required. Insead, a much smaller & simpler operation is needed to stabilise her, which is fantasticaly good news & dramatically improves her chances, both of survival and recovery.

In addition, the cardiologist is confident that, whilst she will have to have a 1-stroke heart, rather than the traditional 2-stroke version, she is expected to have a good length & quality of life, with an initial estimation of 40+ years, which, whilst lower than 4-score & ten is within the parameters of (say) someone who is a heavy smoker. Of course, these are all preliminary findings & things might go wrong, but its the first element of good news that we've had for a while.

There remain, however, potential problems. Firstly, her pulmonary artery is very very small (which is a bad thing) whilst her pulmonary veins are arranged in a really odd manner - so much so that the cardiologist isn't even 100% that she has actually identified the pulmonary veins. These are extremely serious issues that, if confirmed, would reduce her prognosis, and, in addition, there is an odd growth in the heart where the pulmonary veins should reconnect - which doesn't seem to do anything. Whether this is a problem in the longer term is uncertain, but the fact that it is there is... unusual. Hopefully these will grow & resolve themselves, so fingers crossed, but, y'know, its still a concern.

So there we are. Its not all puppies & sunshine, but we've been told that there's a very good chance that Caitlin will survive the operation and make a full recovery to a level that is indistinguishable from a normal child, though with some limits. Mind you, I suspect that the 'limits' might be more mental than physical, as our consultant has a former patient who routinely cycles 10 kilometers to school (and back) each day. Oddly enough, she's finding it a bit challenging - but she can do it.

Mind you, I'm not sure that *I* could cycle 20 km each day, though!

S