Big Sister

Back to some normality today – being woken up by my daughter, watching the Disney channel and her request to “go for coffee” (despite her not actually drinking coffee, she goes for the sugary snacks).

I worry about how I’ll explain all this to her. For now I have decided that there is no point saying anything to her until we actually know what is happening. But how do you explain this to someone so young? I envisage another session of trawling the web looking for advice on how to deal with these situations.

She is excited to see Bump. She will be the best big sister. She is so loving. She has already reeled off a list of things that she’s going to do for him – feed him, play with him, help him read. She has drawn the line at changing nappies though, she said she’s leaving that to us.

Hope she gets to do them all xxImage

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I wore a track suit today, and I’m not even going to apologise for it :-)

Today feels like it has been a tough day. The whole not knowing what to do with ourselves I think. We have left the house (we’ve not turned into complete hermits), but everything just seems weird. This probably doesn’t make any sense.

I’ve been scouring the web again, trying to find more information or just someone that can help share what we’re going through but to no avail. I’ve written to a couple of organisations this evening asking if they have any information and if they will help promote the blog, but I don’t expect to hear from them. They probably get hundreds of messages off people like me.

And, worst of all, I spent the day in a track suit. I don’t think I’ve ever done that. Not even a good track suit, an absolute rubbish one.

Neurosurgeon Meeting

Yesterday afternoon was sh*t – apologies for swearing.

When you go into a meeting with four medical staff and it starts with “what was your understanding from our meeting on Monday?” and “what are your views on termination?” then you get the feeling it doesn’t bode well for what’s about to be said.

Our answers were that we understood our baby had a possible midline arachnoid cyst on his brain and, with regards to termination, it wasn’t something we wanted to consider unless the level of disability was going to be extreme/severe and would mean a very poor quality of life.

The conversation that followed has just left us feeling more confused/angry/upset but, most of all, still not knowing. Basically, our baby will definitely have some form of disability – but we’d prepared ourselves for that. In fact, we prepared ourselves to go there and be given information that would make us think it’d be crueller to give birth to Bump than keep him, and anything they said that suggested otherwise we would take as a positive.

We were told that where the cyst is (it is definitely what I’ve stated above), they just don’t see many babies with it. They therefore don’t have a huge amount of information to work with. It all just depends on how big the cyst grows and how the brain develops in the next few weeks. As it has been such a short space of time between discovering it and seeing the neurosurgeon, they have not been able to determine the rate at which the cyst is growing. It is also too early to tell to what degree it is effecting the growth of the brain. So we have to go back in just over two weeks to have another ultrasound, and possibly a further MRI after that.

The worst case scenario for our baby is that the cyst grows to an extent that the two sides of the brain are pushed so far apart it will not develop. Meaning he will not develop neurologically in any way – no seeing/hearing/moving around unaided – nothing. There is even a possibility of death not long after birth.

They can’t try to drain the cyst intrauterine because there is a large blood vessel that runs over the cyst and it would just be too dangerous.

Hopefully, Bump’s cyst won’t grow that rapidly and he’ll have some form of quality of life.

So at the moment we’re still in the “not knowing” stage and we hate it but we’ll get through it.

The staff at the hospital have been lovely. Matter of fact, but still lovely. I’m glad we have them monitoring Bump.

Neurosurgeon Day

The day has finally arrived when we meet with the neurosurgeon. Lot of mixed feelings about it – nervousness but also a feeling that we’ll be able to get some sort of perspective about things, start making plans, and, hopefully, at least try to enjoy the rest of the pregnancy.

We’ve thought of 26 questions to ask her so far. So I hope she hasn’t got plans for the evening. I shall be there with my pad and pen, writing everything down like a journalist. Maybe I should take a dictaphone?!

It’s a horrible unknown at the moment. Don’t really know what to do. We bought bump some clothes (he’ll be one dapper little boy) the other day in a bid to try and do something “normal” and we’ve been looking at prams. I still don’t feel right buying stuff though and I can’t get excited yet, I feel like I may jinx it.

Fingers crossed that today will help with that.