Surrender ?

Tonight I cracked a bit under the strain of being here day after day and of feeling trapped into procedure after operation after procedure but still being asked to CHOOSE them. So laughable!! We have not been given a choice since day one! Any of us!

I think maybe I need to surrender. Just give Rose over to the experts and focus on helping her at the other end. Let them do their gastrostomy with fundoplication (that’s to deal with the damage the gastrostomy causes to her tummy) and if that doesn’t work or her home C-PAP isn’t enough, tracheostomy. This all seems to be the path towards our fabled homegoing. It’s not forever and she won’t be the first or the last to survive and recover through / by similar procedures.

The problem is I can’t help feeling that a lot of her issues can be resolved with time and growth. My REAL problem here is my ideology, I know. I am trying to apply the same rules I learned during pregnancy and child birth to this very different situation. I am absolutely terrified of unnecessary intervention and it’s consequences. But I can’t tell what is unnecessary.. perhaps if it’s proposed at all then it’s necessary?

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I felt almost sure the gastrostomy was the way to go until the surgeon told me it was likely to cause severe reflux and a fundoplication should be done at the same time to deal with said reflux. Now I feel like we are back at square one but without any alternatives. I’m not sure why this wasn’t raised at our last meeting. It baffles me and makes me feel worn down into the horrible blue green lino covering the floor (bit of bathos there, Mrs Reynolds).

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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3 Responses to Surrender ?

  1. Caroline Parsons says:

    Hon you sound awful. Can I share something that you can take on board or choose to ignore? In my limited experience with children it seems to me that no matter what you do (try and make them clean their teeth, eat their greens, say please and thank you, learn their numbers and the alphabet, crawl, be potty trained etc) in the end they’ll do exactly what they want when they’re ready for it.

    I wonder if you’re not feeling so awful and strained because of the toll of making all these decisions yourself and having to control every aspect of Rose’s life so far. Maybe in fact the universe is already looking after Rose. Maybe it is time to just let other people take the reins, sit back and try to just enjoy your time with Rose without having to make all her decisions. In the end, she’ll do what she’s going to do, whether you try and make her eat broccoli or not.

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    • roseeir says:

      Thanks, Guys. Yeah, sorry!! I was pretty tired last night when I wrote that!!! Thanks for your speedy responses. Feeling less lonely this morning. Meant to be talking to ENT and The Gastrostomy Nurse this morning also one of the NICU nurses is organising for me to meet a mum with a child who has the trifecta (gastrostomy, fundoplication, tracheostomy). Apparently she’s incredible and taking it all in her stride on The Outside so think that’ll be really helpful.

      Sorry again for distressed Post.

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  2. Abi says:

    I share your ideology. And, like you, don’t know if that is helpful or a hindrance in this unique situation. There have been times in life when surrendering has shown me the way and other times where I’ve questioned things to go with my instinct and been SO glad I did. I realise that’s no help at all!! But I am sending courage and trust in your instinct, because that is what it feels like you need most! A xxx

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