Monday, 26 May 2014

Battling to wean a tube fed baby in NZ

So here we are. Baby A is nearly 5 months old - 10 weeks corrected- and still dependent on her tube. 

A has been fed by an NG tube since she was born 10 weeks early, and has taken some milk orally, with tube top ups since about 6 weeks old.

Most babies, with no other medical issues like A, would not need the tube by now. However A, for whatever reason, has become somewhat dependent on it.

Recently a nurse said 'oh she might get the hang of bottle feeding when she starts solids.' When they said that a big red light went off in my head. Oh! I realised the nurses actually have no clue when she will get her act together, they are just making stuff up and hoping for the best!!

It was at this point I knew I needed to start advocating for my baby. I joined an NZ Tube facebook group and have met lots of lovely parents of tubie kids. I've had such great advice from them which has really helped.

The sad reality is that there is no real tube weaning scheme in New Zealand- many parents end up forking out thousands to go to overseas weaning centres, or to get professionals here. The professionals here are much more likely to 'wait and see' resulting in 1, 2 and 3 year olds (and on!) being dependent on tubes. Many do have medical reasons, yes, but some do not.

As such, parents really have to advocate for themselves and to instigate a wean, often against medical advice.

I started researching and learned that young babies learn eating habits that are hard to break. The earlier we wean her, the better for her growth, for her feeding, for her physical and mental development. 

In saying that, A is very small for her age, and so we can't risk the high weight loss that a wean brings. It's such a delicate balancing act, and I don't know which side we fall on.

Which brings me to today.

Today in the meeting with the homecare nurse and the dietician I laid out my thoughts. No more the placid mother, I am now the lioness mother roaring that something needs to be done to help us! Homecare said - 'oh yes, your speech language therapist (they help with feeding issues) referral should have been done months ago- opps.'
GRRR was my reply.

Homecare said- 'Sometimes it takes the parents to fight before we can really get things moving'
GRRRR was my reply.

I cried in the appointment. Really the stress and the worry- am I harming A, am I doing this all wrong?? - just got to me in that moment. My mother love, and feeling of helplessness came pouring out.

It is so hard having an issue with your child where  there is not enough medical support or knowledge. Parents are expected to learn and know it all. But how can we?? We have never studied at medical school, we are not experts. It's so stressful to have to fight for something when you are not sure what the right thing is.

So. We are moving forward. I have insisted that a firm plan needs to be made for her feeding. No more wait and see. And so the appointments are coming together and a plan will be put in place.

I will let you know how it goes.

(This is an awesome campaign group. We need help with our tubie kids in NZ. Please consider liking this page and supporting the campaign.)

(And yes I know my last post was all about accepting A where she is at. And I am a lot more positive than I was then. But things have changed and now is the time to fight for her, and the time to move forward.)

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