Eira’s Gastrostomy Journey: A New Chapter

This week marked another big step in Eira’s journey, as she went back into hospital to have her gastrostomy fitted.

For a long time, Eira has been fed and medicated with the help of her NG tube. It has played such an important role in keeping her safe, supported and growing, but it has also brought many difficult moments. The tube on her face, the tape on her skin, the times she pulled it out and it had to be replaced, the worry, the tears, and the constant reminder that feeding has not been simple for her.

So, although the decision to move to a gastrostomy was not an easy one, it felt like the next step forward.

Back in hospital

Taking Eira back into hospital is never easy. No matter how prepared you try to be, there is always that familiar heaviness that comes with walking back through those doors.

This time, Eira needed to have anaesthetic for the procedure. Seeing your child go through that is incredibly hard. There is the waiting, the worry, and the feeling of having to be brave for them, even when you feel anything but brave inside.

But, once again, Eira showed us just how strong she is.

She was in hospital for just over 24 hours and, thankfully, made a speedy recovery after the anaesthetic. It was a huge relief to see her coming round, resting, and beginning to get back to herself so quickly.

Saying goodbye to the NG tube

One of the biggest emotional parts of this change has been saying goodbye to the NG tube.

In many ways, it has been something we wanted to move on from. It meant no more tube across her cheek, no more tape on her face, no more replacing it when it came out, and no more seeing her beautiful little face covered by something medical.

For the first time in a long time, we could see Eira’s face again properly.

That moment was emotional. After everything she has been through, seeing her without the NG tube felt like a glimpse of something new. A little bit of normality. A little bit of freedom. A little bit more of Eira.

But it is also complicated, because while the NG tube has gone, the challenges have not disappeared. They have simply changed.

A new button and new challenges

Eira now has a gastrostomy button (Mic-Key Button), which means her feeds can go directly into her tummy. This will hopefully make things easier for her in many ways, but it also brings a whole new routine for us to learn.

There is a six-week healing process ahead, and with that comes care, caution and adjustment.

We are learning how to look after the site, how to keep it clean, how to manage meds in a different way, and how to spot anything that does not seem right. It is a lot to take in, especially while also trying to keep things as normal and calm as possible for Eira & Angharad.

There are also the emotional challenges. A gastrostomy is a big change. It is a visible reminder that Eira’s journey is still not straightforward, and that medicine remains a significant part of her care.

But it is also a step that should help her. It is a step made with love, with hope, and with the belief that this will support her in the best way possible.

Brave, as always

Eira has taken it all in her exo-skeleton stride.

Just over 24 hours in hospital, anaesthetic, surgery, recovery, and now a whole new way of doing things — and still she continues to amaze us.

She has already shown so much strength in such a short time. We know the next few weeks may not always be easy, but we also know how far she has come.

The NG tube helped her when she needed it. The gastrostomy now begins a new chapter.

A chapter with healing, learning, new challenges, and hopefully more comfort for Eira.

As always, we are incredibly proud of her.

Our brave girl.
Our little fighter.
Our Eira.