Hospitals, No Sleep, and Holding It Together : We Didn't Know How Much More We Could Take

As Eira continues to be unsettled—with no answers and no end in sight—we found ourselves back in hospital again. Not just for an afternoon this time. This was a longer stay. 24 to 48 hours of “monitoring and observations,” they said, like that might somehow bring peace of mind.

But deep down? We already knew. This wasn’t a sore throat. This wasn’t a urine infection. We knew it wasn’t. And eventually, even the doctors said the same. But hearing them say it out loud didn’t bring relief—it just confirmed the fear that something else was going on, something they still couldn’t name.

We knew something was off the moment Eira started refusing food. Her feeds dropped to barely her prescribed milk doses—nothing more. Her appetite, which used to be a source of comfort, was disappearing before our eyes. And still, we were met with puzzled faces and vague explanations.

One suggestion, from the neurology team, was that this could be part of her “waking up” phase. Whatever that’s meant to mean. No treatment, no timeline, no steps forward. Just more of the same: waiting, watching, hoping. They increased her medication. That was it.

As the days crawled by, her unsettledness dulled slightly. But the exhaustion—mental, emotional, physical—didn’t. Not knowing how to help your child... that’s the part that crushes you. You spend every waking moment trying to comfort them, but you're doing it in the dark. That helplessness? It eats away at you.

There was a small development: Eira has found her mouth. She sucks on her fingers now for comfort. It’s something so ordinary—so many babies do it. But with her teeth coming in, it’s not so comforting anymore. And now she’s started rubbing her eyes constantly. Is she telling us she’s tired? Are they bothering her? Are they itchy? Sore? We don’t know. And that not-knowing—that’s what breaks us the most.

At the same time, this new movement—the reaching, the touching—while a beautiful sign of her development, comes with new risk. Her NG tube. She’s now so much closer to it, just a few centimetres away from pulling it right out. Something that was never a risk before has become an ever-present one, almost overnight.

Back when we were in hospital, they offered to train us on how to reinsert the tube if it ever came out. We said no—she wasn’t at risk then. But now? That risk feels very real. It feels imminent. So our nights have shifted again. If Eira’s awake, we’re awake. We can’t afford not to be. She needs eyes on her, every single minute. Every tiny hand movement could lead to the tube being yanked out. That’s our new reality.

And that level of care? It’s all-consuming. With Angharad to look after, and normal life trying to carry on in the background, it’s just... exhausting. We're stretched thin. Tired isn’t the word anymore.

Still, we’ve tried to find slivers of light in the chaos. Eira’s growing fast and needed a new wardrobe—so off we went for a trip to Trostre. Just Mammy and Eira. It was supposed to be a moment of normal, a small escape. And in some ways, it was. But even that, even just stepping out, felt like climbing a mountain. Because in the back of your mind, you’re still scanning for risk. Still listening for the sounds of discomfort. Still on edge.

The last week also marked the start of something beautiful amidst the hard: the wave of support that continues to wrap around us. Fundraising events are now in full swing—one nearly every weekend. It started with a Coffee Morning with Kim and a Bake Sale from Eira’s nursery, Andi Pandi’s. Of course, we had to go. To say hello, to say thank you. To eat some cake and breathe in the love that fills that place.

But stepping back into the nursery for the first time since our lives flipped upside down... that was emotional. For us. For the staff. For everyone. The air felt heavy with everything we’ve been through. It was a lot.

Our hope—our constant, stubborn hope—is that Eira settles enough over the next few weeks so we can make it to more of these events. We want to show our face. We want to hug the people showing up for us. We want to say thank you—not just with words, but in person., here's to holding it together.