Blog Daisy Nelle

Tubes & Baby Steps

I haven’t written on here in so very long. I find it hard. Not least because of time – why does it go so fast when you want it to slow down, and so slow when you want it to speed up? But also because I don’t enjoy writing as much at the moment.

I sit down. I try and start. And then I feel exhausted only a paragraph in. Like I do now, I suppose. Filming is a little easier, because it’s almost like having a friend to talk to and I just open my mouth and the words come, if a little awkwardly. But writing is my most favourite thing in the world. And it seems I can only really write if my heart is in it.

And that’s not always the case right now.


My heart is very preoccupied with my children.

But I want to write because I am scared that I will look back in the years to come and see a huge chunk of our lives missing. In the tougher times, at hospital, sometimes I would look back at my old posts, and watch our old weekend videos that I used to make. And they gave me a lot of comfort.

And the past few months have been this empty void. I’ve barely committed anything to this online diary of mine and I feel sad about that. And guilty. Because Daisy might look back on this one day and wonder why her mother didn’t write about her. But then, as I spoke to her cleft nurse earlier, about something else, along a similar vein, she replied: “But you had no choice, so you can’t feel guilty about that.” And actually – she’s right. But I still feel guilty. Because I’m a mum. And we do that very well.

I’m sat in a pair of leggings – the comfiest ones I own, a size too big. I’m wearing a long vest top, and a baggy t-shirt over the top. And my hair is still damp and twisted into a dollop onto of my head, just like it was when I refitted Daisy’s NPA earlier. My hands are dry from washing them so much, and washing bottles and syringes, and sanitising with that sticky gel. I can really notice it when I type, but I don’t want to waste this time to write.

Bill is beside me, watching the iPad and eating his lunch. And Daisy is fast asleep. Really, I should be resting. And relaxing. I think I got something around three to four hours’ sleep last night, and for the last few nights actually.

Daisy hasn’t been well. It’s only a cold. And that’s frustrating in itself. Because your baby gets a cold, you cuddle them, give them Calpol and plenty of TLC. But with Daisy, I was frightened.

I think I am more overprotective and paranoid about her anyway. But she really seemed to struggle. And I would have to suction her breathing tube every hour, as opposed to a few times a day, in case it blocked up with mucous and she struggled to breathe.

What was worse is that her monitor kept going off and her oxygen saturation levels were borderline too low. And I suddenly became obsessed with numbers, positions to lie her in and suction. I felt claustrophobic, stressed, anxious and terrified.

But all warranted. I’ve not lost the plot. I would rather err on the side of caution than be complacent and risk something happening to her.

And it’s hard to be this middle ground of mother and carer. Because you can’t approach care rationally, as your heart is so involved. I spend every moment of the day thinking of what she might need next. And whether she is okay. And I sometimes forget to just enjoy my daughter.

At the start of the week, I had never felt less sure and less certain of my role as a mother. I felt very out of my depth. The week before was a whirlwind of appointments. And then this quieter week that I was looking forward to, ended up being one that made me question myself a lot.

When Daisy started feeling unwell, I started worrying. I kept thinking – what if this is the situation that would have meant a tracheostomy would have been a sensible precaution. What if something happens to her and she stops breathing? What if I can’t save her? What if? What. If.

Daisy is absolutely fine to be at home. Or, let’s face it, she wouldn’t be. But I have worried and I kept doubting that I was the best thing for her. Every morning, Mark would leave. And I’d be so tired that my body felt hungover. That’s the only way to describe it. And I’d start the routine. And I’d try really hard. But I would be so obsessed with how she was coping that I’ve just watched the week fall away into almost nothing now.

On Tuesday, her feeding tube blocked halfway through a feed. And our hospital won’t teach us how to fit one, despite it being the norm elsewhere in the UK. And so Mark had to drive to hospital with Daisy, while I stayed with a sleeping Bill. They flushed it clean and reinserted it. He drove home. And it was still blocked. So back they went. By the time she came home, she had missed half a feed, and was late for her next one. She was tired, uncomfortable, and that was when I really started to worry.

I stayed up until around 1:00am, trying to make sure she was settled and safe. And I was up most of the night checking on her.

But babies are stronger and more resilient than I will ever give them credit for. And today she started to perk up.

She was due a visit from our amazing cleft nurse, Dianne, and we were going to trial her without her NPA (breathing tube) for an hour or so. And see how she does. I’d already written this off as something that wasn’t going to happen. Because of how she’d been.

But Dianne appeared and slowly my confidence started flooding back in. She thought Daisy looked brilliant considering. She was managing well. And I was managing well. And it was then that I realised that, actually, could we be doing okay?

Dianne encouraged me to remove her tube, and said that leaving it until next week won’t make me feel any less nervous. And so, with shaky hands, the tube was taken away. And for the first time in a very long time, I was able to stare intently at my daughter’s face. I watched her smile. I saw the real soft curve of her cheeks. I watched her thrive. I watched her be happy. She was doing brilliantly.

We weighed her, and she’s gained more weight. She’s now 11lb 12oz, which has made me so happy as that’s my milk doing that. Which makes the times where I am attached to a pump in the middle of the night worthwhile.

The tube had to go back in. Of course. But this is the thing – now, every day, we will take it out for an hour or so. Building it up over the next few weeks. All day. Overnight. A sleep study at hospital. And then gone. For good.

It may only be a couple of weeks. A lifetime of being able to stare at my baby daughter’s beautiful face. As it grows and changes and develops. And remains one of my most favourite faces of all time.

I remember when her NPA was first fitted. She was only a few days old. And I remember her screaming with the discomfort and the shock of it.

I saw this curved clear tube, with the blue spine and the numbers trailing up it. And I never thought I would be able to pass it myself. I wasn’t a professional. I’m just her mother. How do I do this?

And now I’ve done it so many times that I don’t even flinch. And I don’t know whether that makes me brave and strong, or heartbreakingly desensitised to parts of our situation?

It’s been so long with her NPA in, that I don’t remember another face – a Daisy without one. Her face has always come with tapes and tubes to me. And while i long for the day that they are no longer needed. I also feel strange imagining my baby daughter’s face to be anything different now.

But I am so excited. Mainly because I know that, when her NPA is finally removed for good, it’s not just that she will be free of tubes and tapes, and irritation. But it means she will be stable.

She will be okay. She will keep growing. She will thrive. I can start to relax. Her care will lessen. My anxieties will lessen.

And we can work on the next challenge – her nasogastric feeding tube.

But there’s no rush.

These are baby steps.

But they feel so momentous when I can still feel, hear, and smell the special care wards. And I could be right back there in my mind in an instant.

We are leaving the past behind. But also appreciating the brilliant moments within it.

We are moving forwards.

And Daisy, we are so proud of you.

Daisy’s Two Month Update:

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