I’m sorry, for those of you following me for plus size fashion and art, this is a departure. Some of you have followed me a while though and will know a little about my daughter, born 10 weeks premature, 6 weeks in SCBU, has had a few health issues since.
What only a select few of you know is that I’ve been accused of being neglectful of her health. I wasn’t going to post about this yet, for fear of what I write being used against me, but keeping it locked up inside is tearing me apart.
Trigger warnings as there are going to be some distressing images of a premature baby in here.
My daughter is this incredible little girl, she’s clever and funny and full of mischief. She loves giving kisses and cuddling her big brother. Developmentally you would not know she’s a preemie.
Physically though, she is tiny. She’s 20 months chronologically, 18 months corrected, and still fits into clothes age 6-9 months. You can see her ribs and she’s never really had that adorable baby chubbiness.
From her birth right up until her first birthday she vomited almost constantly, and we fought and fought to get her help. We were dismissed so many times, told it was just reflux and that she’d grow out of it, we tried all the reflux medications, the thickeners for her formula, you name it we tried it. She was already on special formula due to being prem, but she just couldn’t keep it down. We even tried weaning early. Eventually she got admitted to hospital with failure to thrive and finally we were taken seriously, she was taken off formula entirely, she had to be given drink in very small amounts and fed a special medicated porridge like food while on a milk free diet. And her weight started to improve, it was gradual, but it was happening.
Eventually she started to refuse the porridge like food though, being much keener on food she could chew and/or feed herself with. She’d turn away or just spit it straight back out. But she ate loads of everything else. She frequently finishes her meal and then eats a second helping, plus helping herself to her brother’s food. It’s always amusing to see people’s reactions when this tiny little thing manages to fit quite so much food in to her little body!
Still she struggles to gain weight.
So we’ve been referred to social services. Because people suspect we haven’t been feeding her.
One of the bits of feedback we’ve had is that I do not show enough concern for her health. I do not appear sufficiently upset.
So let’s get some perspective shall we?
My daughter is a cheerful, cheeky, intelligent and affectionate child. She is full of smiles and laughter. Her speech is progressing well, better than her brothers at the same age. She’s hitting all her milestones. She eats well, no mealtime battles with this little one. She sleeps through, though does tend to refuse sleep until late.
One year ago she screamed constantly, only stopping screaming to sleep or vomit, and she did more of the latter. She was going blue randomly.
Nearly two years ago she looked like this.
She weight 3lb 1oz, was jaundiced, almost fitted into the palm of my hand, couldn’t breath for herself, her heart occasionally slowed, and she had to have pre-digested food through a tube straight into her stomach.
Am I falling over myself with worry now?
No, because right now she is in a better physical condition than she has ever been. Yes I am still worried, of course I am, I’d rather she was as healthy as she possibly could be. But we’ve been through hell with her, and this is the easiest it’s ever been. I’m also aware that she is one of the luckier ones, there are many babies born later than her with far more problems.
How dare they sit in judgement.
And this is without all the other issues they’ve not taken into account, like the fact they are judging me based on the few times they’ve seen me face to face. All of those times I have been with my children, my son still asks if his sister is going back into hospital. What kind of mum would I be if I were to stand in front of my son and talk openly about how scared I am for his sister? He doesn’t need to hear that, he’s three, it’s been traumatic enough for him already.
I still have flashbacks to her birth, to the sound of the alarms in the SCBU, to the sight of her flesh turning grey when her heart rate dropped.
This part is a walk in the damned park.