Solid

If you know your baby has a medical condition which means you can’t give them too much food, you just wouldn’t - would you?

It was an anathema to me. How could anyone ignore all the advice and allow a child with Prader-Willi Syndrome to have a diet that wasn’t healthy enough, or restricted enough? Especially as a baby. I mean, come on, who’s in charge here?

Looking back, I can remember my certainty. These people were wrong. I wasn't like them. I vowed not make the same mistake. 

And then came the moment that I realised how easily it could happen.

When my daughter was a baby she couldn’t feed. Initially, in hospital, we had to use a nose-tube. Then came the long, long days and nights of bottle-feeding and trying to get the spindly-legged scrap of a girl to drink more than a few millilitres of milk. (I wrote about it in an earlier post - Alarm).

At four months old, we tried her on solid food for the first time. The usual home-made vegetable or fruit purees you spend ages making as first-time mum, and which you are always slightly disappointed by when they all turn out to look like vomit. We propped up her floppy body at an appropriate angle. We loaded up her tiny plastic spoon with squidge and got shovelling.

She loved it. It was so much easier for her to eat from the spoon than to suck from the bottle. She somehow ended up with puree up her nose, in her ears, and even on her feet, but it was the first ‘feed’ time ever that had been a pleasure and not a struggle. 

For the very first time I felt I had been able to provide her with the sustenance she needed, and it was a good, good feeling. 

This was when I knew. Because it had been so hard up to that point, because this new method of food delivery looked like it was going to be a barnstorming success, and because it felt so nurturing, it was incredibly tempting to give her some more. 

Video is Squeeze - Tempted

Numbers

I found this in a box in my attic yesterday.

It’s a little black book. No, not that sort of little black book. 

This dusty-smelling tome is from another life. On each page are rows of numbers, painstakingly recorded and incongruously neat.

This little black book is my daughter’s feeding record from when she was just a few weeks old, which I started to keep after her hospital feeding tube had been removed. 

Each day, as I struggled to get her to drink her milk from a bottle, I noted down the amount she managed at each feed. At the bottom of each page is the total, plus information on what times of day she was ‘active’. (As a weak and floppy baby with Prader-Willi Syndrome, ‘active’ is a relative term).

Leafing through the pages now, I can remember my whole world revolving around these numbers. They became a stark measure of my parenting skills. I was carrying out an Ofsted on myself as a mother and provider of sustenance. And a lot of the time I felt like I was 'failing'.

The book finishes when she was four months old, when bottle was swapped for spoon and milk for food. This was when our frail baby began to find things easier. And when I first felt that maybe I wasn't going to be put on 'special measures'. I might be up to the job, after all.


Of course, nowadays, there'd be an app for this.

Video is Stephen Malkmus - Black Book

Alarm

There aren't too many new parents who have to set their alarm clocks to wake up their baby. And it's rare you'll find someone who'll try any trick going to keep the little bugger awake at 2am. But that's what we had to do.

My baby daughter couldn’t cry. Having Prader-Willi Syndrome meant she was hypotonic. Although this sounds like the name of a new sports drink, it just means that she had very weak muscle tone. So she couldn’t cry. 

She also couldn’t suck, so she had to be tube-fed for the first month of her life. Imagine sticking a straw up your nose and squirting your cup of tea through it. A bit like that.

When she could feed by herself, it took ages, I mean AGES, to get just a few millilitres of milk down her, despite trying every special bottle and teat known to man. The effort required caused her to fall asleep, exhausted, before she’d finished.

So every four hours, I’d set the alarm, stagger sleepily into her room, pick her up, switch all the lights on, dance about, take her sleepsuit off and put it back on again, do Scooby-Doo impressions, tickle her, stick on some music, pogo, chat, wave, gurn, bounce, jiggle, jog and do the twist.

All this to wake her, get her feeding, and keep her up long enough to get the sustenance she needed. All this for a child who we would later try to stop eating too much.

Video is The Everly Brothers - Wake Up Little Susie