“No,” she smiled.
Mr and I high fived with teary smiles.
Blue had been premature and done his first poo before he was fully out and had inhaled it. Blue had been a very poorly chap. No balloons on the door or head wetting, just a vigil around an incubator. Some weeks later Blue was fine and at home being cooed over like the perfect miracle he was. We didn’t realise then that the ‘no poo’ was the start of our C.F journey.
By Monday I knew we had a problem. Pinkie hadn’t done so much as a cat fart when all the other babies were producing marmite type gank. A senior mid wife agreed with me and as Mr waited for the ‘come and pick us up call’ we headed to the Special Care Unit instead.
Meconium Ileus (MI) is a condition where the content of the baby's bowel (meconium) is extremely sticky and causes the bowel to be blocked at birth. In most cases the bowel itself is complete and intact but it is just the inside that is blocked.
In some cases there has been a twist of the bowel before birth, which has caused the bowel to be blind ending (an atresia). Most babies with meconium ileus (90%) have Cystic Fibrosis (CF) and it is this that has caused the sticky meconium. Meconium ileus is a rare condition affecting only 1 in 25,000 babies.
Early October Pinkie’s surgeon asked me what I wanted for Christmas, without hesitation I replied;
“Her poo bag gone.”
The bag had been a constant source of distress as it leaked so often, meaning that I had to change it. The area that had leaked was normally a tiny section, but the acid that was in the poo burnt Pinkie’s skin so the whole bag had to be removed and replaced immediately. The area that leaked was the only bit of the bag that was ready to come off, the rest could have been stuck there with ‘no more nails’ such was the adhesion. I was always in turmoil about the state of Pinkie’s skin, the acid that burnt and made her sore, or the removal of the bag that took skin off and bled, only to have poo acid added to it later. Unbelievable, Pinkie didn’t seem to find her tummy area painful, unlike me who found it to be excruciating. There was many a night time bath (no bubbles or niceness as any grease added to her skin would have made adhesion even less successful), just a warm splash around to rinse off the leakage. I tried everything, an earsick with a smidgen of anti perspirant, medical tapes of every kind ever made, every stoma glue or powder, a kiss and a prayer — nothing made the blasted thing stay on for more than a few hours. The only plusses were that Pinkie was so tiny she wasn’t on the move, it wasn’t forever and she wouldn’t remember it.
“Not a problem,” smiled the surgeon, “we will get you a date, around the first week of November and we will reverse the stomas. Pinkie will cope well I’m sure as she is very well.”
“How dangerous is it?” I asked.
“No surgery is without risk,” he began “ intensive care for a few days….”
I had stopped listening, who willingly puts their baby into intensive care?
Over the following weeks as we waited for Pinkie’s surgery date to arrive I lost weight, slept little and brewed myself into a, medical term, Proper Tizz.
“The bag’s not that bad,” I would often say to Mr, but at night as I pulled more skin off and dabbed at her sore tummy I knew it was.
The big day arrived and I had bad vibes. The nurse showed us to our bed and it was too near the communal bin for my liking, I didn’t say anything, it just added to my unease. Our favourite nurse wasn’t on duty and after all the build up I had packed badly for myself and was already too hot with nothing cooler to change into.
“Oh dear, oh,” said the nurse who was booking us in. “Pinkie has a bit of a temperature, we won’t be able to proceed.”
“Oh no,” I smiled trying to dig up one ounce of disappointment, “what a shame.”
I more or less skipped to the car with Pinkie glued to my lips as I kissed her forehead in sync with my steps.
Blue has had more than his share of operations and Pinkie had hers, but they were all life saving ‘we’re doing this now’ surgeries, there had never been a prolonged wait, a countdown to intensive care. It was torture, a worry so extreme that it could take my breath away.
“Hello,” I answered the phone a week or so later.
“How’s Pinkie?” asked our favourite nurse.
“Great,” I replied.
“Bring her in tomorrow and we’ll do it.”
Our favourite nurse greeted us, our bed was next to the window as far from the bin as it was possible to be, and Pinkie didn’t have a temp. The surgery went ahead.
Pinkie was an absolute star, she was stronger than anyone could ever have imagined and only popped in on intensive care for a nap after the operation, she was back in her bed by that night and slurping on water almost straight away.
“Come on Pinkie, give me a poo,” I begged. It took a while, more than a day and a night but finally Pinkie did her first one and I was ready with my camera.
“Check this out [pic attached]” I sent to pretty much everyone in my contact list.
Never has a poo been more celebrated, I gazed at it like I had Pinkie when she was born, it wasn’t as cute admittedly, but it was ours!
“I bought these for Pinkie,” I beamed at Mr, “they are cashmere tights and the softest thing you will ever touch.”
Pinkie had never worn anything with a waist band so the prospect of stripy tights and a dress had become the stuff of dreams. Mr raised one eyebrow in the way that only Mr can.
“Should I ask how much they were?”
“£38,” I beamed.
“Christ, what are they made of? Swans pubes?” he said, but I knew he didn’t mind “that’s more than £1 a centimetre,” he said as he held them in his hand.
“But they’re soft aren’t they? And Pinkie should have luxury on her first waistband experience shouldn’t she?”
“Yes. Yes she should,” he smiled.