Trans-Pyloric Tube Insertions- At Home

It's scary how used to pinning Frankie down while she screams I am. The crying can echo through the house and tears can pool around her eyes. She can squirm and cry so hard she holds her breath and I barely notice. There's a job to be done. Usually, a tube to insert.

After the two traumatic days at the hospital getting Frankie's trans-pyloric tube inserted, life was immediately different. It was like a switch had flicked. All of a sudden we were given an insight into a life we didn't even realise we had been missing out on. An insight into what it's like to enjoy your baby. To play. To laugh. To watch them smile and roll around. To love them with ease. For eleven months we fed Frankie every three hours and held her upright for two hours after every feed. She was rarely given the freedom to play on the ground and when we watched other babies have a feed and immediately get put down, it was mind-blowing. What do you mean they don't vomit their entire feed if you move them a centimetre the wrong way? What do you mean you don't spend every moment with your heart in your throat waiting for them to vomit?

For the first time in eleven months, our jaws unclenched and our shoulders dropped. Our heart-rate slowed ever so slightly and we understood what normality felt like. Sure, Frankie was now attached to a pump for 20 hours out of every 24 but it was more normal than we had ever known. Frankie went 3 days without vomiting milk up. That's longer than she had ever gone. Ever. In 11 months she had never gone that long without vomiting. Imagine that. Vomiting up to 8 times a day for 11 months.

Three days later, Frankie's reflux made her vomit up a tiny amount of stomach juices. The tube that had taken 2 days to insert came up from her intestine, through her stomach, up her oesophagus and out her mouth. I quickly yanked it out her nose before screaming out to Chris then curling into the foetal position. It was like we'd been shown what a happy baby looked like and now it was all being taken away. I wished we had never saw our baby happy. I wished we had never seen her start to make gains. To want to crawl, talk. I wished we never got to see it. The doctors had been right...the trans-pyloric tube wasn't going to work for Frankie. Her vomits were just too violent.

We called the hospital who informed us that, with it being a Saturday, there was nobody there to insert it again under x-ray. Their advice was to put a naso-gastric tube in and go back to 'vomit life' until Monday. Lying on my side, bawling my eyes out I had a thought..."what if we tried to put the trans-pyloric tube back in ourselves?" Sure, the nurses had failed and it had needed to be done under x-ray a few days ago but we knew how to do it. We'd seen it done. And so we did. On the floor of the living room, we pinned Frankie down and went through the steps we had witnessed a few days earlier. We were like a well-oiled machine. Tube in to 28cm, tape, pull stomach content out with a syringe, test ph, remove tape, push tube in to 39cm, re-tape, keep on side for 2 hours and cross all fingers and toes.

Monday rolled around Frankie still hadn't vomited so we assumed the tube had made its way to where it needed to be and called the hospital. We wouldn't be needing the x-ray insertion after all. Needless to say, they were very confused.

Nurse 1 assumed we had inserted an ng tube, not a trans-pyloric. Nurse 2 called, again, very confused that we had inserted a TPT ourselves. At home. In the living room. When Nurse 3 rang to check that nurses 1 and 2 had it right, I got very nervous that we were about to be roused on like naughty school kids. Only we didn't. Nurse 4 rang and confirmed that she had spoken to our paediatrician who was, "thrilled" that we had got the tube back in. Turns out most doctors wouldn't even dream of letting parents do this procedure but there was now a note on Frankie's file to say we had the go ahead. Turns out that would come in quite handy.

I spent every moment of the next few days terrified it was going to happen again. That every few days we'd have to go through the whole process again. But, we didn't.

Three weeks passed before the tube was vomited up and out Frankie's mouth again. This time the hospital had given us spare tubes, trusting us to go through the process ourselves. After all, we'd had more luck than the nurses who ended up with the tube kinked in Frankie's throat to begin with. We had a couple of hours to kill before she needed to be fed so we took the opportunity to get a few 'I'm almost one' photos of the tiny dinosaur. Then, we pinned Frankie down once again. It didn't go smoothly. It took three attempts, much problem solving when we couldn't get a ph sample, and keeping a baby who was physically and emotionally exhausted awake for what felt like an eternity. But, we did it. And she's putting on weight. And she's happier. And so are we. And that's a pretty big deal.