I know this because I felt all those emotions and more when, at the age of 20 months, Miss Z got a gastrostomy (G-tube).
I have a photo of Miss Z and her sister, taken on Pancake Day – both girls with a pancake in front of them, which they ate with enthusiasm after I’d taken the picture.
Five months later, Miss Z had lost her ability to swallow and was being fed entirely through a nasogastric tube.
Even now – three years later – I look at that photo and wonder what I did wrong, what I could have done differently so that Miss Z would be consuming pancakes with the same zeal today.
However, it was also an easy choice.
In fact, by the time Miss Z got her G-tube, we were desperate for it.
Miss Z was no longer able to take anything orally and she hated the nasogastric tube with a passion.
And although Miss Z has little purposeful use of her hands, what ability she has was employed, 24 hours a day, 7 days a week.
With the sole objective of pulling the tube out of her nose.
For a girl with no fine motor skills to speak of, she became surprisingly adept at snaking a finger between her nose and the tube and giving a mighty tug.
After a few months of making regular trips to the hospital, where the nurses would wrap Miss Z in a sheet and hold her down to re-insert the NG tube while she screamed;
we were begging for a G-tube.
And when Miss Z finally got it, life became so much easier.
Suddenly, we could focus on other things – not just getting nutrition and medications into her.
For three years, Miss Z did amazingly well with her G-tube.
Then the chest infections struck.
Tests showed that Miss Z had severe reflux and was aspirating food and vomit into her lungs, which was contributing to the chest infections.
We were given two options by the doctors.
She could have a gastrostomy-jejunostomy (G-J) tube, which would allow us to feed her directly into her small intestine.
Which would stop the reflux and vomiting because there would be no food in her stomach to bring back up.
Or she could have a fundoplication, which wraps the top of the stomach around the oesphogus, making it more difficult for the contents of the stomach to come back up.
I agonized over the decision.
Suddenly it felt like we were right back where we started three years ago – making decisions for Miss Z that I didn’t want to make.
And wondering how we had got to where we were and what I could have done to prevent it happening.
In the end, the decision was taken out of our hands.
The surgeon decided that Miss Z’s stomach was too small for a fundoplication, so a G-J tube was the only option.
Agreeing to go ahead with the G-J tube felt terribly sad.
Miss Z’s condition is life limiting and I felt like we were taking another step towards exhausting all our medical options.
I also worried that the G-J tube, which requires continuous feeding, would affect Miss Z’s quality of life.
She is an active little girl and loves swimming and rolling on the floor – activities that aren’t necessarily compatible with being constantly connecting to a feeding pump.
I also worried about the extra strain it would put on our family.
Another responsibility, another thing that we have to deal with if we want to set foot outside the door with Miss Z.
And it is another thing that can go wrong.
I worried about managing it so much that I started to have dreams about making mistakes with Miss Z’s feeding.
In my dreams, Miss Z would get unwell and I would be wracked with guilt while everyone around me accused me of getting it wrong.
Of forgetting, being incapable of looking after my own daughter.
It was with a heavy heart that I took Miss Z for her surgery.
I knew it was the right choice, but it wasn’t a happy one.
The surgery was quick and easy – I barely had enough time to get myself a coffee and muffin from the hospital café before the doctors were ringing to tell me that all was well.
They used the same stoma (hole in her tummy) as the G-tube, so it was just a case of putting the new tubes in the right places.
She woke up happy and didn’t show any signs of pain. Once she was awake, the dietician arrived to create a feeding plan.
We had to slowly increase the rate at which she was fed to make sure she could cope.
However, once we hit the target rate, she would be able to have 7 hours a day free.
This was a pleasant surprise for me, since I’d expected her to be connected to her feed for 23 hours a day.
After a bit of begging and cajoling on my part, Miss Z was sent home that evening – happy and well.
The next week was a busy one, since Miss Z was starting school and we were adapting to a new feeding routine.
I was so focused on the start of school, getting the routine right and figuring out how to make her feed pump and formula more easily transportable,
I didn’t even think about how Miss Z had improved with the G-J tube.
And then, on Saturday afternoon, Miss Z pulled out her G-J tube.
I don’t think she did it intentionally – it was more likely to have been an accident when she was rolling on the floor.
We went back to the hospital, but because it was the weekend and the G-J tube needs to be inserted under general anesthetic using a special type of X-ray, they couldn’t put it straight back in.
So, she was sent home with a temporary G-tube and plans to schedule the procedure to reinsert the G-J tube sometime soon.
It has been that little step back that has made me realize just what a big difference the G-J tube has made.
It has stopped her reflux, which has made her chest sound much clearer. Her breathing no longer has a rattle to it.
She sleeps soundly through the night without being woken by coughing or vomiting.
With the G-tube back, all our progress has been lost.
She is miserable. She is retching throughout the day.
Her cough keeps her awake at night and she requires regular suctioning. Her breathing once again sounds like Darth Vader.
And despite my best efforts, she vomited all her medications this morning.
And so, I’ve been on the phone with the hospital today, pressing them to squeeze her into the surgical schedule as soon as possible.
I may not have been enthusiastic about the G-J tube, but I’ve quickly learned its value.
It may not be what I originally wanted for my daughter, but it is what she needs and it improves her quality of life.
And that, in the end, is what is truly important.