You Wouldn't Read About It

These trans-pyloric feeding tubes are designed to stay in for 3 months. Three months!

Shitty Day Number 1

After probably 3 weeks of enduring 6-10 reflux-vomits every day, we took Frankie's tube out and reinserted it. Maybe it was kinked. Maybe it wasn't sitting correctly. Maybe it was irritating something. We had to try. As expected, it was horribly traumatic. She screamed and sobbed after we threaded the tube into her stomach then struggled to get a ph reading. I battled to keep her awake as she cried and her eyelids tried to close. I knew we were going to have to shove the tube further in once we finally managed to get a reading so there was no point in her taking a nap. It went on and on and on. After more pinning down and crying, we finally got the tube all the way in and, within seconds, Frankie was asleep in my arms.

We began running a little feed through the pump to help move the tube through her digestive system and I settled in on the couch, flooded with relief. The hard part was over. We would let nature take its course, moving the tube into position. After about 20 minutes, the pump beeped and ominous beep. Something was blocked. Kinked. Inside her. Ringing our nurse immediately confirmed our worst fear. We would need to start the whole damn process again. We put her on the mat while she cried, still exhausted, removed the tape, pulled 40cm of tubing out her nose, reinserted the tube to her stomach, got a ph, pushed it further in, held her on her side for 2 hours. Thank goodness for grandma who arrived just in time to, with a magic touch, to share the load of holding the baby on their side against their will.

Shitty Day Number 2

After chatting with the paediatrician about the ongoing vomiting, we went to the hospital to get an x-ray to check that the tube was placed correctly. I mean, what's a bit of cheeky radiation on a Friday afternoon? The last time we had to endure x-rays (note the use of the plural...insert eye-roll here), Frankie screamed bloody murder. This time she was incredible. She sat in her pram (she NEVER sits happily in her pram), had an x-ray without even crying, came home calmly in the car and had a sleep. We were so proud of her. Plus, the x-ray showed that the tube was where it needed to be. Until it wasn't. At about 5pm, she vomited the tube up and out her mouth. She'd gone 4 weeks without doing it but, on the day we got an x-ray to confirm it was in right, it happened. Of course it did. Because this is our life. And so the whole horrible process of getting it back in began yet again. Cue pinning down the baby while she screams.

Shitty Day Number 3

Frankie slept for 12 hours! We went to the climbing gym. Had a lovely morning. Her 'mamas' and 'bubbas' babble returned in full force and she crawled around chatting all day. By 2pm though, Frankie had vomited her tube up and out her mouth. Again. Bring on yet another tube insertion. It's almost like she's coming to terms with being held down while we do horrible things to her. She was a trooper. We dreaded what was coming next...keeping her on her side for 2 hours knowing Frankie's naps are predictably 30 minutes. It was going to be a long afternoon. But it wasn't. This sweet girl slept in my arms for a full hour and a half.

So...here we are. Three days in a row of inserting trans-pyloric feeding tubes on the living room floor. The reflux vomits are still constant except now, every time she coughs or retches, I feel sick to my stomach thinking that I'm about to see her tube coiled in her mouth and we're going to need do the whole thing again. My mind spins with what the doctors will suggest if this keeps happening. I don't even want to know. And in the meantime we have a baby who is sick so constantly that she, again, has no interest in food or drink. And I mean, when you vomit a thick rubber tube up and into your mouth repeatedly then have it pulled out your nose...why would you?

The only benefit of the tube coming out repeatedly is getting to see Frankie's whole face. But, with that, comes the pain of knowing how few hours in her year-long life to date you have got to experience her whole face.