Feeding woes

It's easy to fall in love with fall, isn't it? What a great time of year. And the colours become even more vibrant as we get deeper into October. I especially love the sound of dry leaves crunching under one's feet. So satisfying 😁

Last week we went to see the pediatrician and we discussed our ongoing feeding problem. Sadly, we're running out of options with Arabella, and it seems that the longer we tube-feed her, the worse things are going to get.

The doctor recommended we try a specific combination of meds this time - 'prevacid' along with 'domperidone'. When used together they can sometimes make a dramatic difference. 

Domperidone improves symptoms of nausea, vomiting, bloating, and feelings of fullness. The idea is that Belle's stomach will empty more quickly, she'll feel better, and maybe she'll be more likely to take a bottle. The drugs are insanely expensive, though, but we're going to give them a shot for a few weeks to see if they help (even a little bit). If they don't, we'll kick them to the curb. This is our last attempt to see if drugs are the answer (and I highly doubt it!).

Last week it was time to give Arabella a new feeding tube (we change it every 3 weeks or so). Kiera and I decided that it was the perfect opportunity for us to do a little experiment. We removed the tube for the entire afternoon to see if Belle would be more willing to take a bottle. "Maybe the tube is bothering her, and that's a big reason why she won't eat?", we thought to ourselves. 

We've been wondering about that for a while. There's no doubt that the tube gives her a lot of discomfort. It makes her cough, wretch and gag. But unfortunately, we didn't notice a change in regards to bottle-feeding. Arabella missed a few meals and it looked like she was definitely hungry, but she still refused the bottle.

We'd be interested to see how she would do over a few days without the feeding tube, but that would require us to go to a hospital. We would have to hook her up to an IV so that she wouldn't get dehydrated. She'd likely miss a lot of meals before we'd see any kind of progress. And even then there are no guarantees. 

Ultimately, change won't happen over a few days or even weeks. That's what I've come to realize. Change might take months and months of hard work.

Her bib says "Purr-fect time for dessert" 😊

We've been slowly introducing Belle to solids. Things like mashed bananas, apple sauce, sweet potato...

Her face says it all 😂

She doesn't seem interested in any kind of food, and she ends up refusing the spoon and getting agitated if you push her too hard. We have to work on things very slowly and carefully, so that we don't make matters worse. 

For every meal (during the day) we attempt to give Arabella the bottle...we try, and try, and try some more. 

And each time we're shot down. 

Sometimes it's discouraging for us as parents. Sometimes we feel like we've failed, even though we know that it's out of our control. 

It's daunting to think that we're going to be faced with this challenge for years and years to come (potentially). Feeding aversions are a complex issue that require a lot of work, patience and professional therapy. 

And we've only just begun...

Working on feeds well into the future is going to be an emotional journey. It already is. But we do our best to remain hopeful. It's all we can do. 

In the end, we know that this is a small price to pay, given all the hurdles Arabella's jumped over in the past. 

That's the bottom line, I suppose. We're so fortunate to be dealing with issues like this. And we know we'll all get through it - because we've been through much worse. 

In the long run, we hope to get Belle off the acid-blocking drugs, but it might take some more time. Currently her reflux is a big problem, and there's a danger that the acid in her stomach would burn her esophagus and cause major inflammation in her lungs (when she throws up and some of the aspirates spill over). That's the reason we've kept her on the drugs, even through we're very much against them. 

We've had to pick our battles very carefully...

We've even started to see a naturopath. She recommended we try things like 'chamomilla' and 'slippery elm' to help get Arabella's body and digestive system back in order. She also suggested that we take her to a chiropractor, too. The nervous system can have an effect on all of this as well.

We're trying everything at this point. We're being open-minded and researching as much as we can. Luckily there's a ton of support and information out there.

We're going to get through this! Like the old saying goes, "One day at a time" 😉