For the longest time it was a struggle to get Oliver to eat anything. He had developed a negative association with things in his mouth after countless surgeries, tests, and living with tubes down his throat, and we still have no idea if eating causes him discomfort. While Addison started solids at 4 months old and was a master of self feeding by her first birthday, Oliver didn’t start accepting tastes of food until he was 8 months old and has only just started to bring finger food to his mouth now at 1.
We knew from the beginning that there would likely be some feeding issues with him, it is not uncommon for TOF/OA babies to have some level of difficulty but there is a really big spectrum of severity. I think Oliver places in the middle. Some kids are lucky, they have their surgery and don’t really look back. On the other end, some aren’t even able to have their surgery (for a whole range of reasons – that’s a whole other blog post!) and aren’t able to start oral feeds for months and months. They can battle motility issues, develop food aversions, and struggle with sensory problems after months of being tube fed (and that’s just the eating side of things) there is a entire universe of on-going digestive, respiratory, nutritional and orthopedic issues that TOF babies face.
Just before 8mos, we started discussing the possibility of having a feeding tube placed because of his lack of eating solid food. At that point he was on like 11 bottles of EBM a day (just typing that makes my boobs cringe!!) and was only just managing to make his daily dietary requirements. According to his dietician, most kids his age had maybe 4 bottles a day, and were well on their way to 3 meals. I remember being so upset at the idea of a feeding tube. I was worried about how it would feel for him, and I kind of felt (perhaps wrongly? I don’t know) that getting a feeding tube would be going down a path that would mean a whole host of other complex needs and issues that I was so hoping to avoid. I did eventually get to a point that I didn’t care, knowing that whichever way he was eating the only thing that was important that he was getting fed, but it did take a lot of inner talks.
Then somehow, after months of feeding clinic and therapy, one night at dinner he opened his mouth for a spoonful of puréed fruit. Then another spoonful, and another, and another. Shane was feeding him and we both couldn’t believe our eyes… He was opening his mouth and swallowing like it was nothing! He must have thought we looked like fools we were so shocked and excited haha. And from then on it just got better and better, he now eats three meals a day with lots of snacking in between!
Oliver is now getting his main nutrition from solid foods eaten orally, only having 2 or 3 small bottles a day (more for comfort than nutrition) and we couldn’t be more proud of him! The only thing is he can’t seem to handle progressing from purées to lumpy mashed food, and there is only a handful of finger foods he can manage to get down (macaroni pasta pieces, quartered blueberries, and select diced + steamed veggies). He has no problem putting them in his mouth and chewing, but after swallowing food gets stuck in his oesophagus and creates a blockage. We call it a ‘stickie’. So far he has been able to clear them all on his own (by bringing it back up) but it is not uncommon for kids to go to hospital and get it removed. There is something wrong with the functionality of his oesophagus, even though it is joined, it is really hard for him to carry food all the way down to his stomach. It could be a number of things (E.O.E or dysphagia are the top suspicions) and we are waiting for an endoscopy in the new year to get a biopsy and a closer look at what is going on.
Until then, purée it is!! I thought I’d share what we use to make Oliver’s food and what a typical day looks like for him meal wise. When you also take into account his allergies (rice, cows milk, egg and peanuts) it gets really hard to think of meals for him. I know how hard it has been trying to find recipes and inspiration on google and pinterest, so I want to start and share some recipes in case someone with a complex diet needs some ideas
I was going to post a recipe in here, but I haven’t gotten organised enough to take pics of the steps so I’ll wait until I make it again and snap it along the way. It is a Beef Casserole packed with veggies, so stay tuned! I’ll link it here once I’ve written it