The Pros of Having a Tube-fed Baby

This is a blog idea that has been evolving in my mind for about six months and I feel if I don't write this down now, it will become a novel.  A very uninteresting novel, since there won't be a denouement, or climax!  I want friends and family who think, "Why Amy and Andrew?  Haven't they had enough bad luck this year?" to think, "Hmmm, I never saw their lives from this perspective."  This is in regards to how we feed Wyatt.  Wyatt is a 100% tube fed, he has a mic-key button, or a g-tube, that allows him to be fed a liquid diet.

Don't get me wrong, it would be easier if I could just put food in front of Wyatt, give him a spoon, and let him mow-down, but let's face it, that isn't going to be happening any time soon.  Wyatt just learned how to swallow water, so when I say we're taking baby steps to eating, it's actually more akin to amoeba steps.

Wyatt's mouth 'wide open', which we can only manage to do when he's asleep.

There are a couple of key aspects to tube feeding that make our lives easier, most notably, that I can feed  Wyatt whether he wants to or not.  This may seem mean to the untrained, non-feeding-tube parent, but all feeding-tube children have to be put on regimented feeding schedule, so that they can get the exact calories and nutrients needed in a day to 'thrive'.  So, whether you agree with me feeding my child whether he wants to or not, is besides the point, Wyatt will eat four times a day at a 5 hour interval, because he MUST.  If we were to fly by the seat of our pants, or go by Wyatt's hunger cues, I can tell you right now, judging from the many forums of parents who have tried this, the child will not thrive, and the child may even come to hate 'eating'.  I should also point out, there is no doctor or dietitian who would give the go ahead with feeding on demand for the first years of life for a child, as they would want to see a quantitative measurement of your child's nutritional input, and thus, output, to ensure that they flourish into healthy adults.  Enough said, right?  Not exactly.

Wyatt attempting to eat in January 2015.  Since removing any oral foods from his diet in February, and his choking event in April, it's been difficult to convince him to eat.  

Wyatt just recently migrated from a 5-day feeding schedule, to a 4-day feeding schedule.  This took us approximately two months to complete, because it involved adding 5 mls of the last feed of the day (10 pm), to every other feed.  This means the 5:30 am, 10:00 am, 2:00 pm and the 6:00 pm feed, each had 5 mls added to it.  The measurement then changes from 240 mls to 245 mls week 1, and by week 8, we finally find ourselves at a 290 mls per feed.  Alternatively, the 10 pm has 5 mls taken off of it every week, until we reach 00 mls, and that my friends, is how we got rid of the 10 pm feed.   So, yes, I can feed Wyatt when I want to, but it is also very difficult to change his schedule.  There isn't much room for adaptation.

Another Pro to tube-feeding, and this is only possible because of the type of feeding equipment we have (a Zevex Inifinity), is that we can feed Wyatt anywhere.  Going down for a nap? No problem. Plug him in.  Need to run errands?  No problem, bring the coordinating back pack, and plug him in.  Want to go outside for a walk in the stroller?  No problem.  Leave the unit on top of the stroller's hood, and you guessed, plug him in.  I can even feed Wyatt while bathing, although it is slightly complicated now that he moves so much (the tube gets tangled with his limbs), and even while we are at the public pool.  We don't do this often, but we have done it.  The unit itself is 100% waterproof.  Not water resistant. Waterproof.

Wyatt getting fed while playing with his brother and sister.

Wyatt getting fed while on a stroller walk.

How he gets fed when he's too active for the pole.  His feed is placed inside this very expensive (and cheaply made might I add) backpack, designed for the feeding bag and feeding unit.  The tube is threaded through a hole on the side of the back pack, and connects to his extension, which is in turn, attached to his mic-key button.

If we miss a feed, whether it's because he's not tolerating it (happens when he has gastro) or simply because we weren't aware of the time, we can feed Wyatt at any point of the day.  Whether it's midnight or noon, Wyatt can get fed.  Again, another versatility that one simply does not have with an orally fed child.  I don't have to find myself with a cranky 4 year old at 6 am in the morning, because he didn't have his snack when he was supposed to, instead, I can feed him when I can, to ensure there is no inconvenience on my part.  Although, feeds beyond 10 pm, are always inconvenient!

Fell asleep while eating, and continues to get fed.

Most importantly, I can feed Wyatt anything.  Some tube-fed parents opt for the they-get-what-we-eat, so that may be hamburger and fries one day, and pizza another.  We however, would likely opt for quinoa and salmon.  Along with a ton of other foods, Wyatt gets the best of the best.  He is the healthiest eater in our house.  I can feed my two year old steamed beets, raw kale and organic quinoa.  Baked salmon, kefir, and whole grain pasta.  Boiled eggs, raw swiss chard and cantelope.  Bbq'd steak, cucumbers with the skin, and parsley.   How many 2 year olds can do that, and finish their whole meal without complaining?  Not many I'm afraid.  My older children, although they have been around all of these foods their whole lives, will not eat steamed beets, bbq'd maybe, but not steamed.   Quinoa is a gigantic mess!  And they only started eating beef this year, and actually enjoying it.  I don't have to sit in front of Wyatt, and wait (and beg?!)  for him to finish his meal.  He eats whatever I put in his feeding bag, and lucky for him, it is a great variety of fruits, veg, protein, dairy and fats.

The food-stuff for Wyatt's feed. Freshly picked out my garden: beets, carrots, parsnip, cabbage, tatsoi, swiss chard, parlsey, kale, and broccoli.  

The end product, as you can tell by the colour of the jars, there is a ton of variety in his diet.  This baebe does NOT go through 'phases' of food, that's for sure!