I was afraid of something that ultimately made your life so much easier and gave your body so much more energy.
Everyone tells me you aren't the right size. Below this percentile. Not quite to that one.
You love to eat. But it’s a challenge for you and you burn a lot of calories doing it. It took me too long to accept that you needed a gtube to thrive. You needed a gtube to keep you going when you were too sick or too tired to eat. You needed it to help you grow.
Every time you get sick I am so thankful for that gtube. And I'm certain you also get sick less often because you have it. You have those extra calories to fight those nasty bugs.
When you can't fight those germs off, I can make sure you still get your meds and the food/hydration you need to keep you out of the hospital for dehydration.
And your teeth! They love me for it. Those resident dentists in the early days thought your cavities were from nursing before bed, ha! Try several medications laced with sugar several times a day. Try severe acid reflux several times a day. Both of which have dissipated due to not just gtube feeding, but eating a healthy, organic, blended diet. *
It took a few years even to get into the blended diet. It was scary.
There was no one to support me aside from online forums and a super book, Complete Tube Feeding, I got the BlendTech mixer well before we started using it for blends. I even made oral blends before tube blends.
I was afraid. Afraid something would get stuck. And one evening it did.
I had figured out a way to get Sebastian's blend through the pump rather than just via syringe.
The pump administers the food at an even pace which is helpful in avoiding reflux for him. It still gets stuck and I have to fiddle with it but once I do it flows through. Except this time it didn't.
It was either hemp powder or ground flax seeds that did it. I had just changed Sebastian's mic-key button two days earlier. Those things aren't cheap. I had to do it again. Luckily I always have a spare, just in case.
So I popped the tube out and I saw that tiny speck stuck and no warm water syringe would clear it. No soda water available either. I switched the mic-key button out and finished giving him his bedtime meds.
After he was asleep I fiddled with the button some more; more warm water flushes and some massaging of the tube. Finally I was able to clear it.
Sebastian still has reflux. I try to slowly increase his tube feeds but he loves to eat to (soft puréed foods).
Doctors still tell me he doesn't weigh enough. I know this. But his legs continue to get longer. I know he's growing. I also know he will never be the size his age says he is.
I never tell people how much he weighs because it would shock them. But he's healthy, and the gtube helps keep him even healthier.
I remember the week before his gtube surgery I would massage lotion over his tummy after his bath. I did the 'I love you' massage to help move his air through his tummy because it can be so painful for him sometimes.
I remember thinking this tummy will never be smooth or without scars again. It will be changed forever.
It's a battle scar well worn, just like my own stretch marks from birthing two children.
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