Happy 2 years of being a tubie child.
I would like to take you back to why we made such a big decision of giving you a feeding tube...
We always try to make the best decisions when it comes to your health and the tube was one of them.
I still remember how hard our first year was trying to figuring it out what else we could do to put some Weight on you, how to get you to sleep long enough for you and us to get some rest and energy. Your constants needs to be fed and would only eat such a small amounts at a time. Your lack of energy to keep up with activities.
On your 5 short days at the NICU nurses and I did everything for you to latch on. You couldn't do it, it was just too much work for your tiny mouth.
When we got home i would just pump at all times of day to keep up with your feeding needs. I ended up making so much milk that our freezer had nothing but that.
We started feeding therapy along with swallow study to show us how you were eating.
Oral aversion, coordination, silent aspiration were all the reasons it was so hard for you to eat.
So we would thicken your food with cereal. Mix your milk with formula for extra calories. Massage your mouth muscles, and tons of patience when it came to eating time. Days you would eat without any trouble others it would take hours to get to that feeding goal.
Despite all we would try, your weight would just not go up.
It was a huge decision and chances were that with a tube keeping your belly full you wouldn't eat orally.
We took the chances.
We had to help you out.
2 years ago today, we were once again walking down that hallway, holding you in our arms to hand you over to surgeons.
Once again we hope it was what was best for you.
I was so nervous.
What if it doesn't help you?
First night you spent home after surgery. You slept 12 hours.
We didn't. We would wake up in panic and make sure you were okay.
Several time you had pulled out your feeding tube from your tummy and after panicking and shedding many tears, the second time it happened i managed to put it back without a problem.
You have more patience to eat orally and concentrate on coordinating your chewing and swallowing.
You will get there with time and practice.
You have made it recently to the 3.45 percentile in the weight chart when for the longest you were not part of it.
We also know with time , when you figure it that coordination issue you will also let go of the need of your tube.
We will keep on practicing it until you get it. Half of it might end on the floor and we will start again without giving up.
Happy tubieversary... keep on thriving.