When you decide to have a baby, you're really just flipping a giant coin, or rolling a giant set of universe dice. If you're lucky, like so many of us, you get a mostly perfect baby with no outward signs of dysfunction. If you're not so lucky, like so many of us, you get a baby with some serious problems.
We are about to be placed on the OR schedule for placement of a permanent gastrostomy tube. It is the only way my baby can come home and eat safely. Part of the surgery will also tighten the sphincter muscle in his tummy so he will not reflux and choke. I watched him do that very thing yesterday and he turned blue right in front of me. It was horrifying.
I hate this. I hate it so much I can barely breathe. Mostly I hate that if I say the words "feeding tube" people will think I have a disabled baby or something, and I DO NOT. My baby is so beautiful and perfect and I love him so desperately...and I don't want anyone looking at us with pity. He just can't eat. And right now I will do anything to get him out of that NICU. To get him away from the many, many doctors who come in and poke and prod him every damn day. He needs to come home and be loved and cuddled and held and played with, and yes, fed through a stupid old tube into his belly so he can grow and get strong and hopefully show all those stupid old doctors that he will be just fine.