Sometimes I'm just so angry. So frustrated.
It all seems so unfair.
We worked so hard to get pregnant. So hard to stay pregnant. Then Pre-E came. And Robbie had to come early.
He fought and fought and endured so much- tubes in the throat, needles everywhere, wires, leads. He was so tired that sometimes he had to take breaks from breathing. It was so hard to watch him suffer, to watch him struggle.
And then things got better.
Finally he was breathing. Finally he could eat. Finally he could stay warm. Finally he could be held any time he wanted. Finally he could eat.
And it was bliss.
Over and over again we heard how well he was doing. How great he looks. How amazing his progress is.
And now there is this thing. The eating. It sounds so simple. He can eat any time he wants as much as he wants. And he seems to want to eat, only he doesn't.
He'll gnaw on a nipple. He doesn't fight the bottle any more. He doesn't seem to be in pain. His reflux is still there but the burning seems better.
But if he's awake he doesn't want to suck on a bottle. If he's sleepy- he'll suck away. Latch on and eat. But if he's awake- he'll only gnaw.
And no one knows why. Everyone seems to agree that it's not an oral aversion. He loves his paci. His loves to suck on his hands. On my hands. On a wrist ratttle. Anything but a bottle.
But he also seems to WANT to eat. If I put his milk in a Playtex Drop-Ins bottle and squirt the milk into his mouth he'll swallow it. But not if it comes from a dropper. He wants to seem like he's eating and getting milk and then he'll swallow. Only he won't suck.
Most days I can time his feedings around his sleep. He still starts off gumming at the nipple, but as he gets drowsy, he'll latch on and suck and then he eats. I'm able to get him to his daily food goal that way.
We started thickening his feedings with Simply Thick and that seems to have helped his reflux.
But then there are days like today where he doesn't want to nap so therefore he doesn't want to eat. Days when I have to put him down on his playmat and take some deep breaths because I'm so frustrated that I want to cry.
I set an alarm at night to feed him every 3 hours to be able to get as many calories as possible into him while I can.
I'm tired. So tired. I'm falling asleep feeding him at night. I wake up doing the head bob- and the bottle dropping bob.
I know what the doctor will say. A G tube. I don't want another G tube. I hated the one he had. It leaked all the time. And I'm convinced it made his reflux worse.
I just want him to eat. I want to know if or when he's going to outgrow this. I've experimented with cereal- he does okay. He probably ate a tablespoon worth tonight. Not bad for a kid who really shouldn't have solids for another 2 months.
Maybe when more of his nutrition comes from solid food he'll do better? Or maybe it will lead to more trouble? I don't know.
All I know is that I'm tired and frustrated and worried. I'm sick of worrying about every cc that passes his lips. He doesn't deserve to have an anxious, hand-wringing mom. He doesn't deserve a body that betrays him. He's already been through enough and I don't know how to fix it.