FEEDING DIFFICULTIES

Dear Baby,

Mommy is getting worried about you. Your doctors and I are trying very hard to encourage you to get all of the nutrition that you need by mouth, that is, taking bottles on your own.

You are doing very well, and making tremendous progress, but I am afraid we will run out of time. Right now you are five and a half months old and weigh 12lbs 10oz.

The doctors have said that if we can't get to the point where they feel comfortable removing your NG tube by the end of the year, that they want to start considering a G tube directly into your stomach.

I do not want that for you. While other families have said it's been the best thing they've done for their babies, I want you to be able to live as normal a life as possible. I don't want you to have to deal with nosy people asking questions or feel nervous to wear a two piece bathing suit if you want to.

I want you to be well enough that they don't worry about having to get access to give you medicine or fluids in case of a metabolic crisis.

Last week was a rough one. Each week they try to push you just a little closer to your goal, but this time I think we pushed you too hard. On the bright side, we are now having bottles all day, but unfortunately you're still on the pump at night. I guess that's good cos I can sleep, but it means we're still relying on your NG tube, which I don't want.

You started out by crying at night, waking up all night and unable to sleep properly becos you had a stomach ache. You were throwing up every night. I just think the pump was increased too much. So we turned it down and you have been able to sleep well since, but are still throwing up, though it's barely any at all now. I'm hoping that tomorrow you won't throw up any more.

I was so scared the other night. I picked you up to change your diaper, and you threw up while you were lying down and started choking. I sat you up and patted your back trying to help you, but you were flailing your arms and legs, kicking furiously and wiggling your head, panicking. You weren't crying or coughing or anything, so I knew there was no air getting to you. I was panicking too, and just as I was reaching for my phone to call the ambulance, you started coughing. I kept patting you, trying to help you, and eventually you were screaming your poor little head off, and I knew you could breathe again. I cleaned your baby face, your eyes were bright red from being burned by the throw up. We took a nice bath and got you all cleaned up and into some new comfy pajamas.

It really scared me, and I felt horrible that something like that happened to you. I feel like it's my fault and the doctors' fault for trying to push you too hard. I'm so sorry, baby. I just want you to be able to be the normal, healthy and happy baby I know you are. I love you so much.