Tuesday January 1, 2013

Aubrey says happy new year fan club!!


She had a pretty serious episode last night and she still weighs the same in ounces but gained some grams. She is in the bassinet still under several blankets all tucked in. When we got here of course she had another episode and they had to sit her up and pat her and remind her to breathe. So her oxygen is up a little higher now.

We are hoping to talk to the dr today. But he just rushed to another hospital due to another baby being born smaller than Aubrey was. So he needs to be there. Afterwards I hope he returns here cause I need to speak to him.

Aubrey is getting the milk directly into her intestine still. She was unable to tolerate the milk in her belly last week due to the muscle above her stomach not being strong enough to hold the milk down. If milk gets past it there is a possibility that she will aspirate and the milk will go into lungs. That is so not good and we don't want that to happen. But on the other hand, she needs to be getting milk in her belly now because she needs to begin bottle feeding. Last week the dr saw her not tolerate the milk in her belly and said let's put the tube back into her intestine and let her rest another week to build up that muscle and let it get stronger.

I am not a dr but Keli and I have a disagreement with them regarding this issue. It's seems to us that she should be taking a little into her belly and mostly into her intestine and slowly switch them around to all in her belly and none in her intestine. This will stretch out her belly slowly and build up her muscles due to use. My plan is to see how much she will need in a week per feeding. Then backtrack from there in equal increments to build her up. That's my ingenious plan so we will see what happens. I think i have a great plan. Makes sense to me. Some things we don't know is if the intestine is plugged due to the feeding tube. That would foil my plan.

If she doesn't get this feeding thing straightened out then we are looking at surgery. Argh. She is too little for all that.

But right now she is looking all cute.

Adam

Dr came through and talked with us. I guess I had a good plan but they have have never done it that way. Maybe once but he couldn't be sure. The dr in charge of Aubrey has made the orders to keep the tube in her intestine for a couple more days. So we maintain. After that dr comes back be will determine next action.

I guess since they don't ever combine bottle with nj (nasal jejunum meaning through the nose into the intestine). So that means that what they normally do works. What the normally do is wait a week or so and try it again but prolong the time of feeding. As in give her to 20 ml over an hour and a half. Right now she is on continuous feeding in the nj.

They are also going to look at her phenobarbital levels. No one ever said she was actually having seizures but come of the episodes are coming from the central brain area. They gave her some a while back but haven't upped the levels consistant with her growing size. So they will look at her levels to see I she needs to be upped.

Eye dr coming back this week sometime to recheck her eyes. That's normal.

Her weight is still in the curve. U can see by the picture of the chart that she is still in the normal curve but low. We will take it.

Keli and I got to hold her a while today. She got kinda hot so her hat was taken off to cool things down.

Adam