Well first off let me say that Carly was weaned the other day to 1 liter on her oxygen after being on 2 liters for only 3 days (super fast wean) she seemed to be doing fair and the next day after being weaned to 1L she had an eye exam to follow up from her ROP surgery. This dang eye exam set her back! She went from 1L back to 3L and still on high oxygen needs (50-60%) her norm is 28-40%. Her heart rate has been hitting so close to 200 (174-195) and her resperations have been all the way up to 101. She's just not herself. I thought she was getting sick. So they ran a CBC with diff, chest x-ray, blood gas, and something else but I can't remember what it was. Everything came back good thank God. But her gas wasn't as good as it should be but they said they will accept what it is for now. I was sitting with her all day yesterday and today. She just looks so pitiful. I didn't wanna hold her and get her anymore stressed out so I just let her lay in her isolette. I was sitting there this evening after about 5 hours and decided that I couldn't look at her anymore. It just hurt me to see her look so uncomfortable. If I looked at her anymore I would started crying and not been able to stop.
Now today we had a team meeting with her Dr., NNP, EI coordinator, ST, OT, and PT. So they didn't tell me too much that I didn't already know. But we did discuss her neurological disorder and what it holds for her stay, her coming home and her future. As far as her brain defect we are still not sure as to why this is what it is. But the Dr does think it has A LOT to do with the fact that she dosen't have the suck swallow breath reflex. Or even a suck reflex in itself or the need or desire to swallow her own sectetions. She refuses to sleep on her back and Dr fisher thinks it has to do with her secretions filling up in the back of her throat and her not knowing how to swallow then and it obstructs her airway so she starts desating. They are pretty sure if the suck and swallow reflex dosen't show it's face in the next 2-3 weeks they will be setting up a time for surgery to place a g-tube. And they said that she WILL have to have both herneias fixed before going home. There was a lot more info given to me but I can't remember it all right now. Oh yeah they said when they do the g-tube they would also probably do another procedure to keep her from refluxing her food to keep her from asperating seeing as how she has NO gag reflex. But he didn't say what the name of that procedure was called. So as most of you already know they again told me, she probably not be coming home before 2 months. So she'll be 6 months old before making that trip out the front doors of the hospital. Today makes 16 weeks (112days).