As you already know she started swelling Monday. Each day she has gotten a little worse with most of the swelling in her head. She does not look like herself, or even normal for that matter, at all. Her head is just as big or bigger than her body. She has gained 2 pounds this week from fluid. I do not want to post a picture because I do not want anyone to see her like that. It is hard to look at. Her hair is falling out by the handfuls because of protein deficiency, they say.
They had to go up several times on her meds and the vent. We got a call at 7am this morning (first call since she has been born other than the surgery updates) letting us know her blood gasses were terrible, she had a miserable morning, and they had to go up on the vent. I was so scared!
The GI results came back and most of the stuff they gave her to see where it traveled (seen by xray) had to be pumped from her stomach that night because she kept vomiting and not much of it had gone anywhere. We found out that a very small amount traveled into the bowels. All we have heard since then is that her bowels might not be "awake" for one reason or another. They were talking about bypassing her stomach and going straight into her small intestine (I think) to feed her. This might require a surgical procedure but we are not sure right now. I think they are kind of waiting to see if she stabilizes before further discussing that.
Her pleural effusion is a different story. We get mixed answers all day depending who we talk to. The only facts we do know is that she is getting very little drainage from either tube (jp or chest). Whether they are working correctly, we do not know. Mystery!
She looks aweful. I have been in tears most of the day. It is so hard to see your baby like that. The drs do not really seem to be concerned about anything. What worried me was when she finally opened her eyes this evening she did not look around like she normally does. She stared straight up and did not move her eyes to your voice. She has ALWAYS done that. It was like she was not really there. I hope it is the drugs. I just want my baby to feel better.
Sorry no pics this time. I promise to post some as soon as the swelling goes down. Thank you all for loving us and loving Sunni. <3