Life on the Homefront

Well, first let me say I am sorry I haven't posted sooner so that everyone knows that we are all right, but we have been hanging in there. I feel like I have been going nonstop. I actually feel like a 24 hour nurse. It seems like there is very little time for much else except giving meds and starting feeds for Liliana. I am so jealous of all you mommies out there that have babies that can eat from a bottle and aren't on any medications or are on very few. I just keep telling myself that it won't be forever. It could be worse, she could have came home on oxygen. Just like a mom worries about their child I am very worried about Lily. She seems so delayed in all areas. She can't eat like a normal child. Her feedings through the NG tube have been both good and bad. At least once a day she starts gagging during her feed and spits up both mucos and formula. She also was constipated for two days and I ended up having to give her an enema to help her go. I just feel so bad for her, she has been through so much! She doesn't really smile, in fact she has been acting almost paranoid. Every little thing scares her. I mean even putting her on the changing table of my pack in play scares her and she cries. She does that same thing when being picked up sometimes. When she is sitting in the bouncy seat and it starts to bounce, sometimes she cries and throws her arms out to the side like she is going to fall. I also feel like she doesn't really know me because for the majority of the 3 months she was in the hospital I was not able to hold her. I feel like she totally lost that need for bonding with others, especially me her mommy. I hold her and it's like she is looking at me as if I am a stranger. When I talk to her and try to calm her down she usually cries or gives me her pouting lip. It is so heartbreaking. We had our first PT visit last Wednesday, and we have another one today. She is so low. She can't hold her head up very well at all and she absolutely hates being on her belly. She is almost 9 months old folks! I read other peoples blogs and their babies are doing so much better than Liliana. Some of them also went through open-heart surgeries. It just has to get better, right? I just want her to be at least a little bit further along than she is. I am very concerned about her eyes as well. They have improved since she is basically off of the heavy duty narcotics she was on but she still has issues. I wonder just how far she really can see? They did a bedside exam of her when she was in the hospital and told us that she can see but that they would need to do further testing in their office. I need to get her in there asap I guess. Also the neurologists examined her and said that she doesn't appear to have a neurological disorder but the moving or roving eye movements that she has are probably nystagnos (sp?). So I guess that was good news, but I feel like it is always something. We go back to the clinic to the cardiologist on Friday and I definitely have to discuss all the issues we are having with them. We just need a lot of prayers and support to get through this one day at a time. I will keep everyone posted as much as I am able. More later...