Home and hopefully staying here for a while

Ok, so being home has been a little on the rough side. Trying to balance the feedings with allowing time to be able to go out and do things with Drew has been a challenge and after her Dr's apt where she did not gain weight we have increased the amount of hours she needs to be on the tube. It would not be so bad if she was able to wear a back pack with the pump but she can't so she can only crawl so far away from us and we always have to be with her to carry the pole where she wants to go. If she wants to walk holy moly that takes talent. She holds both our hands and we have to figure a way to maneuver the pool all at the same time, not easy. Dinner time is the worst time for us. One it's so hard to cook because she's on the tube then and that is usually her cranky time. Thank you to our neighbors Gail and Tim who made dinner for us our second night home. On the other hand we are Soooooooooo happy to be home and in our own comforts. I will do this for as long as I have to as long as she is ok and gaining. Drew has been amazing and I can only wonder what this is doing to him. I worry constantly about that. All I can do is my best but I feel like it won't be enough. He is petrified that every time I leave his sight that we are going back to Tampa, poor guy. Ok, so for a Dr's update as I mentioned above she did not gain. At first I thought she did but after checking with Dr. W, she did not. My child who poops once every 3-6 weeks now is pooping all day. We are hoping that this is just because she can't handle the new stuff they have on, or that the flow is to fast. We have slowed down the flow but what that does is increase the amt of hours she is on. Right now we are 18 hours a day and by Monday could be up to 24. If this is still a problem after the changes in flow and formula things will not be looking to good. In that case there maybe a mal-absorption issue. I'm totally leaning towards the fact that she can't handle the resource 1.5 because she did fine in the hospital on pediasure. We will get stool cultures if we can just to double check. I have to check her every hour during the night so I'm a bit on the tired side. Rylee gets the tube disconnected and then all the food inside her and all the food in the bag ends up in her bed, not good. The one thing we thought the peg tube would help with was her wrapping the cord around the neck, this is what she did with the ng tube. Well, the other night I went in and she had the cord wrapped around her neck 4 times, what am I going to do??? This scares the crap out of me. Other then all this stuff we have spent the week trying to make it fun for Mr. Man. He goes back to school in a week and I don't want it to end on a sour note for him. We have had Stephanie over a lot. In the afternoons this is usually a lifesaver for me. They keep each other busy and it allows me time to focus on Rylee. We went to chuckie cheese with Deana and the kids and yesterday we had a playday at Deanas with Lucinda and Leah. It was great to just hang with everyone and hopefully we can start doing it more. Now all I need is a major MNO or just a NO does not have to be Moms. Oh well, I better go the fam is coming over for breakfast and then I have a MaryKay thing this afternoon.