Can you say overwhelmed??

So, I'm actually not overwhelmed by the trach (just yet). I am overwhelmed but the home ventilator. The thing is big and the tubings are also big. The y-connector that connects the tubes from the trach to the machine is bigger than Autumn's whole chest. Yesterday after they put her on the home vent I wanted to hold her and she was not connected to anything but the machine but they still had to hand Autumn to me and then tape all of the tubes to a pillow so the weight from them would not disconnect them from the trach. Yeah, that is going to be fun trying to hold her at home and letting the kids hold her. I also asked if the portable vent would be smaller-um no-it is the same vent it just comes off the stand and goes into a backback thing. I told Autumn she better really like her room because it does not look like we will be leaving the house except for doctor appointments. I'm still clueless to how I am going to be bathing her and moving her around the house. I thought this trach would give us more freedom to treat her like a normal baby and not have her stuck in a baby bed the whole time. So, I continue to pray that God will help her get off the vent soon. I am also overwhelmed but seeing how different the settings are and now having to learn what every little thing means. So, I told James it looks as though he is going to have to miss 2 weeks of work to be here 24/7 to train with me. I know we don't have much nurse care in Midland and I don't want us to rely on other people to know everything--I want us to be able to understand and know everything so I want him here to learn it all with me and hopefully he will pick up the things I don't understand and explain them to me. HA!

The RT showed me yesterday how to change out her trach ties and clean them which will have to be done once a day. I was not hard at all--it just takes 2 people since one has to keep her still and hold in the trach/vent while the other cleans around the opening and her neck and changes the ties. I was also shown how to clean around her G-button and how to take the connector tube out to clean and how to put it back with milk in. (I don't know how the font just changed-I hit some button and now can't find it again). Anyways, they are going to wean her down from continous feeds so that she can start feeding a bolus every 3 hours instead of eating all day. They said continous feeds are nice at night because you don't have to get up and feed her-so maybe they will keep those. ;) The G-button is also nice because medicine just goes through the tube and no fighting to take it. I want to now get Madison and Gage a button of their own. I think every baby should come with one. :) She is doing great sucking her pacifier already so the speech therapist will start working with her again and she may start getting to learn how to nipple feed again. We figured that would not be possible for awhile so that is why we decided to go ahead and give her the button. The good thing though is that it was done with the trach surgery and when you take it out it just takes hours to close up so I think it was still worth getting so she can get the nasal tube out. Autumn is doing good on the home vent without any desats at all and she is not having to be suctioned much. She looks so different now. After surgery her face was SO swollen and now she has a normal little baby face and does not look so fat and cubby anymore. She's so cute--I can't wait for everyone to see her in person because pictures make her look much more bigger than she really is. She is going to start up occupational and speech therapy again and has still been doing physical therapy. They made her a little splint for her clubbed foot that she wears 3 hours on and off again. I have my meeting today with the doctors so hopefully we will be on a normal floor on Friday. It feels great each day to see we are one step closer to going home.