One Month Home!!

As of yesterday, we have been home for 1 month!! I can't believe it has already been that long. Time really goes by so fast! It is still crazy to me looking back at all we have been through since Caydence has been born. It is just amazing what this little girl has been through in her short life. It is great to have her home and doing well but she still has such a long road ahead of her. We met with a speech therapist a couple days ago to talk about oral feeding. Caydence is still on continuous feeds through her G-tube. The therapist gave us some things to do with her for oral stimulation. She has such a super sensitive gag reflex that basically anything you put in her mouth is going to cause her to spit up. We need to work on that and get her used to things going in her mouth and not having it be a bad thing. That was the downfall of having the breathing tube down her throat for so long. It's still going to be some time, but hopefully if we get her sensitive gag under control, we can have a swallow study done and as long as that goes well, we can start introducing food through her mouth. We already know that she will never eat from a bottle, but hopefully we can get her eating something by mouth. Overall Caydence has been doing really well. We took her to see her pediatrician the other day just for a check up and she was amazed that we didn't have any concerns and that Caydence was doing so well. Our only concerns right now are just with our supply companies and trying to get the supplies that we need. Our DME company, Apria, is refusing to supply us with Caydence's trachs because they are custom made and cost a lot of money, so now we are dealing with trying to find a company that can get them for us otherwise we have to switch to a completely different trach. I feel like I am constantly on the phone with someone trying to get things worked out. I guess this is just the life of having a "medically fragile child". This life is really starting to feel "real" now that it is official that I am going back to work tomorrow. It is going to be weird going back and having to be away from Caydence for so long. Leaving Caydence is totally different than when Tanner was a baby and leaving him. I thought I was bad when I had to go to work when he was 3 months old, but at least I knew he would be OK. With Caydence, I know she will be OK, but I also know how fast she would go downhill if something were to happen. I just have to get through this next month and then I will be starting to work night shift which will be so much better. I will be working 7 days on and 7 days off. It will work out great since we have a night shift nurse. So even when Eric goes back to work next month we won't have to worry about who's going to take care of Caydence. That position came at great timing because I really didn't think that I would be able to work as much with the shift I had before and we weren't sure what we were going to do. Now I can work and still be home with Caydene more often. Everything seems to be falling into place but I know our real test will be when both of us are working. So for us, we really take everything day by day and just hope it all works out.