First time going mobile!

We put Caydence in the stroller for the first time today and were able to go for a little walk around the unit. Caydence loved it! She was looking all around and was so happy! This was the first time that she actually left her room without being sedated. We tired to escape when the doors to the unit opened but we were caught before we got to far : )

Almost Home

We have been super busy these last couple weeks! Thank goodness Tanner wanted to go stay with Nana because we have been here at the hospital all day long everyday. We are doing all of Caydence's care so we are totally prepared to go home and we have been getting trained on everything. We put Caydence on the home vent on Thursday and we were told that she has to prove for 2 weeks that she can tolerate it and have no issues. So as long as she has no issues and home nursing is in place we can go home!! It says in her chart that her estimated date of discharge is October 4th. It is so exciting hearing the word DISCHARGE! The home nursing agency has been working really hard to find us some good nurses and we actually met one of them yesterday. The nurse that we met seems like she will be a good fit, she has experience and she will most likely stick around for a long time considering she was with her last family for 13 years. They also have 2 other nurses going through the hiring process and should be ready as soon as Caydence is ready. It feels so good knowing that everything is lining up and working out the way we have hoped. I just keep telling Caydence everyday that she better be a good girl and not have any issues over these next couple weeks so we can get out of here. I can't wait to take her home! It is almost bitter sweet thinking of leaving this hospital. We have spent so much time here over the last 5 months that we have met a lot of really great people and we are definitely going to miss everyone so much. We have had our ups and downs at this place and the people here have seen all sides of us, good and bad, but they all still really care about us and Caydence. It hasn't been easy being here and dealing with this crazy situation but I think it has really made us think of things differently. Caydence has been doing really good so I think she will be ready to go home soon. I think that all the doctors are still just a little nervous to let Caydence go just because she has had some ups and downs throughout her stay here and they just want to make sure she is going to be fine. So everyone please send good vibes our way so we can go home soon! And Rachelle and James...you better hurry and get things worked out with Jayce so you can make it here before we leave. It will be so nice to see you all before going! Having you guys and Heather and Greg for support has meant so much to us and has really helped us get through this. We wish you didn't leave us so early but even from far away you have done a lot. Thank You!

Busy week!!

I wanted to give a little update since it's been a little while since I've posted anything. Things have been so busy and hectic this last week. I had to go to work on Monday and it was so nice to see everyone again after being gone for so long but I had a really hard time with it. Eric was here with Caydence and was starting the training with the trach, he did his first trach change. The whole time I was at work I couldn't stop thinking about how I should be there with him learning how to care for our daughter and also just thinking about everything that is going on. It was pretty hard to really concentrate on work when my head is obviously somewhere else. After working that one day I knew I wasn't going to be able to handle working and only being here on my days off so I ended up going to my doctor and he took me off work. I know that my job will most likely be gone when I am able to come back but really what am I supposed to do. I just hope that something will be there for me when the time comes. As soon as I got back here the training started for me. I did my first trach change with Eric being my assistant and it went really well. Eric gave me a bunch of pointers beforehand since he had already done it once and I just kept telling myself not to be nervous and to just do it. We both feel pretty confident with doing it, we are a really good team. All of this has shown us that we really need each other to be able to do this. I am so thankful that Eric is so confident and has the attitude that we can do anything because he makes me confident too. We have also started meeting with people and getting things set up to go home. The original plan was to go to CRC before going home, but we decided that we really don't want to go there and our doctor has agreed to keep us here until we are able to go home. This hospital doesn't normally send kids on ventilators home from here, they always send them to CRC first. So doing this is totally new and challenging for them. We are really making everyone work super hard to make this happen. Our case manager Lupe is amazing for getting in touch with all the right people and really trying to make this happen. We met with the home nursing agency Maxim the other day and discussed our needs. The medical teams here were trying to push that we have 24 hour nursing to go home but we stepped in and said that we refuse to have 24 hours. We finally agreed that we will have 16 hours a day Monday through Friday, and 8 hours a day on Saturday and Sunday. So the agency is working on getting some nurses hired for us and hopefully it will happen soon. Today the rep from the company that will be handling the vent and all the supplies came by to find out what all we will need and on Monday we should have the vent that she will be going home with. Also on Monday we will be meeting with a company that will be making Caydence a special stroller/chair that will help carry her vent and everything that we have to lug around with her. I can't believe how much goes into getting us home. I am so thankful for everyone that is working so hard to make this work for us. Everything actually seems to be falling into place, we just have to get the nursing lined up and we should be able to get out of here soon. We met with a really great family this evening that has a daughter that has been through probably more than Caydence has that ended up having to get a trach too. She is almost five years old now and is still on the ventilator. It was really nice and helpful talking to them about their experience with having her home on the vent. They gave us a lot of great information and even offered for us to come to their house and see how they have things set up to get an idea of how things work at home. I feel like this whole week we have been moving non stop with training and meetings and everything, but in the end it will all be worth it when we are able to bring Caydence home. I thought I was just going to give a little update but obviously this turned into a big update so now I am going to try and get some sleep. I just wanted to say thank you to everyone that has been there for us and for all the thoughts and prayers. It means so much to us. And I also wanted to say sorry to all of you at work, hopefully I will still have a job to come back to.

Adjusting

Caydene had her first trach change yesterday morning. Everything went really well. They took the sutures out and took the trach out and put a new one back in. The stoma looks like it is healing the way it should, still a little red and oozy but from what we are told it looks normal for still being fresh. Caydence did so good with the change, she didn't fight it or anything, she just kinda laid there looking at everyone around her. Now that it isn't sutured in anymore we have to be really careful with her until everything heals all the way. Eric and I have already been doing most of her care, but now we really have to do everything. We will be learning more next week on how to care for her trach and everything that goes along with it. We have already been suctioning her and last night after we gave her a good bath we changed the trach tie around her neck. It was a little nerve racking being our first time but it really wasn't hard. It really is a 2 person job though. One person has to hold the actual trach in place while the other puts the collar on and attaches it. I know that the more we do everything the easier it will be for us. Overall Caydence is doing pretty good. You can tell she is feeling better and getting back to her normal self. The first couple days after surgery were really rough, she was in so much pain and just really mad, her sats kept dropping all day and they had to bag her to get her back up. That second day we were really regretting putting her through all of this, but now I think we feel a little better about it. It is still really crazy to see and to think about her having a hole in her neck with a tube coming out of it. It's going to take a lot to fully adjust to all of this but we will. We still have a lot to learn before we will be ready to take her home. That is kinda the point of going to CRC. There we will learn how to handle emergency situations and just everything we really need to know. It kinda makes me sad thinking that we are going to leave this hospital probably within a couple weeks to go to CRC. We know this place so well and all the doctors and nurses here. Going to CRC will be difficult because we have to get to know everyone that will be caring for Caydence. It took us a really long time to be able to put our trust in these nurses here, so going somewhere completely new will be hard. Hopefully we wont end up having to be at CRC very long. We were told that the nursing company we are using has already started recruiting so we just hope they find us some good nurses and we can go home. I hate the not knowing what comes next, I am driving myself crazy with all the "what ifs". If they get us nursing fast then great, we can go home, but if it takes them a long time to find people then we are stuck. I don't know what I'm going to do if we can't go home soon. I can't believe it is already time for me to start going back to work. I go back Monday and I'm freaking out. This is the time we are supposed to be learning as much as possible about caring for Caydence and making sure we are ready to go home with her as soon as nursing becomes available. How am I supposed to be learning and really focusing on all of this when I will be gone for days at a time. I don't know how I am going to handle going back at such an important time. I guess I'll find out soon enough though.

Caydence loves her Daddy!!

pictures

I'm hoping that these pictures show up!

Caydence right after surgery

G-Tube

Starting to get back to her normal happy self.

Tracheostomy & G-Tube

Today Caydence got her tracheostomy and G-Tube. Everything went really well and it really didn't even take them that long. They thought that the G-Tube might be a little difficult because of her omphalocele but it actually was really easy and only took about 15 min. The trach took just a little longer but from the time she left her room and the time she was back in it was only about 2 hours. I'd say that was pretty good for doing 2 procedures. Seeing her whole face with nothing on it at all is so amazing! She is such a beautiful little girl! Even though she looks so good, the tracheostomy is actually pretty hard to look at for Eric and I. It's not that bad in a way, but it really just looks like someone took a tube and stabbed it in her throat and tied some tubing around her neck. We will have to get used to it which I'm sure we will in time. Everyone keeps saying that we just have to get her past this first week through her first trach change and it will look better. Easier said than done though. This is just the first step for the next however many years. I spoke with the home health agency and they are going to start trying to find us some nurses. If all works out and we get nursing we can finally go home. She should be healed from all this in a couple of weeks and I'm pretty sure we won't get nursing and everything squared away by then, so that means most likely we will be discharged from here to CRC. We really don't want to go there but hopefully if we do it wont be very long. I'm hoping that since we are getting the process started now, it wont take too long. Hopefully we can be home within a month or so. My goal is to be home by Halloween! I am pretty scared of how all this is going to work out but we are just hoping for the best. We just want to be home!

The balancing act

Eric, Tanner and I all went home the other day to get some things taken care of and to just have a little break from the hospital. It was only my second time going home since Caydence has been born. It felt so good to just be home and feel almost normal. We were able to spend some time with our amazing neighbors who have taken care of our house and animals this whole time we've been gone and we were able to just relax for a while. I even got to see my co-worker Forrest which was really nice because it has been forever since I've seen him. Even though it was great being home, I still felt guilty leaving Caydence. This has been the hardest situation to deal with. It is so hard balancing having a baby in the hospital for so long, having a 3 year old, being married, and being away from home. Even after the 4 1/2 months we've been here, it is still so hard for me to find the right balance. I feel like no matter what I do I'm neglecting someone. I hate not being at the hospital with Caydence but then again I feel horrible for Tanner and making him sit there and not letting him be a normal 3 year old. He has been acting out so much lately and I get so frustrated with him for not listening and just acting like an out of control kid, but really what are you supposed to do. He didn't ask to be in this situation any more than we did and he wants to be home just as much as we do. It was hard to come back here after going home. I was just in a really bad mood all day today, everything was getting to me. It really sucks staying here at Ronald McDonald sometimes because there are so many people around all the time. The kids here are all out of control which explains some of Tanner's behavior. And also coming back was really coming back to reality. We have no idea how much longer we will be here and that makes it really hard. Tonight after dinner though, we got together with a family that we've made friends with (Stephanie, Kade, and Tanner's BFF Wyatt) and also a new family that we've seen around for a while, and we all went to the park and blew up Tanner's bounce house and let all the kids play. The kids had a blast and I think all of us parents did too. It's nice sometimes to kinda get away and hang out with people that understand what you are going through and are going through the same thing. We were all able to just hang out and have a good time together. I wish I would have taken some pictures while we were there because all the boys were so cute together. It was what I needed, I went from having a bad day to just letting it all go and getting in a better mood. It is still just so hard being here, one moment I will be pissed off at Tanner for acting up, then I'll feel bad for getting mad at him, then I'll be sad cuz I just want all this to end, and then I could see Caydence smile at me and be happy. I feel like I'm going to loose my mind with all the different things that go through my head. And to add to it all, I have to go back to work in about a week now. Caydence is on the schedule for Tuesday for her tracheostomy and G-tube. I am pretty nervous about it but also just ready for it to be over with. I just hope we can get home nursing so we can get out of this place and go home!