So much to be thankful for!

I guess it has been a while since I have posted anything. Things have been pretty busy around here since I am back to work. It's really not too bad being back to work and it should actually get a little better (I hope) once I start working nights next week. We finally got a new night shift nurse just in time. She is doing really well so far and we really like her so hopefully she will work out. Caydence has been doing great as usual. She is getting so strong! She can finally hold her head up all by herself and she popped out 2 teeth in 2 days! Last week was Thanksgiving and it was Caydence's first major holiday being home. We didn't really do anything special, Eric's mom cooked here at the house and my mom came by. Every year Thanksgiving roles around and we never really seem to think about what that day is really for. It's for giving thanks for all that you have, and this year, we have so much to be thankful for! Even though our year has been full of unexpected situations that caused us more stress than we could have ever imagined, it has made us live life differently. We are so thankful for all of our doctor's, nurses, RT's, family, and friends! Without all these people we wouldn't be where we are today...Home. Everyone has been so amazing to us over these last 7 months with Caydence. There are no words to show how thankful we are for all these people. Caydence is alive and doing great, and we are able to care for her at home due to the amazing staff at Lucile Packard. It's kinda nice that we have to go up there almost every month for clinic visits because we love seeing all the people that have helped us so much. I can't believe that Christmas is right around the corner now. This year has gone by so fast! I am just so thankful that we were able to bring Caydence home and she doesn't have to spend her holidays stuck in a hospital room like so many other families that we know. Every year at work we choose a family that is having hard times and we donate gifts and much needed supplies. This year, I decided that we should donate to the Ronald McDonald House and all the families there. We are participating in the Wishing Tree program so we will be donating gifts for families and supplies for the House. We will also be going up there one night and cooking dinner for all the families. While staying at Ronald McDonald we loved it when families came and cooked dinner for us so it means a lot to us to be able to go back and do the same for the families that are there now. It will be a lot of fun going back and being on the other side of things!

I finally got my photo uploader working again so here are some pics...

Caydence sleeping peacefully 

Sticking her fingers in her mouth probably going to make herself throw up

Dr. Tanner making sure sister sounds good

Wild and Crazy hair day

First time figuring out how to hold Caydence like this.

She has come to love cuddle time with daddy!

Sleeping good all sprawled out

Thanksgiving Day

Happy as always!

Big brother being silly!

Brother and sister kickin' back watching some TV

1st clinic visits

We had our first clinic visits back at Stanford on Wednesday. We first went to see the pulmonary doctor who basically just asked how things were going being at home and made sure we didn't have any issues with the ventilator or anything else. She was a little concerned about Caydence's weight gain because she hasn't gained much since we've been out of the hospital, so she had the nutritionist come in and talk to us. We were basically already doing everything that she suggested so all she really told us was to go up a couple more ml's a hour on her feeds. Caydence is still on continuous feeds through her g-tube and one of my questions has been when we can start taking her to bolus feeds, the nutritionist said that she needs to have a more steady weight gain before we take her off continuous feeds. So hopefully she will start gaining a little more weight. While we were there Sarah from pediatric surgery also came by to check on us and see how Caydence's omphalocele was looking. She was very impressed with how it looked, it has gone down so much on it's own and the new skin has grown completely over it. We talked about when we should possibly repair it and there is no hurry. It's not going to hurt to wait a little longer but I'm still on the fence about when I want to go through with it. Since she was there we needed to get Caydence's g-tube changed for the first time so we had her do it and give us a little lesson. Our next appointment was with ENT. The main issue that we are having is that we didn't know how we were going to get Caydence's trachs since Apria is refusing to get them for us. So Dr. Mesner put a scope down her trach to see if she still needed a customized one or if her trachea has grown to put in a normal size trach. But sure enough it hasn't grown that much and she is still 11cm away from using a regular trach. The only way to get the trachs that she needs is to have the clinic order them and who knows if they are even going to get paid for them. At least that is taken care of and is one less thing we need to worry about. Overall everything with ENT went good. They mentioned that she had extremely small ear canals but didn't really go into detail of how that could possibly effect her, we just need to go back in a few months for a hearing test. After our back to back appointments, we walked over to the hospital and visited with our friends in the CVICU. It felt great being back there to just visit with some of the doctors and nurses that we had spent so much time with. I think I was most excited about seeing Julie the NP because she is the one that has taken care of Caydence since her first surgery and she has been the one person that I always trusted to do what's best. Having her see how good Caydence looked and seeing how happy she was to see her meant a lot to me. Caydence was all smiles and showing off which was really exciting. We will be back next month for an appointment with GI, so hopefully we can see some faces that weren't there this time. We were also able to visit with our friend Shelley who is still there with her daughter Chloe waiting for a heart transplant. I don't miss being stuck in the hospital but I sure do miss all the great people we got to know while we were there.  I have some really cute pics I want to share but for some reason I'm having a hard time uploading them, so as soon as I figure it out I will post them..

Back to work, Back to reality

So I survived my first day back to work yesterday. It really wasn't too bad. It was nice to be able to finally catch up with everyone. I work with some really great people who really care about me. It was kinda weird talking to people about Caydence and what she is going through. I can only explain so much before people are just lost. Caydence is so complicated and what she has is definitely not something you see or hear about everyday so it makes it hard to really explain what things are like at home with her. Being back at work almost felt like I haven't been gone for 8 months. Work is still work, there are some new people to get to know, but really nothing much has changed. I do have some pretty crappy news, yesterday when I was getting ready to leave for work, I went to check on Caydence and talk to the nurse about how her night went, and the nurse was passed out in the chair in her room! I couldn't believe that he had fallen asleep on the job, something serious could have happened to Caydence and he wouldn't have even known. I was really mad but I didn't make a big deal about it because I really didn't even know what to say to him. We were already having some issues with this nurse and I had already talked to the company about finding us someone new, so I called them on my lunch break to see how the process was going and if they had anyone in mind. As I was talking to them I had mentioned that the nurse had fallen asleep and they took it seriously and said that was completely unacceptable. They called me back a few hours later saying that it was company policy and they had to suspend him until compliance does an investigation and determines if he can even work again with them. I wasn't expecting that to happen. I was willing to keep him around until we found someone else but I guess that's not how it's going to be. So now I am back to work and have no night shift nurse. Not the ideal situation. I tried to get to bed early last night and get a few hours of sleep and Eric stayed up with Caydence. I got up and sent him to bed for a couple hours before I need to start getting ready for work. Our day shift nurse will be here at 5 so Eric can go back to bed after she gets here. This was just horrible timing for all this to happen. I thought things were looking up and now I am stressing about what we are going to do. I guess it's a good thing that I won't be starting my night shifts for a little while. I just hope they get us someone fast. We need to get them in here soon so we can train them so we can start getting some sleep again. I don't think we are going to be able to do this for long. A night nurse is the most important because we need our sleep!

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.