One Year Ago...

At this time one year ago Caydence got her trach and G-tube. The decision to move forward with the tracheostomy was the hardest decision we had to make throughout the whole hospital stay. It was extremely scary sending her in for that procedure "knowing" how it would effect the next couple years of our lives. We thought we had a good perception of how things would be having an infant with a trach and on a ventilator, but we really had no idea how things would be. It's been a whole year now since we started this journey and I'd have to say its a lot different then we thought. It is still very difficult dealing with all the day to day duties we have to do to keep Caydence as healthy as possible and to keep her moving forward developmentally. This little girl surprises me so much with all she can do. She really doesn't let anything hold her back. Next month will be one year since we brought her home from the hospital. We were told before leaving that babies like Caydence will most likely be in and out of the hospital constantly for infections and other things, so when we got home we set a goal that we would make it at least one year without having to be readmitted to the hospital, we've made it this far and I'm confident we will make it to our year mark next month. 

Here are some pictures from last year after her trach and g-tube surgery.

This was the first time we saw her complete face with nothing on it. Beautiful!!  

Look at those cheeks!

And this is her today!! :)

Summer Fun

Look who finally made it out on the boat!!

The Happiest Place On Earth!

               

While Caydence was in the hospital for so long last year, we met a couple families who we really hit it off with and became good friends. When those families took their babies home and left us at the hospital we agreed that the following summer we would all pack up our kids and travel to the happiest place on earth...Disneyland!! It's hard to believe that it has already been almost a year since we made those plans, but it has, so a couple weeks ago we all traveled to Anaheim and had the best vacation ever!! We are so lucky to have met such great people. We had adjoining rooms at our hotel with the Smith's who have boys that are close in age with Tanner so from morning till night those boys were inseparable and had so much fun together. And of course Caydence and her future husband Austin had fun together too. Caydence did so amazing the whole time we were away from home! It was such a great feeling seeing how happy she was to just be a normal kid going to Disneyland and riding rides. I was pretty surprised how many rides we were actually able to take her and all her equipment on. The staff was so great to us and really made sure we all had the best experience possible...which we did!! 

It is so crazy looking at what we all have been through this last year and looking at where we are now. Caydence has been doing so great since coming home from the hospital. She has really shown everyone what a fighter she is and that she can make it through anything.

                   

                                      On the road                                                       Just getting to Disney

                                                                 Buzz Lightyear ride

                 

Having fun at the pool

 

                                                   

                                         

                                                                           

The future Travis Pastrana...

ONE YEAR OLD!!!

Ok...I know I am a little behind on this post. Caydence turned the big ONE on the 19th of this month. I can't believe that it has already been a year since she was born. It is so crazy looking back on this last year and all we have been through with this little girl. All I can really say is that she is one tough cookie! She amazes me everyday! I really try not to think too much about all we had to go through this last year because it most definitely has been the hardest year of our lives. Never in a million years would I have imagined any of the things that we had to deal with. I can remember almost everyday like it was yesterday if I start thinking about it. I really try to just think about all the good days that we had during our almost 6months in the hospital. Even though this year has been so challenging, I can say a lot of good has come out of it. First of all, we have one amazing little girl that we know can make it through anything, we have a wonderful little boy who has handled all this almost better than us, we have seen what great nurses and doctors can do, we have seen how caring and generous people can be, we learned so much about everything, and we have made some lifelong friends that can relate to us in a way that even our closest family members can't. After finally getting out of that hospital and bringing Caydence home, things have still been super challenging but I'd say we are handling it pretty well. Our attitude toward our whole situation is that we do what we have to do to make sure our kids are taken care of  in the best possible way. Caydence has not had to be readmitted to the hospital for anything since we have been home which is great. She has progressed so much too. She is really starting to show her personality now, and she is such a spoiled little girl. She can sit up so good by herself now and she is working her legs out in her jumper everyday so hopefully she will be able to start standing and walking soon enough. We are even getting ready to take her on her very first vacation...Disneyland!!! We are meeting up with two of the families that we became friends with while in the hospital who also have one year olds and other kids. We can't wait to see them again since it has been a really long time and we all live pretty far away from each other. Caydence should have a great time, who doesn't love Disneyland?? I'm a little worried about Eric and I just for the reason that we will be having to split the nights watching Caydence so neither one of us will be getting much sleep. It's ok though, we are ready for it!  For Caydence's  birthday we had a nice party at a park by the river where we live and it turned out great. All our family and friends were there which meant a lot to us that they were able to share such a special day with us. To me, celebrating Caydence's birthday wasn't the only thing I was celebrating, Caydence turning one also meant that we made it one year as a complete family. We are so grateful that we have our kids and we are all doing well. We still have many challenges ahead of us but if we were able to make it through this last year then we can make it through anything!!

Milestones!!

As of tomorrow, it will be 5 months since we have had Caydence home from the hospital. Time has gone by so fast! I can't believe we have been home 5 months and next month Caydence will turn 1 year old! Since bringing her home from the hospital, Caydence has progressed so much. Within a month of being home she was able to hold her head up on her own, then she started popping out teeth like you wouldn't believe, she smiles and laughs like crazy, she went from not being able to get a sound out to screaming just as loud as a normal baby, she knows how to give high 5's and wave HI, and now she is sitting up all by herself. It is amazing how much she has grown up over these last 5 months! She has put on some weight too, she is now 12.9 lbs and 25 1/4 in. Even though we have our days (OK, many many days) that all this is a lot and we are going crazy, I can always look at her smile at me or do something new and forget about all the bad and think about what is good. And what is good is that she is doing so great. Before we left the hospital I remember everyone saying to expect being back quite a bit for this or that because most kids like her end up back in the hospital pretty often. Well, I think 5 months of being out of that place and not having to be readmitted is something to be proud of!

I think she's proud of herself too!!

ER visit...for Tanner

Last night after we just finished up doing Caydence's bath and trach tie change, we were getting things put away and cleaning up when Tanner came running into the living room and tripped and smacked his head on the coffee table. As soon as Eric saw it he started yelling that we needed to leave and go to the hospital. At first I was like ok, calm down, can't be that bad, I grabbed a rag and put it on Tanner's head to stop the bleeding as Eric ran off to get shoes on to leave, as soon as I moved that rag to actually look at how bad it was, I think I just screamed. It looked like he had a huge chunk missing from right between his eyebrows. I couldn't believe how bad it actually was. You could see all the tissue inside and it just wasn't a pretty sight. As soon as we got shoes on we jumped in the car and headed to the hospital. They got us right in and said he would need stitches. They first put some kind of numbing cream on it and wrapped his head up which really helped. They asked if we wanted to sedate him for the stitches which we said yes and it was a good thing that we did because poor kid ended up getting 5 stitches on the inside and 10 stitches on the outside. He was a champ the whole time. They put an IV in and gave him cetamine for sedation. The doctor did a really good job stitching it up and getting the line really straight. We had to wait and hour after it was done just to make sure he came out of the sedation ok. He did really well and we were out of there. I couldn't believe how well he did with everything from the time it happened. He hardly cried at all. Tough boy! I hope he will listen to us next time we tell him no running in the house. We thought we had our hands full with Caydence, never thought we would end up spending time in the ER with Tanner. 

Finding the fun in every situation!

After getting his IV

He said he looked like a transformer.

Right after they gave the cetamine. (can you tell?)

Getting ready to start stitching.

(This picture doesn't do justice for what the hole really looked like)

Finally home in bed sleeping. I don't think he's going to feel too hot when he wakes up.

Exhausting life!

We have been so extremely busy over this last month that I just haven't had the time or really the energy to post anything. This crazy life we are living is really starting to catch up with us! I feel like we never have a moment to just relax or do anything anymore. Our whole world right now revolves around Caydence, she requires all our attention all the time. She has some sort of appointment just about every week ranging from appointments up at Stanford (which is a 3 hour drive), appointments at home (PT/OT, speech therapy, developmental teaching, ect.), and normal pediatrician appointments for immunizations. We also are constantly dealing with our nursing situation which really sucks. We haven't been able to keep more than one nurse at a time (if even that) since we've been home (we should have a total of 3 nurses, 1 full time night shift, 1 full time day shift, and 1 part time weekend). We have gone through probably 4 different nurses since we have been home from the hospital. I'm sure those of you that know us from the hospital are probably thinking "you guys are just difficult, there's no wonder you can't keep a nurse for long", but I assure you that it really isn't our fault :) It has been so hard on us lately because we are both working and not getting any sleep. I feel like my days run together like one super long day that never ends. I don't know what we would do if we didn't have Eric's mom here with us because she has been a big help by taking on part of the night shifts when we have no nurse and giving us breaks during the day to collect ourselves so we don't go crazy. His brothers and sister have been great too by helping keep Tanner occupied during the days. I feel so bad for Tanner because he has really been put on the back burner which is horrible. He went from it being all about him to it being all about Caydence. We try to make time for him and make him feel special but it's just really hard. He has been acting out so much lately which I really can't blame him, but it makes it even harder. I feel like I am constantly yelling at him for something. We never really thought that this would be this hard. I keep telling myself that once we get good nursing in place everything will kinda pan out and get better but I honestly don't think that's going to happen. We are doing the best we can do with the situation we are in but the honest truth is...this sucks! Caydence has been pretty sick over the last few weeks which has made things worse. She is finally starting to get over it with the help of antibiotics and extra breathing treatments but I can tell it's still lingering around. On a more positive note... Caydence has actually been progressing very well developmentally. She is catching up pretty fast. She is such a happy baby for the most part. We taught her how to give high-fives which is super cute! I love Caydence so much but I just wish she didn't have to go through all this and I wish we didn't have to go through it either. We are taking one day at a time as always and just hoping that this won't be forever.

This is what it looks like when I take the night shift with Caydence.

Tanner always wants to sleep on the couch and party with us.

Thanks for the hat Christina!! It fits her perfectly.

She looks like a little doll!

Tanner loves hanging out watching TV with his sister. He really is a great big brother!