Tuesday, January 26, 2010
I've been asked some questions lately that I think I should answer for all. I know there are a lot of questions concerning Jacob and what is going on. So, I will start with the basics. The first thing is that he is our baby boy and we love him already. We know our time with him won't be as long as we want but, this is his mission and we are trying to do the best by him. In November we went to find out if we were having a boy or girl and we found out that we are having a baby boy. After many specialists and doctor appointments later this is what we know. Our baby boy has been diagnosed with a bone dysplasia. There are at least fifty different type but, ours is known as a lethal form. The diagnosis that they are leaning most towards is probably Thanatophoric Dysplasia. Although we have been given another possible option of a diagnosis this one is the most likely and both diagnosis' will have the same outcome. We have opted not to have the Amniocentesis (needle stuck into the mother's belly to obtain some amniotic fluid) for a definitive diagnosis because deciding between the diagnosis' is not important because the outcome will be the same. We will take a sample of cord blood when he is born and do the testing then. This type of bone dysplasia effects only the long bones. (Long bones consist mostly of your arm and leg bones and the rib cage) It is nothing that Reed or I gave him genetically but, something he did when replicating his own genes(they call it a 1 in 30,000 fluke). He is missing that tiny portion of the bone gene that tells him "how long" to make the long bones. So, this will effect his arms, legs and rib cage. He has every bone that you are supposed to have but, on the long bones...his body doesn't know how long to make the bones. The reason that this is a lethal form is because it will affect his rib cage. His ribs don't know how long to grow so they stay very short. This does not allow space for the lungs. On the ultrasound...his heart takes up the space available inside his rib cage....therefore there is not space for lungs. I oxygenate him right now through the placenta and cord but, once he is born...he won't be able to oxygenate himself. There are tons of stories on the internet of babies living minutes, hours to a few living a few days. We are praying for as much time as we need, to meet him and let his brothers and his sister meet him. I want very much for him to be born alive (there are always risks that they won't make it to term) but, in general...the specialists say that they usually are born alive. We are praying that we get that time with him. He will look a little different but, I've never known a little spirit work so hard to obtain a body. It's hard to think that this living little person inside of you won't be able to stay with you. I am trying really hard to understand his mission and being his vessel to obtain a body is humbling. We love you Jacob and pray that we get to meet you. I hope this answers those questions about our sweet baby boy. We love him so much and want everyone to pray we get that precious little time with him.
Posted by Cassy at 1:39 PM
Friday, January 22, 2010
I should probably update with all the things we've been doing lately. I feel like I've been busy but, with nothing fun to share. We are trying to make arrangments for after so that when the time comes, we can really enjoy the moment we get to hold him. I've decided that at 29 it is really weird to be looking at Cemetery plots. I don't know why this is weird for me but, it's probably because if you would have asked me years ago...I wouldn't have preplanned until later in life. I am really glad that we've had great people to work with and get some things squared away because I know what it's like post baby...and I don't want to make big decisions being....well let's just say a little hormonal. So, we are trying to make calm decisions now and get some things done so that when we get to meet him...that's all we're thinking about. I am also working on a few small projects that help bring a little happiness around so, I will post those when I finish.
Posted by Cassy at 1:41 PM
Saturday, January 16, 2010
Yesterday, I wanted to do something that would give simple joy. Abbie and Kaden were my great helpers and put most of the ingredients into the mixing bowl. We made yummy homemade bread. I was excited because I had been given my grandma willard's bread pans. Everyone already had other pans therefore they fell to me. Yeah!! I know some people wouldn't be excited about old metal bread pans but, I sure was. That is something I always remember about my grandma's house is the warm yummy homemade bread. I think it even tasted better because grandma had made it! So, the kids and I made some bread. The dough was raised enough that we made homemade scones for lunch. Yum!! It's funny how something as simple as a fun memory of your grandma can bring such simple joy.
This is a picture taken when Abbie was a baby. We were visiting for memorial day (an annual event of putting out flowers on graves then a lunch under the carport afterwards) and took this generational picture. I am sad my grandma has passed because I really loved visiting her and my grandfather. They made you feel like you were their favorite and talking to other siblings and cousins....they all say the same thing. Now that's a good grandparent that makes every grandchild feel like they are THEIR special grandchild. Love you Grandma and I will cherish those old metal bread pans because it reminds me of you and the simple joys in life...and sometimes we need reminding.
Posted by Cassy at 7:44 PM
Tuesday, January 12, 2010
I had a really special experience this weekend. We went to the funeral of an infant who has the same probable diagnosis as our precious Jacob. First of all I want to say we've met some really great people through all of this and I truly believe that you meet people for a reason. The friends I've met through various stages of life have been there for me and I am truly grateful for some really special people in my life. I've met a really exceptional lady and family through all of this with Jacob and I just wanted to share a little bit of that. When we first found out the diagnosis of our baby, we were scouring the internet and books for all the information to try to make sense of what was happening. I met Brandi through her blog. I finally got up the courage to comment and she emailed me right back. Since then, it has been amazing. We've been able to email back and forth and have been able to share our experiences through our blogs. There has been so many times when something she has posted has been exactly how I was feeling. It is so special to have someone to ask those questions about what are they planning to do and other questions....just to have someone to talk to that really understands what you are going through. So much of the information on the internet is so technical and doesn't say anything about the religious side. I feel like heavenly father guided me to her and she has been such a rock and inspiration to help me through some of the difficult times. This last weekend we attended their babies funeral. As we were standing in the viewing line...Reed leans over and says...honey are you okay...you're squeezing my hand pretty tight. I was nervous...we had talked over emails and blogs but, never met in person. Reed and I wanted to go to give our condolences and to say thank you for all they had done...they truly are amazing. The first thing she says to me is "I know who you are..." and she gives me a hug. I can't tell you how special it has been to have someone like her. Everything she said to me was something that I wanted to ask but, never would have. It's like she was guided to say the things she did. She has posted the most beautiful slide show tribute of their little boy Aaron. What a special little angel. I just wanted to share how thankful I am for her and their amazing family. If you would like to see their little angel you can go to her blog...I added it to the side bar of this blog. They are the Jensen family and they are amazing people and God has entrusted them with a precious angel.
Posted by Cassy at 12:45 PM
Friday, January 8, 2010
This is the original antique door. It was a creme color with missing hardware and to me it looked like the perfect solution to my message board problem that I had wanted to do something about for a while.This picture was taken in the first part of November. Actually if you look at the date, it was two days before we found out about our baby. Needless to say, this project was ready to be started but, due to unforseen circumstances it has sat against the garage wall for two months. Well, it has finally happened. I actually had a "creative bug" for a day....which hasn't happened for a long time. It's probably because of all the days we sat around lounging, playing games and watching movies during the new year's holiday. I was ready to actually do something. I took down the Christmas decorations and was actually inspired to do something. Reed was really excited that I was beginning to act a little bit like my old self. He was willing to go to Home Depot and get some paint with me and help me with the parts of the project I couldn't do myself. Such a great husband!! He probably was so excited to see a little bit of me come back to life.
This is what the final project looked like with all the book bags hung up and all the stuff back on the magnetic board. If you want to see the entire project with how-to steps, check out my design blog. I only blog personal stuff on the family blog. So, most people don't know why I dropped off and haven't done my usual projects. But, this project was really fun and I've wanted to do for a while. Hopefully it won't take me another two months to do something else.
Posted by Cassy at 4:39 PM
Thursday, January 7, 2010
This year we had lots of snow in Vernal for Christmas. We went sledding/tubing twice in the few days we were home. The first picture of the men racing on runner and plastic sleds. Reed has Kaden, Grandpa has Kai and Dustin has Logan. It ended up being a short race....all sleds went different directions....it was still really fun to watch.
Abbie was brave and fearless. All the girl cousins went on a tube together...they laughed the whole way. Isaac and Kaden started playing in the snow and I got a rare picture of them sitting still.
Reed making us laugh like usual...always lightening the mood. Kaden loved riding the runner sled with dad.
Abbie and Reed were fearless as they took the hill on the tube like tricksters.
I love this picture of Kaden and I. I rarely get such good photos of us both. Kaden had the idea for the picture...."Mom, take a picture of us together..." Too Cute!!
Isaac and Abbie raced quite a few times...once they were up at the top...they were quickly back to the bottom to do it again.
Santa brought the kids a bounce house...and all the cousins got to enjoy it. It barely fit in the large room downstairs in my parents house. The kids had a great time but, we had to take turns because there were too many cousins to all go at once.
Abbie asked for a bike and chocolate chips for Christmas. Funny request huh? She got a stuffed animal puppy to go on the extra little carrier on her bike and guess what she named it? Chocolate chip!! Isaac got some star wars figurines and his beloved GAMES!! He is in heaven for sure. I'm glad it's being used as a reward system...he sure is motivated. Kaden wanted bad, bad, baseball (maybe batter, batter, baseball) but, even santa couldn't figure out that one. It's a good thing he loved his remote control car and kids educational laptop. Santa sweated a few bullets for sure!!
Christmas was great this year and the kids had a great time with their cousins. Thanks everyone for making it such a great year to be home!!
Posted by Cassy at 1:24 PM