Welcome to our journey of love, living in the face of loss and just plain living. We've experienced the greatest loss a parent can face--the loss our our baby daughter, Sylvia. She flew to Heaven due to complications of congenital diaphragmatic hernia (CDH) on 2/26/09. We have two "Earth Angel" children, Will and Stella. They have been a great help on this journey. We live a blessed rich life in spite of our loss. We are lucky to be parents to such special children. They are our life. Welcome to our life!

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Thursday, November 18, 2010

We're still here!

Hello world!
Yes we are still here! Life just gets so busy sometimes. Our life is definitely busy in the good sense! Will and Stella keep us hoppin'! For Halloween, Will was Woody (from Toy Story) and Stella was a butterfly. They were so cute! They even came to my work for our Halloween party. The residents LOVED them! Stella even let one of them hold her! She's a total mama's girl lately. I admit that it makes me feel special--like I'm a super hero or something. She continues to be such a joy. She's happy most of the time only fussing when she's hungry, tired or wants her mama. Will is a good boy too, but he definitely knows how to try us! There are many battles of the wills with him. He is so stubborn, but so lovable also. He's a little smarty pants too! A couple days ago, he asked me several times to get Jack out of the Jack in the Box so he could see his shoes. I kept saying that Jack didn't have shoes so he couldn't see him. He insisted that yes indeed Jack does have shoes as they were pictured all over the outside of the box. Darned Jack in the Box. How was I supposed to explain that one to him? :) He also noticed the dense fog the other morning. He looked outside and asked, "Mom, What's going on out there?" I tried to explain that fog is made of water then he couldn't understand why I didn't have the windshield "wipies" going. Nothing gets by him! Will is thriving because of school. He knows his letters and numbers very well. He sings songs. He tells me what he learns about as well as the food he eats there. He tells me about nap time although his teacher insists he never naps. No wonder he is the way he is some evenings:)
Stella--She can go from laying down to sitting/kneeling to standing by boxes/stairs now. She loves it! She babbles. She continues to Army-crawl everywhere. I don't think she'll ever do the traditional crawl although she does get up on her hands and knees. She rocks in that position and that is about it. She eats the food we eat now. It's nice not having to buy baby food anymore! She remains on formula, but enjoys solid food much better. She doesn't really understand the sippy cup yet, but we're trying. Everything goes in her mouth! If there is a tiny piece of trash on the ground, i.e. bit of food/paper/you name it, she will find it and try to eat it!
Will and Stel play together very well! Their interactions are priceless. He likes to hold her in the mornings. He kisses her, gives her toys and plays with her as much as he can. She adores him. Sometimes, when I'm not home, she cries if he leaves the room! No one can get Stella to laugh like her big brother!
Tonight I talked with a researcher from Columbia University. They are doing a study on causes of CDH. I signed a release for them to obtain some of Sylvia's tissue samples from the University of Iowa. It was hard because for a minute I thought of what is done during an autopsy. The thoughts of those things being done to her upset me, but I realize that bodies are only our earthly shells. She had been in Heaven for hours at that point... Anyhow, I am happy that we may be able to help others through this study. They will do a very comprehensive analysis of Sylvia's genes. They are also going to study Andy, Will, Stella and myself through our blood samples. This study has already found that in 20% of CDH occurrences, there is a genetic link. However, many of those 20% have other abnormalities. (Sylvia had none.) They will let us know if they find anything significant in our genetic makeup that our family needs to know. As technology advances, they will continue to study us. So, in several years, we may even hear something. No news is good news though. As long as we don't hear anything, our genes are all fine and Sylvia's CDH was an isolated incident meaning it did not occur because of her genetic makeup. This is what I hope. This is what the University of Iowa has already told us. However, Columbia's analysis is much more involved. I'm a little worried they may find something. I pray they do not. However, I do hope they find a reason why CDH occurs. Actually, maybe it is treatment of CDH that peeks my interest even more. If we can't isolate a cause of CDH, we need to find better ways to fight it. It is taking way too many children's lives.
Andy and I are well. Work is busy for both of us. With this economy, we are just glad to have jobs at this point! The holidays are approaching. We are very excited to experience Stella's first Thanksgiving and Christmas! The Santa threat is working like a charm for Will! Haha:)
Hope you all are well!


  1. so enjoy reading your blogs, Beth. You are such an awesome mom. God Bless you
    LOve ya,

  2. Thanks for blogging! I'd been checking for updates every week or so. : ) I always love to hear what's new with the kiddos. I can't wait to see them at Christmas. I feel like I hardly saw them when you were in Sioux Falls, and I'm especially excited to see all the 2010 babies together! You'll have to tell me more about the study you're doing... I think it's really cool that you're participating. (By the way - Azalea wore her "My Auntie Is #1 shirt today!)