Monthly Archives: January 2013

The sweet face of Congenital Heart Disease

February 1st, is the start of Heart Disease Awareness Month.  In this post I want to show you the face of Congenital heart Disease as well as share facts about CHD.

I have never shared this video with anyone except Ron and the kids.  I thought everyone needs to see the sweet face and hear the cry of a baby born with Congenital Heart Disease, in our case Hypoplastic Right Heart syndrome. This is the first and only video we have of Elijah Thomas crying and with out tubes hooked all over him. This is the video that shows the first minutes after Elijah was born and in it you can hear Ron speaking to how amazing his little boy is. It is hard for us to watch this video and see how Elijah’s little life went but I feel it is important to show that he looked like a healthy baby with a bright future ahead of him. The tragic fact is he wasn’t.

Team Elijah rocking their red!

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Congenital Heart Defect:  Facts & Statistics

♥  Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

♥  Congenital heart defects are the #1 cause of birth defect related deaths.

♥  This year almost 35,000 babies will be born with a congenital heart defect. 3,500 of them will not live to see their first birthday.

♥  91,000 life years are lost each year in this country due to congenital heart defects.

♥  The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

♥  Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.

♥  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

♥  In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

♥  More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

♥  There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

♥  In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

A lot of research has been done and relayed onto expecting mothers in regards to preventing CHD. I know for a fact with Elijah I did everything possible to prevent this horrible disease and  still Elijah was born with a CHD, one of the most severe forms HRHS. I took my Folic acid for three months prior to conception as well as my prenatal vitamins, I cut caffeine and soda out of my diet, I do not smoke, and rarely drink alcohol, and never do once I am expecting, I exercised and our families have no history of this defect, yet we were given Elijah. I believe God sent him for a reason, as I fully define what that reason is I will try my hardest to help fight CHD as well as find a cure for this horrible disease that is the #1 cause of birth related deaths in the United States. Tomorrow is national wear red for Heart Disease day and I hope you will help bring awareness as well as I to help stop this disease.

Elijah lives through our family as the voice to help others so they don’t have to experience the pain that comes along with having a child with a CHD and losing a child. Elijah has brought people together in love and support, he has brought people back to their faith, but his life still can do more. I am open for ideas on how to help fund raise for this over looked disease. If you have Ideas or would like to help please contact me.

Elijah, we love you and miss you everyday! We never stop thinking of you!

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Team Terariser in full effect sporting their red Ribbons for Baby E!

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Team Kingsley!

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Lexi

IMG_0409   It is another birthday week in our family, this time it’s Lexi’s turn. Lexi turns 11 on Monday. Though I was not there to tell about her birth and struggle she did have one. Ronnie and Pat have told me a lot about Lexi’s birth and early days. Becky went into labor but the doctors could not stop it. Ronnie explained it as rushing around and being very scared. Lexi was born at 28 weeks gestation and weighed in at 2lbs.  Though she arrived early she was born healthy and able to breathe on her own. Only assisted by a c-pap machine.  Her main hurdle’s were gaining weight, learning to suck, and monitoring her CO2 saturation. After several weeks in the Neo-Natal unit Lexi was finally released weighting in at 4lbs 2oz.

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I remember the first time I ever met Lexi it was almost 4 years ago to the date and Lexi had just turned 7 years old. We met while at our friends Jim and Cecilia’s house to watch a MSU basketball game. Lexi  was wearing a jean skirt with leggings and a pair of bedazzled high tops. She was full of energy and we both practiced back walk overs, splits and other various gymnastics moves in Jim’s basement.  I played with all the little girls in the basement,while the other adults watched the game. Every time I would try to watch the game for a moment Lexi would come and ask me to play with her.  After the party we went to the mall and to a movie with her dad and I also remember Lexi reaching up and holding my hand out of the blue. It was at this moment I remember thinking, it was going to be easy to love this little girl and so it began. The slow bond that one forms with a child that is not of your womb. The learning of each other, the trust that is formed, the love that follows.

Lexi in four short years has grown in so many ways not only the physical growth but also the emotional growth. Becoming a step sister on both sides of her family, going from being an only child for 8 years to having 5 step siblings learning to share not only parents but more  the struggle with toys and belongings. She has done a wonderful job with this and has formed wonderful bonds and friendships with everyone. She has also had her brothers births. Becky had Mason in December 2011 and Lexi seemed to be a natural at being a big sister. She loves her brother and talks all the time about the funny little things he does and never complains about anything dealing with Mason. She tells of how she would do anything to protect Mason and it truly touches my heart. I wish she would have had more bonding time with Elijah because I know what an amazing big sister she is.  Lexi is caring, and always worried about how I feel and if Stella is healthy. I can not wait until she is able to hold her sister and fall in love with her.

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I think when you are a step parent you always fear what the children are thinking and feeling. When I look at Lexi I do not fear this. I feel she has been extremely flexible, able to adapt easily and love freely. I know I was able to love her from that first day and I am glad that she has been able to do the same.

When I think of words that describe Lexi I think first of strong. She has been through a lot in her 11 years and has made it look easy. Her dad describes Lexi as resilient, and sweet, but also stubborn or the nicest person. He says she works her magical powers getting out of trouble, she knows how to work a room. But to him she is his miracle girl.  She is kind hearted and loves animals and her family.  She is beautiful and has a contagious laugh. She loves to be tickled and cuddled or have her back scratched. She could swim all day, and loves to draw. Lexi is a blessing and we can’t wait to see what her future will bring. Happy 11th birthday Lexi, we all love you.IMG_0473

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9 months

It is hard to believe that just 9 short months ago our beautiful baby boy entered this world. Not a day or even hour has passed that I don’t think of our amazing Elijah Thomas. In these past months our family has changed in so many ways. We have been forced to grow in ways that no one ever wants to but also needs to.  This makes our family love more, it makes us appreciate more, it makes every joy greater. Our foundation has become even more solid. Things that use to upset us seem so small. I think about carrying Stella inside of me and also not a day or hour has passed that I am not thankful.

Ron and I were talking the other night and I was explaining that it had been a hard day for myself in regards to Elijah and feeling the sadness. The sadness not only for what I had gone through myself but also what Elijah went through. I read a few old post and was transported back to the room and the feeling. I remember clearly sitting next to Elijah’s bed and writing about what we were experiencing.  I remember the fear, the love, the hope, the heartbreak. I remember thinking I can’t share everything because I need people to have hope for Elijah. The truth is we don’t know what would have been in store for Elijah. He went through so much in such a short time, now I do know with all my heart that our special little fighter is in a better place and he is at peace.

Now sitting back after 9 months I think of all the prayers that were said, all the well wishes, all the hope and I think our little Stella Grace has received many of those.  It’s funny now when I feel Stella move inside of me it is nothing like how Elijah did. Eli was always active always pushing back if you touched him showing his fight. Stella is gentle she relaxes when I rub my belly, she seems at peace.  If anyone tries to feel her move and places there hand on my belly she stops it’s like she already is soothed by touch. I think it is from all the love and support we have received from all of you and also from God and Elijah her angel watching over his little sister. What a comfort and it is one I will always let her know.

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Stella Grace 24 weeks

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Intention

The word intention has been put in front of me a lot lately by family and friends. Choices that others are making that leave us wondering.  It has made me have to stop and think about this word and what it means. Intention is defined as

  1. A thing intended; an aim or plan.
  2. The action or fact of intending.

But what does that mean when we put it to life. What our intentions are in relationships, as parents, friends, spouses? Intention shapes our life and we don’t even fully realize it. How we behave changes people even if it isn’t our intention to do so. Choices we make, can alter so much. We see it in movies with our friends and family, it is easy to spot from the outside looking in but what about if you are the person who is in the middle?

My intention in to raise my children to be strong faithful adults. To love their family, to treat others kindly, to be hard workers, to forgive, to help others, to treat others the way they want to be treated. Am I on path for this I wonder? I look at my life and see mistakes that I make daily no one is perfect. I do not have a crystal ball.  It is my intention to have a strong marriage build on an unwavering foundation, Ron and I take steps daily to ensure this but are we doing enough?  I ask my kids daily if they are making good choices in their life or I remind them to make good choices. Am I making good choices? All I can do is daily evaluate what my intentions are for the benefit of myself and the others around me, to trust in God to lead me.

Here is a song asking for help in these matters.

Lead Me by Sanctus Real

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