Friday, July 31, 2009

Our Family in Crisis


My sweet, beautiful, 16-month old nephew (Eli) has been diagnosed with a congenital heart defect. OPEN HEART SURGERY is required, and sooner rather than later. He is in the early stages of heart failure. At almost 17-months old, the cardiologist was shocked that he had made it this far and was as "healthy" as he was. It isn't uncommon for babies to die by 3 or 4-months of age if the condition goes undiagnosed.

WE ARE IN SHOCK, no one more so than my sister and her husband. In hindsight, all of the signs and symptoms were there, but b/c they presented individually, each could be attributed to something else. At a recent weight check (Eli is very tiny...all makes sense now) his pediatrician heard a loud murmur undetected before. A pediatric cardioligist confirmed the worst...

Eli is very sick. He has been diagnosed with Atrioventricular Canal Defect. Basically, he has a large hole in the center of his heart between the upper and lower chambers. In addition, his tricuspid and mitral valves that normally separate the upper and lower chambers of his heart did not develop normally. Instead, he has one large, single valve forming over the area of the hole.

This heart defect is repairable, but from the research I did at the American Heart Association website, he will also need valve repair and possibly subsequent surgeries. At this time we do not have a surgery date. My sister must first meet with the sugeon and get on his surgery schedule. We do know this...surgery will be required before the end of August.

Since I began blogging, my sister and I have been shocked at the number of families whose babies/toddlers/children have been touched by crisis whether it was heart defects, cancer, accidents, etc. We constantly call each other to say, "have your read so and so's blog? Oh my gosh, how is their family coping?" Now, we are that family.

I plan to travel to St. Louis to be with my sister, her family, my parents, and her in-laws. I will travel without my own little ones so that I can focus on Joy, Jeff, Alister and of course, Baby Eli. I ask you for your prayers on behalf of Eli. Thank you.

20 comments:

  1. You will be in my thoughts and prayers. Please keep positive and know that with the technology we have now days, they are so well equipped to repair and manage these sorts of things. Children are such strong little beings and it is often mommy and daddy that go through the most difficult part, because emotionally, is there anything worse than seeing our children in distress?
    Please keep us posted my friend,
    xo

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  2. Prayers going up for your family. Keep us posted.

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  3. hat a shock for your family. Thank goodness they have caught this now before something worse happened. I hope that baby boy gets the surgery he needs quickly so that his little body can start to heal. Your family will be in my prayers, God Bless.

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  4. I will be praying for your nephew, How scary.

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  5. My thoughts and prayers are with you and your family at this time.
    Please have a safe journey to St.
    Louis too. Letus know how things develope.

    Bless you---

    Melinda

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  6. Oh my...I'm so sorry to hear about this. I will be praying for Eli and having others do so as well!

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  7. Praying for total healing!
    Big Hug...Julie

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  8. My goodness! How scary for you all. We will definitely be praying lots for Eli and your whole family. Please keep us updated when you can.

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  9. I am so sorry for this challenge in your life! It really hits close to home since my baby is 16 months old, and I can't imagine having to deal with such a scary diagnosis with her. My thoughts and prayers are with you. Hang in there!!!!!!

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  10. Praying for you...knowing how much I love my nieces and nephews (and sisters/brother), I know how huge this must be for your family. I'm so sorry. And thankful for the amazingness of medical technology, given to us by God.

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  11. You and your family will be in my thoughts and I wish Eli the best of luck and a quick recovery!!!

    If you have a chance, come by and say hi!

    Take care,
    Aimee

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  12. What terrible news...Will pray for your nephew and family...And I agree with you: Seems like I've seen so many similar stories about sick babies lately :(

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  13. Oh my dear! Bless his heart! And your sister and her hubby and all of your family!!!!! This is really hard (check your email). I'm here for you if you need me! I am sending prayers and will Add him to prayer list. Safe travels for you! Hugs and Love!

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  14. oh dear, I am so sorry to hear this.
    I have been so out of it lately. How scary this is. News nobody wants to hear.

    I am praying now for your family.

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  15. Prayers, of course, for you and your family - how blessed they must feel to have caught it in time.

    so little he is

    please keep updating his condition for us okay?

    and thank you for your condolences....it's been a very rough week -

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  16. Will include him in our daily prayers. Keep positive thoughts going. He's made it this far, light will be right around the corner! My heart goes out to your family, I can only imagine!

    Hugs,
    Nancy

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  17. Der Valerie, we are praying for little Eli. God is great!
    With love from our parsonage.

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  18. I'm curious as to whether your sister or her husband served in Desert Storm? Prayers and thoughts will be with you. It was the kindness of blogging strangers that kept my heart soothed. Funny isn't it, that it has that effect/

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  19. I will be happy to pray for little Eli and his family. Please keep us up to date on this precious little man!
    XOXO
    Joni

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Thank you so much for taking the time to comment. Your kind words are appreciated! As Mother Teresa said, "Let us always meet each other with smile, for the smile is the beginning of love."

Valerie