April 5, 2011

Goliath

Today was a long day and another tough one for me, emotionally.  What's not tough about watching your sick baby in serious condition?  There were some ups and downs and some moments of real sadness, but I'm trying hard to not be discouraged and to remain hopeful and optimistic because I believe that is what is best for Clara and also what is best for me.  So I'm not going to detail all the medical stuff from the day.  I'll just share some of the good things that happened and then a few things for you to continue to pray for in the hours and days ahead.

Things we're thankful for:
- They made some adjustments on her ventilator and have increased tidal volumes so that the nitric oxide is getting to her lungs better now.  Hopefully it will do its job!
- They changed her entire ECMO circuit today, so she's got all fresh tubes and blood and oxygenator.  It's like getting your car serviced.  Brand spankin' new.
- The BIG goal for today was diuresis (pulling off some fluids).  After consulting with the cardiologists they feel that the best way to treat her pulmonary hypertension (better than drugs or anything else) is to get her lungs to open up.  They won't open up while they're soaking wet with fluid, so pulling that fluid off was the top priority.  They're taking it slowly because she seems very sensitive to Lasix, the drug that does this.  (Remember when she got "too dry" before surgery on the Lasix?)  She had good urine output today and it looks like diuresing is going well, so far.
- By the end of the day today, her blood gases were looking like they're moving in the right direction.
- We started milk today!  Just a wee bit, but we're excited that she's finally getting some of the good stuff!
- Her urine was very bloody this morning and we were concerned for awhile that it might be infection or renal-related, but it's clearing up a lot after changing the circuit, so we think maybe it was just the ECMO pump and not Clara!

Things to pray for:
- Continuing to get fluid off so those lungs can open up.  Yesterday, I mentioned that we felt like this was a dog chasing its tail.  Well, yesterday we were focusing on the PPHN (Pulmonary Hypertension) with drugs, but today we're going at it by a different angle - pull that fluid off so that the lungs can just do their job.  Yesterday's philosophy didn't seem very successful, so pray that today's is!  Get the fluid down, the lungs open up, the PPHN goes away and everything starts improving from there.... that's what we want to see! Pray that Clara will tolerate the diuresing and most of all that the PPHN will resolve!
- Today's echocardiogram showed some right heart dysfunction/failure.  The right side of her heart is under a lot of strain due to the PPHN and it's causing damage to the right ventricle.  We've started her on a new drug for this too, hoping to keep any further damage from happening (or slow it down) until we can get the PPHN under control.  Pray that her heart will be protected!

This afternoon I was reading to Clara from the book of Bible stories that my mom and dad gave her on the day she was born.  We read the story of David and Goliath (1 Samuel 17).  I told Clara that I believed she could be like David.  She may be small, and there may be some people who don't believe in her, but she is brave and courageous and I know she can be a fighter.  I told her that her "Goliath" was this pulmonary hypertension and I want for her to load her slingshot and knock it down.  I want for all of us to believe that God is on our side and that this battle is His.  Let's allow Him to work through the medical staff and drugs and treatments to take down this giant.  

"All those gathered here will know that it is not by sword or spear [or medicine or doctors' power] that the LORD saves; for the battle is the LORD’s, and he will give all of you into our hands."  1 Samuel 17:47

We are thankful for so much and continue to seek hope, faith and endurance for the road ahead.  Discouragement comes easily, but we are striving to stay grounded in what we know is Truth - God is in control of this battle.  He's the one who can take down Goliath.  We'll watch and wait.

16 comments:

  1. I do not know how my daughter can come home and write so well after such a long, emotional day. I am very proud of her and amazed at her strength. Hang in there, Chrissy and Robert! I love you and your sweet daughter Clara.

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  2. Sweet,sweet pictures! Hopefully a full night of rest for all!

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  3. I have been praying for Clara and all of her family...I have been praying for the Pulmonary Hypertension...but I have also been praying for Clara's doctors ~ and I will continue to do so. I have been praising God for the gifts he has given these doctors & nurses. I hope you have a good night of rest. Love from Elberton ~ Mary Ann & Chuck Martin

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  4. What a wonderful post Chrissy - you said it so well. We have continued praying for her, you all including your families, and the medical staff. We think about you all so much during the day and pray so often.
    Marissa (Liz's friend)

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  5. I wanted to share this with u..My mom use to sing this song in church this was her song...she was "little David"...

    Chorus

    The battles not mine said little David, Lord it's Thine I'm in your favor

    I'm givin' it all to you for I knew not what to do

    I'm so glad you let me see Your really all that I need

    The battles not mine, I give it to You, Lord it's Thine.

    Verse

    Little David was so small & Goliath was so tall

    Odds were just to high for little David

    So he shook off all of his load

    & with the power of God he was bold

    He said, "The battles not mine I give it to You Lord it's Thine"

    Chorus

    Verse

    Now little David he stood tall & Goliath, he seemed small

    Sweet victory had reigned for little David

    'Cause he gave the battle to One

    Who had a record of gettin' things done

    He said, "The battles not mine I give it to You Lord it's Thine"

    Chorus 2x

    Tag: The battles not mine I give it to You Lord it's Thine

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  6. I just wanted to share that you are not alone on this rollercoaster and miracles happen everyday! I pray for your little girl! Bobbi

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  7. Susie & RandyApril 5, 2011 at 9:54 PM

    Chrissy & Robert-

    Do you know that you are both the best parents Clara could ever have dreamed of? Your love for her is evident in every word you write, every picture that you take of her precious hand wrapped around your fingers. Your faith is inspiring and I, like your mom, am amazed by your strength. We'll keep praying right along with you... and you keep on loving your sweet little girl! All of our love from Concord.

    (On another note- I hope you both sleep well tonight. Getting 6 hours straight will really make a difference!)

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  8. May 6 straight hours of sleep (YAHOO!) give you renewed strength for your fight. Be encouraged by the many, many people praying for you all.

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  9. Clara's prayer warriors in Hickory are praying, praying, praying!!

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  10. Jan Hardy BerningApril 5, 2011 at 11:13 PM

    We are praying for your family and for the Doctors to have the wisdom and power from God to help heal Clara.

    Much Love to all of you

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  11. We are all praying without ceasing at the Huff House...I hope you got my earlier message about how I cry happy tears as I read your blog each day because I know that like me you will one day be praying for someone else's "precious little one" after just tucking Clara Mae into bed for the night...all of this on the week before her 14th birthday...(: please let us know if you need someone to come and sit, wash the car, mow the lawn or just rub your back...we are multi-taskers and can't wait to meet Clara Mae in person!
    Smiles,Love and Prayers,
    Beth, Rob, Keaton and Davis

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  12. Still praying hard and often for Clara, that God will just keep her (and her family!) in the palm of His hand and give her His strength to conquer these hurdles.
    Sarah Jenkins

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  13. Praying for Clara and for you all! I love your David and Goliath comparison. Clara is David- just an adorable looking version with a cute bow =)!
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

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  14. Prayers for your family and especially Clara from Pa.
    Mary
    Grandmother of Ramsey LCDH survivor

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  15. Praying for you Clara to be mighty!

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  16. Hello Hardy family. I am a friend of Derek's mom Betsy and have been praying in California for your sweet Clara. I will be specifically praying for her lungs to clear up and her heart to strengthen. I am going to share a link to a little video we made of our granddaughter Noelle singing:
    My God is so great
    So strong and so mighty
    There's nothing my God cannot do -- for you! (And for Clara!) Blessings. Cheryl Sharpley, Los Altos, California

    http://www.youtube.com/watch?v=8XU_ycQYs6E

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