April 10, 2011

Fruit of the Spirit

But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.  Galatians 5:22-23

I can tell how many people are praying right now, not only for Clara, but for me and our family.  By all logical reason I should be feeling exhausted, frustrated, depressed, angry, sad, anxious and more.  But instead, the past few days have truly been filled with love, joy and peace.  Lots of peace.  I know the only way that is possible is through the Holy Spirit.  God has calmed and protected me during this difficult time and allowed me to experience such love and joy for Clara, has filled me with patience for doctors and procedures and treatments and tests, and has allowed me to have a deep sense of peace during a tumultuous time.  I am so thankful for His Spirit watching over me.

We have had the calm and low-key weekend that we prayed for (KNOCK ON WOOD!).  Clara has stayed stable throughout the weekend, with a few adjustments here and there, but no major setbacks.  One of the respiratory therapists told us that being on ECMO is like a dance.  You tweak one thing just a little and it sends something else out of whack, so you have to adjust that just a little and then another thing gets out of balance, so you have to address that.  It's a constant "two steps forward, one step back" kind of move.  As long as the end result is progress in the right direction, we're trying to take each little setback along the way in stride.

Friday's echocardiogram showed the first improvement in heart function and pulmonary hypertension.  That chest x-ray also showed increased aeration of the lungs and a reduction in the haze and fluid build up there.  Saturday we had to back off diuresis because the pump kept cutting off.  This morning, they resumed the Lasix, but Clara's urine output did not pick up.  In fact, it was much much lower than it has ever been.  The doctors aren't totally sure of the reason for this.  Today's echocardiogram showed that her heart was very full, so she doesn't appear to be "overdry."  However, her systemic blood pressure was also much lower than it has been (although still within the acceptable range), so one theory is that her kidneys may be getting "tricked" into thinking that she's dehydrated when she's really not.  Today's echocardiogram also showed more improvement with both her heart and pulmonary pressures.  The official report said, "Right ventricular function appears improved from last study (4/8/11)... Normal right and left systolic function."  This is the first time we've seen the word "normal" in quite some time!  So, the cardiologists have recommended that we begin weaning Clara off of two drugs she's on right now: Milrinone and Flolan.  Both of these were to address her pulmonary pressures, so if the doctor is comfortable weaning off of these, we are assuming that means they are happy with her progress towards addressing pulmonary pressures.  Hopefully tapering off on these drugs will also bump her systemic blood pressure back up again some, get those kidneys unconfused, and allow us to continue diuresis.  Today's chest x-ray showed that the big gas bubble in her belly from Friday and Saturday is much much smaller and we resumed breast milk feeds again (those were stopped yesterday due to the stomach bubble).  There did not appear to be much change in the lung aeration from yesterday.  Other than those changes, Clara's stats stayed fairly stable throughout the day and she was peaceful (thanks to an increase of sedatives).  Her tidal volumes (how big a breath she's breathing in and out) are also slowly increasing, so we pray that will continue, allowing oxygen and nitric oxide to get into her lungs and continue to help open things up.

There's the medical update.  Here are some photos from the past two days.

Here's Clara with her two adoring grandfathers:

Daddy Bob
Big Daddy
This little girl has this big man wrapped so tightly around her little finger already...
 Saturday's bow of choice was hot pink with black polka dots:

Sunday we switched to green with sparkles:

Today Dr. Pranikoff pulled off her surgical glue and tape to reveal a beautifully healing incision.  I'm not even sure it's going to leave much of a scar when it's all said and done!

We had to put a mitten on her right hand because she was getting too close to her ECMO catheters and we don't want her messing with those!

Love these little piggies.
 I was told there weren't enough photos of Robert on this blog, so I'm remedying that situation.  This man is so in love with this little girl.  Can't you see the smitten look all over his face?

Robert reading Beatrix Potter to Clara.
And this is love.

Robert loves to smell that sweet little baby head

We remember where we were a week ago today – it was the beginning of four really hard days of steps backwards.  We are so deeply grateful that a week later we seem to be moving in the opposite, positive direction.  We are more acutely aware of what a gift each day, each hour, each moment is and we are thankful for every second spent with our precious daughter.  We ask that you continue to pray for her, continue to plead with God for the miracle that has begun.  Specifically, pray that she will tolerate the weaning of those two PPHN drugs, that she will begin peeing again, and that diuresis will allow her lungs to open up and fill with air.  Pray that her heart will continue to improve and be protected from the damage of high pulmonary pressures without any permanent damage.  Pray that she will continue to show progress on her chest x-rays, echocardiograms and tidal volumes so that we can begin to think about weaning off of the ECMO machine.   Continue to pray for the medical staff who serves us.  Most of all, continue to praise God for the wondrous work He has begun in Clara and continue to ask that He might bring it to completion.  We are thanking God daily for you – we are humbled and amazed to be surrounded by such passionate prayer warriors.  Thank you for your love for us and our precious baby girl. 


  1. Thank you God for some positive steps forward for Clara. It is so heartwarming to see you two goo goo about that sweet baby! Absolutely love the hairbows..what a fashionista she is! Will continue to pray that she continues to improve. Let her rest in God's hands while you guys rest yourselves...

  2. Chrissy, you would make an excellent nurse with that report! I am excited to hear her progress, esp. her heart function and pulmonary pressures and will continue to pray for our Lord to continue the healing process He has begun. I am also thanking God for giving you His peace as only God can do.
    Joanne and family

  3. Praise the Lord!! I will continue to pray for sweet Clara, and you too! So happy for these steps forward. You two really are wonderful fantastic parents! You continue to inspire and encourage me in my walk with the Lord, God is using you and baby Clara in such big ways. Will continue to pray continuously.

  4. Praying for sweet Clara! Thank you for updating us and being specific with prayer needs. We will continue to pray for our Lord and Savior on Clara's behalf. LOVE and HUGS to all of you, Mary Ann & Chuck

  5. Praise to Him who is able to do "immeasurably more than we can ask or imagine!" (Ephesians 3:18) Love to you and especially to the baby in the green bow with sparkles! She is so stylish! :)Karen K

  6. I am one of the many "friend of a friend" who came upon this blog, and I have been reading and praying daily for your family, and your beautiful little girl. I just wanted to leave a note and let you know that even though I have never met you, Clara is in my prayers all throughout the day. Thank you for sharing these updates with us! I am so encouraged by her progress!

  7. So grateful for a stable weekend..praying Clara into a week of improvements!

  8. This song reminds me of Clara Mae every time I hear it! His light shines through her, and it is touching all of us!

    "And the Birds Sing" by Tyrone Wells

    Sunshine came out today
    And it's shining all over the world
    Shining all over the world.

    Sunshine came out today
    And it's shining all over the world
    On every man, woman, boy, and girl

    And it sure feels fine
    When the sunshine shines
    Warms your skin
    And your soul within.


  9. Slow and steady win this race - though it takes every ounce of patience. So glad you all can feel the prayers and Clara is improving. We take what we can get! Love the hair bows!

    Still sending thoughts, prayers and Lung Function Chants,

  10. Reading these posts have become my routine, as has praying for this sweet baby. I am so thrilled that sweet Clara is moving in a better direction. We will continue to lift her up to the Lord, and keep anticipating her wonderful healing. We love this baby so much, and I speak for so many of us, who pray for her constantly, and feel bound to each of you through the power of prayer. God has given us such a gift in the ability to pray for each other, and through that gift, we are also able to just cherish each other in a way that is beyond my human understanding. So, tonight and all through the days and nights ahead, you two sleep knowing that so many of us are praying, hoping, and waiting for our girl to be completely healed, but above all we are praising the Lord for her life, and His obvious hand in yours. Your testimony has impacted my life in a profound way, and I will always thank God for the chance to pray with you for this amazing baby girl, Clara Mae. love, Rebecca Hethcox Smith

  11. Beautiful, beautiful, beautiful... beautiful Girl. :) The lyrics from John Lennon's song "Beautiful Boy" kept going through my head as I read this and saw the pictures of Robert (and Big Daddy, and Daddy Bob) doting on sweet Clara. We'll keep sending prayers of healing and peace your way. Much love... Susie & Randy


  12. We lifted Clara Mae in prayer today during our church's worship service in Knoxville, TN. I went to school in Elberton & my mama is still there.

    Our sermon today was about Lazarus being raised up & how Jesus told the people to take off his bandages because he was healed. The pastor handed out a gauze bandage to each of us in the congregation as a physical reminder. I thought of baby Clara as I held onto mine. In light of that, I am so happy to see that today's blogpost features her newly unbandaged incision that is healing so well! May her whole body continue to prosper & grow strong.

    God bless Clara, Robert, your whole family & you. Clara's struggles make me love on my kids more tenderly & inspire greater appreciation to God for the blessings of their health. Thank you for sharing with us on Clara's & your journey. From one parent to another, God bless & keep you always.

    "...he shall gather the lambs with his arm, and carry them in his bosom, and shall gently lead those that are with young." -Isaiah 40:11

  13. I love you Clara. I can't help it. I'm praying for you every day. Precious girl...God has made you to be such a blessing for so many.

  14. We are so greatful to God for a much quieter weekend for you all. We pray about you all often and ask God to let you bring her home.
    Annette and Randy

  15. I've never prayed so hard for anything!!!! I will continue to pray for you sweet girl.sending love, prayers and hugs from PA!
    Lindsay Clark

  16. We continue to pray and are so encouraged that our prayers for YOUR peace and joy are being answered. You see, we loved you and your families long before we met Clara Mae. Now we love you all!!

  17. I continue to pray for your family, and I am so encouraged by the progress. Thank you for sharing the beautiful new pictures of Clara. I look forward to more good news in the days ahead and more beautiful pictures.

  18. Loving ALL of you is so easy to do. I think that GOD feels the same way. The joyous Easter season that is almost upon us, will be even more of a miracle as we watch HIM work over sweet baby Clara. Better go out and buy that first Easter basket .... this little girl is going to use it for many, many Easters to come!!!!

  19. As always prayers from Pa.

  20. Hi! You don't know me, but Kelly Beth Smith (a law school friend of mine) is friends with one of your students. She passed this blog along to me for one reason in particular: I was on ECMO for 12 days last year at Baptist when I got a rare bacteria in my blood stream which caused my lungs to fail. I was totally healthy & 23 years old at the time. It was extremely hard on my family (and me, recovering afterwards, emotionally), but today I am fully back to normal. I'm even running in a 5k on Saturday. I cannot say enough about the ECMO team at baptist. They saved my life, and there is no better place your baby could be right now. I will say a prayer for your baby and your family. I've been there, and my family has been there, and I just want to give you hope that ECMO is amazing-- so keep your head up!! Here is a post about what I went through on my personal blog from last year if you want to read it, http://www.ingoodfaithblog.com/2010/05/alive.html

    Hang in there! If you want to ask me any questions about my experience with ECMO, feel free to email me at jillian.crowe@gmail.com


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