April 4, 2011

Pulmonary Hypertension

Today was a pretty stable day in terms of Clara's overall stats.  They've stayed about where they were last night once we got things under control again.  The bad news is that her pulmonary hypertension is getting worse instead of better and we're not quite sure why.  The nitric oxide that we started yesterday was unable to work because she is not breathing in enough for the medicine to get into her lungs.  So we started her on a new IV medication today (Flolan) with the hopes that it would begin to show some progress. It is a vascular dilator as well.  Unfortunately, it does not look like it has worked either.  We won't know for sure until the echocardiogram is repeated tomorrow morning, but it's looking likely that we will have to add a second medication to this one with hopes that it might work.  The best treatment for pulmonary hypertension is ECMO and she's already on that and the pulmonary hypertension is still high.  We've involved the cardiologists as official consults now and are hoping that they might have some new ideas that nobody else has thought of.  Feeding has been put off again until after tomorrow's echocardiogram because we want to be sure that she doesn't have right-sided heart failure (another complication of severe pulmonary hypertension) before feeding begins.  We are also hoping to start trying to dierese her again tomorrow with Lasix once again.  This has not gone especially well in the past, but we have to try again because her lungs are filled with fluid which is also contributing to the pulmonary hypertension.  I told the doctor today that I felt like this was a dog chasing its tail and we're not sure what problem to begin addressing first because they're all interrelated.  He said that's exactly what's happening.

I'll be honest - I'm worried about our girl.  This pulmonary hypertension is wicked.  Even though I'm very thankful that today was calmer than yesterday and that she's remaining stable, I know that time is ticking, that this pulmonary hypertension must be addressed and that we're running out of options.  I ask you to join us in praying specifically for her pulmonary pressures to drop and the pulmonary hypertension to resolve.     Nothing else can move forward (including weaning off of ECMO) until this is managed.  We've been so hopeful and encouraged that at least her heart has looked really strong throughout this process - I'm sad today to hear that we could be looking at heart complications as well. We're thankful for all the different medications and treatments that are possible and for the many different doctors who are racking their brains to come up with a solution that might work.  But we know that there is still One Great Healer who has the power to open up her pulmonary tissues and allow her hypertension to drop, and give her heart the rest it needs from working so hard right now.  As hard as it is, we continually hand this over to Him with hope and expectation for healing. 

Hopefully we'll have a little more information tomorrow morning after the echocardiogram, the third pediatric surgeon has a chance to look at her and offer his consultation, the cardiologists have had a chance to round and weigh in and we see where we are with this first medication.  In the meantime, please keep praying for Clara.

Things to pray for: Pulmonary pressures to drop and pulmonary hypertension to resolve, her fluids to drop and allow for room in her lungs for them to begin doing their job, the large team of doctors all trying to share ideas, communicate with one another and make decisions in Clara's best interest, and no further heart complications.  Continue to pray for us as well - that we might not get too caught up in the medicine and be able to focus on savoring each moment with our daughter.  And that we will remain faithful in trusting God, even when it is difficult. 


  1. Praying right now for a miracle!!!! PLEASE, GOD!

  2. Last night, first thing this morning, and at dinner, we prayed specifically for Clara's pulmonary hypertension medication. We will be praying again before bed tonight. LOVE, Mary Ann & Chuck

  3. Chrissy and Robert,
    AM praying for your/our little girl. She is in GOD's most powerful healing hands. You both are resting in HIS loving, supportive, caring arms. HE is your ABBA, your Daddy, crawl into HIS arms and rest. LOVE each of you. Janna

  4. We are praying for precious Clara, We also are praying for Chrissy, Robert, Karen, Bob, Mary Ann and Lee, We know that Our God can do infinitely more than we can ask or imagine. We love you and Clara so much!

    Love, Pam and Marvin

  5. You are in our thoughts and prayers.
    Fight little Clara fight!
    Ramsey's Grandma Mary

  6. Yes, remain faithful in your trusting of God. Praying, praying, praying for all of you.

  7. Oh Chrissy, this is the most difficult part of her recovery where you must feel you all are on a rollercoaster. I am praying her medical team will come up with a way to diuresis her gently and for the flolan to work. So often this stage is 2 steps forward and one step back. Everything is a delicate balance. We will continue to pray for Clara, you and Robert, as well as the staff who care for her. Joanne and Kirk

  8. Jim and I lifting your specific prayers this evening and I am sharing them with my "prayer warrior" girlfriends and the Shepherd Team at my church who've been praying for Clara Mae as well. He is an amazing God!

    Karen K

  9. So many prayers are going out to everyone involved in coarse care. Pulmonary hypertension was logan's biggest batte. Through all your struggles you absolutely amaze me in your strength & devotion. May God continue to wrap his arms around you and Clara. I also can tell by your posts that your classroom kids are very lucky to have you!!!
    Erika Minch
    Cdh mom

  10. Chrissy and Robert: We are praying hard for brave, beautiful Clara and will also pray for the specific items in your prayer request. God bless you all! Love, Buddy and Katherine

  11. praying for her! praying for the doctors to all be led by God in the same direction... praying through tears remembering days just like this with our Noah... I've been telling friends about precious Clara asking for them to pray!

    mom to Noah RCDH

  12. Just said a prayer. Will continue praying for her.

  13. Please know that I'm praying for your family... I'm a friend of the Davis's. May God grant you that peace that passes all understanding.

  14. Dear Lord,
    Bless Clara with your healing touch.
    Bless her family with peace and rest.
    Bless her doctors and nurses with wisdom and guidance.
    Bless us all with steadfast faith in your everlasting love.

    Erica Sigley

  15. Praying for that baby girl.

    Janna Caravia
    Due with CDH Baby Boy 4/26/11

  16. Praying that Clara's pulmonary hypertension begins to calm down and that the medical team can find a solution that works very soon. Battling pulmonary hypertension was one of our son's biggest hurdles, it is such a delicate balance.

    Clara will be in our thoughts and prayers!!

    Mom to Andrew
    CDH/ECMO survivor

  17. i read your recent entry about feeling so helpless to do anything for clara when she was making her silent cries. how fresh that feeling and memory is for me. it was the first truly sad moment i had after our hollis was born. to know he was suffering and there was nothing i could do. i remember saying, someone is going to have to tie my hands behind my back or, at any minute, i'm going to HAVE to pick my baby up. it was 3 weeks later that i finally got to do just that. i think knowing that other moms and dads out there had survived their experience meant just as much to me as the prayers that were lifted up for hollis and for us. PLEASE reach out to us if you need an ear that has heard all the terminology already. we are here for ANYthing you need. i wouldn't say it if i didn't mean it.
    mom to warrior hollis, lcdh and chd survivor

  18. Continued good thoughts y'alls way. Go Clara go!

  19. Praying so hard for each of you!

    Melissa Brady

  20. God is good. We love you.
    Brittany and Kevin

  21. Chrissy and Robert,

    I know this is breaking your heart. As you said, try to savor every moment and see a precious moment when there seems so much is working against you. We continue to pray. I pray all day. When I wake, when I drive, when I rest. I am praying for all the specifics you asked for.
    I have been at the PICU bedsides many times with mommies and daddies just like you. Watching their babies go through all this and feeling so helpless. My heart is heavy for you. But it is just as hopeful. God is good. He has bigger plans here than we can even fathom. Keep yourselves healthy and rested. We are all praying for you and cheering for your little princess.

    Love you all!
    Nicole Jones

  22. We will continue to pray that God gives one of the Dr's the idea on what to do about her hypertension. We are all invested in how Clara progresses through all the bends in the roads. We pray especially for your heavy hearts.

    Annette and Randy

  23. Chrissy, Robert, and our precious Clara,
    feel God's loving, healing presence with you and near all of you. Feel all the prayers of your friends in the church and outside our church.
    Love to all of you,
    Chris Norman

  24. This comment has been removed by the author.

  25. Praying for all of you this morning as you meet with physicians, run more tests, and try to enjoy time with your sweet little one!

    Amy Diamondidis
    (sorry about the previous post-messed it up)

  26. Praying for your precious Clara. We pray for peace and comfort as each new day comes. We pray for her pulmonary hypertension to resolve, and that Clara WILL be able to come off ECMO. Our God is an amazing God, He is with you and Clara every second......

    With Love,

    Kelly and Daniel Parkins
    (Mom and Dad to Baby Samuel Parkins)

  27. Hang in there! Our prayers continue.
    The Schreiners

  28. Praying for you and your sweet girl!!

    Lord, we lift Clara up to you, the Great Physician and ask that you would heal her body. We ask you to let the pulmonary pressures in the heart/lungs to go to the normal levels and that you would reverse any damage that has begun. We ask this of you because we know that all things are possible through you. Continue to strengthen her parents and help them not get caught up in the minute to minute numbers, but focus on you. Take their fear. Take their worry. Surround them with love. Amen.

    Exodus 14:14 "The Lord will fight for you; you only need to be still."

    Psalm 46:10 "Be still, and know that I am God."

    It is the hardest thing we will ever do - but praying for you to be able to be still.

    Liz Dooley
    mama to L-CDH Survivor Finley (8/12/10) and Rowan (8/17/07)

  29. Dear Chrissy and Robert,
    We are FDCC friends of your mother and father, Mary Ann and Lee. We are continuing our prayers for your precious little daughter, Clara. I can feel your pain as I read your words, telling of Clara's struggles. How I wish I could take it away and make her well! We know if we, being human, have those feelings, how much more Jesus feels that for us. Even though we cannot understand His plan, we trust in His love for us, and know that His plan for us is good, and that it will one day be revealed, so that we will understand and rejoice at the blessings He has poured out upon us! We are standing with you in spirit, praying for your precious child of God.
    Sending our love to all of you,
    Carol Anne and Mills Gallivan

  30. Just prayed for the specifics and will pray again before bedtime tonight. As thankful for and as wonderful as medicine is, we know that God is the great physician and healer- - - and Lord, we give Clara back to you and ask you to provide for her every need, healing her body, and give Chrissy and Robert the faith to believe all of our prayers shall be answered. In your most holy name, Amen

  31. "I always see the Lord near me, and I will not be afraid with Him at my right side. Because of this, my heart will be glad, my words will be joyful, and I will live in HOPE." Acts 2:25-26
    Praying there is hope in your today and joy in your tomorrow.

  32. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Is. 40:31


Related Posts Plugin for WordPress, Blogger...