April 11, 2011

Momentum

Today was overall a very good day for Clara and we are celebrating God's faithfulness to us!  Her echocardiogram showed today that there is multidirectional shunting across the ductus (fancy talk for we've got the blood in her heart starting to flow in the right direction now!) which indicates that pulmonary pressures are near systemic pressure.  Remember when I said we needed her pulmonary pressure (blood pressure in the lungs) to be less than her systemic pressure (normal blood pressure).  So far it's been "super-systemic" which means pulmonary pressure was way higher than her systemic pressure.  If they're getting closer together, it means that her pulmonary hypertension is improving!  So, it was a good echo report.

The doctors thought last night/this morning that she might have some kidney stones because there was some calcium in her urine and yesterday's urine output was so low.  A renal ultrasound today revealed completely normal kidney function and no kidney stones!  Her chest x-ray looked unchanged.  Our only other incident today was a little equipment malfunction.  It looked like Clara was spiking a fever and so we were turning down the temp on her blood going through the circuit to try to cool her off.  They took cultures to have them checked for infection and started an antibiotic.  Her temp looked like it was around 102, but her body felt cool and then her heart rate started dropping pretty rapidly.  It turns out that the temp probe had gone bad.  Unfortunately, since we'd been cooling her body, her temp had really dropped down to about 90 degrees!  Poor baby!  We warmed her back up again and are thankful that she likely doesn't have an infection.  A few hours later, all her stats were back where they belonged.  (It reminded me of a game that Robert plays in the car sometimes where he turns the A/C up as high as it will go until someone can't stand it any longer - "Cool Out" he calls it  Clara did not like Cool Out.  She was fussy and shivering and so pitiful.  We thought it was from a fever and were so sad to realize what had really happened!)  I'm just thankful it didn't last long and that we got her happy and warm and comfortable again pretty quickly. 

The two drugs that I mentioned last night (milrinone and flolan) were weaned down (this resulted in her systemic blood pressure rising back up to where it was and her pee output starting back up again), but we've left them at low levels while we try to....... TRANSITION OFF OF ECMO!!!  This is huge news, but also a big step and a little scary.  We will (hopefully) begin this process tomorrow by slowly reducing her "sweep gases" which eliminates CO2 from her body, while increasing her vent settings and allowing her to do more of the lung work herself.  This is another "dance" - where we will turn settings down for awhile, then probably have to turn them back up again, give her a rest and then try again a little while later.  If it goes well, it could take 3-4 days to have her weaned off all the way.  It's like giving her lungs a little chance to exercise and practice before letting her really go on her own.  Please be in prayer for this specific process, that our little girl will continue to surprise us all with what a fighter she is and that she'll wow us with her ability to do this work on her own.  Dr. Petty has said we've got a good "window of time" here where she seems to be doing well and we want to give this a shot before any further ECMO complications arise or we have to think about changing out the ECMO circuit a second time...

We are so deeply grateful for the past few days of positive steps in the right direction for Clara.  We feel like we've got some good momentum going now and want for it to continue.  One thing that I'm very excited about is that our nurse today said that once we're off of ECMO and on a regular ventilator, we should be able to hold Clara for the first time.  I can't stop thinking about how sweet that will be.  Especially today when she was shivering and fussy (silently, of course), I wanted so desperately to pick her up and wrap my arms around her and hold her tight.  That desire seems to be getting stronger and stronger every day, so it was a real encouragement to hear that it might be a reality before too much longer.  I'm praying that prayer image over and over again right now.  I can't wait to hold this precious baby in my arms:


Her night nurse from last night made her that crocheted flower for her hair today.  How sweet!!

 

I love her little fingers and I love her little toes.  I love that little button nose, too.  But today, I was especially loving on those sweet little lips.  They pout and blow spit bubbles and she sticks her little tongue out and I think they're just the sweetest thing around.  Someday we'll get those tubes out and that tape gone, but in the meantime, I'll keep loving them just the way they are. 


 And these are the kinds of things that get me really excited these days:  this pee is yellow!!  For the last week or so it's been bloody and red and we have never really figured out exactly why, but today for some reason it's yellow again.  I'll take it!   Plus, her urine output was back up again, so we're back on the diuresis game plan for the time being....


The big things to pray for: continued improvement with pulmonary pressures/heart function, protection from ECMO complications and any further setbacks and successful weaning off of ECMO this week.  Of course, we are continuing to praise God for doing immeasurably more than all we ask or imagine in the life of Clara and in our lives too.  We have so much to be thankful for, but are especially grateful now for this miracle of healing.  May it continue with great momentum. 

35 comments:

  1. Way to go Clara!! All glory and praise to our Heavenly Father who answers prayers. Thank you Abba!!

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  2. She is just BEAUTIFUL in every way possible =)

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  3. A beautiful girl indeed! My prayers and hopes are in full force that your little girl will be safe and snuggling in your arms very soon!!!!

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  4. AWESOME NEWS!!! I just felt in my heart all weekend that God was doing some mighty work inside of Clara! Her fighting spirit is paying off!!! Praise God from whom all blessings flow! Can't wait to hear that you've held that sweet baby in your arms!!!!!!!

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  5. I am in awe of this little girl's strength. Praying for her daily. I hope it's not long before you get to hold her in your arms!

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  6. Thank you, JESUS!!!! Come on, Clara!!! Fight little girl, we love you!!!!!!!! -Your prayer warrior, Rebecca

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  7. Wishing sweet dreams to you all tonight, and hoping my dream of last night becomes a reality very soon! P.S. Clara had straight hair in my dream!?! (Hmm...)

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  8. Thanks be to God! I will hold fast to that prayer image and continue to ask God that it be His will! Your amazing posts and tweets have fed me spiritually more in the past two weeks than I've been fed in a long time. He is working through you and through sweet baby Clara to strengthen the faith of so many. Such a tiny, blessed miracle!

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  9. I have been keeping up with your blog ever since Niki Hammond, wife of John Hammond, shared your link on her facebook page. My goodness how I've come to love Clara and the two of you. I was put in the hospital for 6 1/2 weeks with preeclampsia (which is where I became fast friends with nurse Niki). After baby boy Teagan was born he was put in the NICU for 11 days due to premature lung development. My arms ached tremendously during those first five days before I could hold him. I can only imagine the 20+ day wait you are experiencing. But I do know this, no other feeling in the world will compare to the intimate warmth of Clara in your arms. God bless you all. I thank YOU for sharing your experience with me (even though you have no idea who I am) and for spreading the love, faith and hope of Christ. Please know your story has strengthened my relationship with God, my husband and my children and I love you. Judy K. Smith

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  10. God is in this day! Clara is so fortunate to have so many people caring for her in love, prayer and hairbows. Praying for the day to soon come when you can place your loving arms around your daughter.

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  11. Praising God for blessings. So encouraged to read of her progress. God is so so Good all the time. Such an inspiration to me. Will continue to pray.

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  12. God id so good! We are so excited for the Hardy family and will continue our thoughts and prayers as Clara is weaned off ECMO! Brie and Clint Woodfin

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  13. So, I'm thinking that with all the "dance" practice that Clara is getting, she is going to be one heck of a ballerina!

    I am so excited that she is getting to start this new "dance." I just know that she will learn this one like all the others she has had to learn!

    Also, I couldn't help a little giggle about the faulty temperature probe. Don't know why, but there is just something about it that brought a smile to my face. I think it may be the image of Robert playing "Cool Out."

    I am so happy and excited today. And so grateful that Clara as helped me learn how to pray again.

    Love you all SOOOOO much. Can't wait to give you ALL (little Clara too!) a big hug!

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  14. I'm a friend of Wendy's from Seattle, and I just wanted to let you know that I, too, am praying for you and your precious little Clara. She is so beautiful - I know first hand what it is to physically ache from not being able to hold your new baby and have her home with you. Prayers for strength, continued faith and courage. Peace be with you.

    Heather Stephenson, a fellow Southerner living in Seattle. :)

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  15. Ooops...sorry for the mispelling: Wendi Galinsky.

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  16. Praise GOD for this good news!!
    Love,
    Annette and Randy

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  17. What wonderful news!! I have been faithful in praying for all of you each day, and I have been continually believing in God's ability to perform a mighty miracle in Clara's life. I am in awe that He has answered in such a beautifully HUGE way. My life has been blessed through your faith in this journey and from your friends and family around the globe who post on your blog, it appears that so, so many have been blessed through your sweet Clara. To God be the glory. I just love it when He shows off and I pray that He will pave the way for you to hold her in your arms, bring her home, and love on her for a lifetime!!!

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  18. Travis and Lyda Lunceford are members (favorite members) of my church, Trinty Baptist Church, Cordova, Tennessee. They have shared your story with us and we want you to know that many here are lifting little Clara and you up to the Great Physician daily.

    Richard Hipps, Pastor
    Trinity Baptist Church
    Cordova, Tennessee

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  19. Yay for continued progress!!!! What a strong fighter you have! I know you are so proud of her! Many prayers for a good day today!
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

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  20. Such great news! Continuing to pray!

    Emily Beaver

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  21. Celebrating the improvements with you and hoping and praying for continued good news! May God's peace continue to surround all of you.
    Laura

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  22. Thanks be to God for great news. I will continue to keep the Hardy family in prayers. God bless you Clara!!!

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  23. Seeing your pics takes me back to Matthew's days at Brenner. "Trust in the Lord with all of your heart, and lean not on your own understanding. But in all of your ways, acknowledge Him, and He will make your path straight." This is what would go through my mind with our "Brenner Fun"...may it bring you as much peace as it did for me.
    Much love, Team Brown

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  24. Such great encouraging news Miss Clara! We will be praying for you today as you begin your "dance" and thanking the Lord for all the progress you have made.
    Joanne

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  25. Oh she is so precious!! I am continuing to pray for you and your family as your little girl continues to show us just how powerful and mighty our God is. It is amazing how just one tiny little baby can show us so much about our world and how to be thankful for all we have. Thanks Clara!!

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  26. You WILL be holding that precious bundle of love very soon ... oh, what a joyous day that will be. GOD has given your little girl A LOT of determination and the best parents he could possibly find. I can't wait for the day when you tell us that the THREE of you are out of there and off to be a family! Hold on, Chrissy and Robert, that day is just over the horizon.

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  27. I pray night and day for her pulmonary pressure and am rejoicing with you with every good report. I am forwarding your blog to many friends who are also praying for Clara. Your whole family is such an inspiration to me. LOVED the g-mas singing. Blessed me while it was blessing Clara! Hugs to you all...

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  28. Great News!!! Praying everyday for total healing!

    Jennifer Holmes
    Charlie's Mom

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  29. Chrissy- Just wanted to let you know that I have been praying for you, your husband and Clara like crazy, especially in church on Sunday. I have my fiance and my mom praying too. Everyone is so drawn in by your story and your faith when they read the blog. I will never forget when I first came to Wake, your mom had me over as a welcome with the rest of the dorm. I knew then you had a wonderful family and it's just confirmed a million times by how much support all of you have. Clara is beautiful and I love the bows. We will continue to pray for her to fight.

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  30. I somehow found your blog link through Facebook and wanted to share with you that my son was on ECMO for 21 days for a CCAM which is a cyst on the lung. He's been off ECMO for 2 months now and doing really well. I wanted to give you a positive story and will be praying for you all and for little Clara's recovery. Holding her for the first time will be great. We had to wait for the conventional vent to be able to do that too. It's often 2 steps forward and one back. Hang in there. Much love.

    Marian M

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  31. Praise God that you are hearing and seeing encouraging news. GOD is truly A MIRACLE WORKER. Please continue to post specific pray request and the beautiful pictures of Clara. May you feel the love of our Heavenly Father arms protecting you all and CLARA. Connie

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  32. We love Clara and we love you too. Keep up the good work Clara!

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  33. Clara, I'm so proud of you today! Keep working hard to learn to breathe...
    I love you, Sweet Mama

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  34. Those are some beautiful pictures! Is it just my imagination, or does she LOOK remarkably better in these last few days? Way to go on the breathing practice, Clara -- you're a champ! Praying for you all around the clock and learning so much from you.
    Linda Smith & family

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  35. I cannot wait for you to hold her! My own first born was a premie (we were hit by a drunk driver!) and she was taken to another hospital 2 days after birth for more intense care...I was injured and not able to visit her until my own discharge...I will never forget holding her for the first time! She knew her mommy even after all she went through and it was one of the most beautiful moments in my life...That firstborn turned 29 this past March, and she, mercifully, has no recollection of the valiant attempts made on her behalf to sustain her life! May it be so for your precious girl! For with God, nothing is impossible!

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