April 14, 2011

Easter in the PICU

We had a bit of a rough night last night.  Clara's urine output had slowed a lot which was making her very swollen and edematous and at about 2AM the hospital called to tell us that her blood gases weren't where they would have liked them and they turned up the oxygen on her ECMO pump.  They thought it might be from the leaky tube that I mentioned yesterday, or something else, but they seemed concerned about it.  We didn't sleep much after that and were at the hospital early this morning.  Once we got there, it turned out to not be too much of a problem and we did get her ET tube (the ventilator tube) changed this morning.  It's a little nerve-wracking because they have to lift and move her and that's always tricky on ECMO, plus they're taking away her air for a quick bit, but she got through it beautifully.  We got some good open-eye time with her this morning before the procedure.  
Clara with open eyes
Afterwards, she was pretty heavily sedated, plus she's very very swollen today, so not quite as gorgeous as usual.  (Still beautiful though.)  We did "cap off" her ECMO pump today to give her another shot at doing this on her own.  She did pretty well and lasted about 30 minutes after all her oxygen was gone, but her blood gases weren't quite where we need them to be, so we turned the pump back on after that.  Because she's gotten so swollen again, and taken on so much fluid, her chest x-ray today showed very wet lungs.  The bottom line is - we must get rid of all this fluid in order for her to be successful off of ECMO.  We will try capping off again tomorrow, but in the meantime are very hopeful for successful diuresis.  I said to a doctor today, "The ECMO pump is what is making her retain so much fluid - if we could get her off the pump, the fluid would go away too."  And his response was, "You're right.  But to get off the pump, we must get the fluid gone."  So, it's another of those catch-22, dog chasing its tail problems.

I'll be honest - I'm growing a little anxious about weaning off ECMO.  I know that we have to be patient and wait for Clara to be ready and trust in God's timing.  I don't want to rush things.  But the longer we're on this support system, the bigger the chances are for other complications, problems and setbacks.   She's done such a great job of inflating her lungs and showing us she can breathe and even reducing the pulmonary hypertension.  I'm just very eager for her to also get rid of this fluid and be able to sustain herself without the pump.  Please continue to be in prayer - especially for this specific need.  Hopefully this afternoon and evening will be successful in diuresis and when we cap off tomorrow Clara will show us what she's got! 

A very bright spot in today was a surprise visit from the Easter Bunny (aka: Nurse Holli).  She brought Clara her first Easter basket today, filled with lots of special goodies.

Clara's first Easter basket
A pretty purple hairbow
 Little Bunny needed a hairbow too....

We had lots of fun "decorating" her crib, hanging some Easter eggs, and giving her some of her new presents, like her beautiful butterfly wrist rattle.   

 Here she is showing off her new manicure (I filed her nails today, too).  Please forgive her peeling skin... that's what happens when you fill up with fluid and puff up like a marshmallow.  I still find these fingers just incredible.

Clara's Easter Egg

Sweet Easter hand

Since I didn't sleep much last night and things were pretty low-key this afternoon, I came home earlier than usual to try to sneak in a nap.  Robert is back at the hospital now, so if there's another update later tonight we'll post it to Twitter.  In the meantime, please pray for successful, stable and rapid diuresis and a longer (maybe even final?!) cap off tomorrow.  We're so proud of this sweet girl and are ready to watch her jump this next hurdle.  Go, Clara, go!


  1. Dear Chrissy and Robert --

    What a lovely baby! She gets prettier every day!! Before long she's going to need a chaperone or the little boy babies in PICU are going to be coming down the hall to ask her to play.

    We can't wait for the day when she can answer 'yes' and scamper down the hall with the two of you in hot pursuit.

    We love you and pray for you many times every day!


    Laura and Frank and Molly Brown the wonder dog

  2. Prayers for a restful night for you all, for fluids to come off, and increased lung capacity for sweet baby Clara!
    Sweet dreams, Clara, Robert and Chrissy...May God give you all rest so that this next hurdle can be jumped with ease.
    -Mundy Price (friend of Rebecca Hethcox Smith)

  3. Praying and praying for you both and for Baby Clara. Keep the Faith. God isn't just "there" he is holding you all in His strong arms.

    "Come to me, all you who are weary and burdened, and I will give you rest." -Matthew 11:28

    "I truly believe we are handed things in life to make us become better and stronger people. I have learned more about life from little Ava than I have in all my years. I adore all my girls but I will always thank God and Sweet Ava for making me appreciate life to it's fullest!"

    Know that I pray many times a day for your family. I know it is hard but someday you will look back on all of this and ask... "How were we able to handle all of this?" My answer, "You just do! :) God Bless.

    ~Terri Helmick

  4. That is what I say too....Go Clara go....you can do this........Love, love, love the easter bow! I am headed to bed and will be saying my nightly prayers for Clara and for you two. May God continue to hold her in his loving arms, strengthen her lungs and make her pee like a champ! Good night Hardy family, don't let the bed bugs bite!

  5. Great pics! I absolutely LOVE looking at this sweet baby girl! Glad she's doing better this week and we continue to pray that each day she gets closer and closer to coming off of ECMO.
    Jodie Baston

  6. I don't imagine the Easter Bunny has enough baskets to hold all the love and good wishes being sent to your special family. Sleep well tonight just knowing that so-ooooooo very many of us have you covered up in prayer.

  7. I started following your blog about a week ago, and I began reading from the beginning and worked my way to the current ones. You are such a strong person, and Clara has came a long way since the first blogs I was reading. I pray for baby Clara every night. She is such a beautiful little girl, and I can't wait to read how much progress she is going to make. Go Clara go!!!!

  8. Praying for continued fluid decrease and for Clara to keep getting stronger and stronger! Love her Easter decorations! What a great time to celebrate the Lord's blessings and his great gifts to us!

    And I love her hand with the peeling skin! It's such a funny newborn thing! Mine both peeled and I wish the baby books had mentioned they would peel like they'd been sunburned!

    Praying for all of you and everyone involved in Calra's care! Praising God for her strength!

  9. Hope you got a good nap in today. Keep the pictures coming; Clara is adorable with all of her bows, bunnies and butterflies! Such a girly girl already! :) We're covering you all with prayers and love! XOXO

  10. Okay, I'm back to my "fluid be gone" prayer. Thank you for sharing all her precious pics. As we've been praying for baby Clara we forwarded your blog to close friends going through a heavy duty cancer diagnosis. Today they got an amazing report the oncologist thinks there's a good chance it's a benign tumor. In the email they sent us sharing the news and praising the Lord, they shared a song, Blessings, their daughter shared with them. "What if blessings come through rain drops, what if healing comes through tears, what if a thousand sleepless nights is what it takes to know You're near." Hugs to you all...and lots more prayers for Clara Mae.

  11. We at Clinicare are praying for Clara at our sales meetings. And Randy and I are praying for at home.
    Annette and Randy

  12. So glad to hear that Miss Clara is making small strides! :) I love your pictures, especially the ones of her holding her Easter egg!! Still praying for y'all--hold tight, you've got a strong little girl!

  13. Prayers from Pa.
    LCDH survivor

  14. Clara ia a fighter and we pray that she will show much improvement this weekend! God will help her take this ECMO problem step by step and one day she will be off for good! We continue to keep Clara Mae in our prayers. Go Clara Go!
    Love and Blessings, The Welsh Family

  15. I've been reading your blog since an acquaintance of yours from college posted it on FB the day Clara was born. I've prayed and prayed and am so excited about how well things are going today. Even though I don't know you at all, I've truly felt like I'm able to "weep with those who weep and rejoice with those who rejoice". Our third child is a baby girl and I feel I've particularly connected to Clara's story because of that. Praying the Lord will keep on blessing you and others following your story and of course, little miss Clara herself!

  16. Hang in there Baby Clara. ECMO is the scariest thing in the world, but then you begin to depend on it. I totally understand your anxiety about coming off of the machine. But you will see that everything will be much easier once you overcome this obstacle. Still in our thoughts!
    Brad, Kellie, and Carter ('08 L CDH) Myers


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