April 17, 2011

Fluid.

The first full day off of ECMO has been pretty good, all things considered. We've had a few ups and downs, because that's the nature of CDH, but much bigger ups than downs and much greater successes than struggles.

The biggest and most important success is that Clara has been breathing and oxygenating like a champ! Of course, she is still hooked up to the ventilator, which is doing the work of pushing the air in and out, and she is getting 3x the concentration of oxygen that we breathe, but the work of transferring that oxygen to the blood and removing the CO2 is all being done by Clara's lungs. We're so proud of her, and glad to know that she doesn't need ECMO machine. We look at ECMO like a fire engine: glad it was there when we needed it, but we hope never to see it pull up at our door again.

Another big success of the day is that Clara's kidneys seem to be getting back into shape after their less-than-stellar performance yesterday. Yesterday she had little to no urine output, and we were beginning to worry about renal disease/disfunction. When we went in this morning, the nurse was happy to report that she had been peeing out 10-15 mL/hr, a rate she kept up all day. We'd still like to see this amount come up, but for now we're happy to see functioning kidneys.

Those are two great big successes, but we've still got a very long row to hoe. Dr. Turner expressed it very well this morning: "Yesterday we had a very sick girl on ECMO. Today we have a very sick girl who isn't on ECMO." The biggest immediate hurdle Clara has to overcome is the massive buildup of fluid she's acquired in the last week or so. She's incredibly swollen right now, and it looks uncomfortable and it's definitely unflattering. Here's some pictures to give you some idea of how much extra fluid she's carrying around right now.

Here's Clara the day after she was born:


And here she is today:

It's definitely an unflattering picture (of me too); I'm sure one day she'll kick me in the shins for putting it up for the whole world to see, but I wanted to give everyone an idea of just how much we need to get this fluid off. Here's another way of looking at it. Her birth weight was 8lbs, 4oz (3.7KG). Her weight as of today is 16lbs, 5oz (7.4KG). That means that half of her current weight is unwanted fluid.

All this extra fluid is a problem because the more fluid she has in her tissues, the less her lungs are able to expand and fill with air. It's also very uncomfortable to be so swollen, so we're having to keep her more sedated than we might otherwise. And even though it may be a little selfish, it's also a pretty big barrier to us getting to hold her. And even though she's peeing again, she's still getting lots of fluids through her various medicines, blood products, nutrition, and feeds, and at the levels that she's peeing right now, it's not very close to being able to catch up to all the input.

We've had good luck with giving her Lasix in the past few weeks to get fluid off, but the problem we're running into now is that Lasix pulls fluid out of the blood and gets rid of it through urine, but the fluid she's retaining now isn't in her bloodstream, but in her tissues. So giving her Lasix or another diuretic now may still pull fluid out, but then her blood volume drops, and her blood pressure along with it. The body sees low blood pressure/volume and assumes this means that she's dehydrated, so the kidneys slow down and urine output drops, and then we're right back where we started.

We've got a few options to treat this. One is to just try to draw more fluid out of the tissues and into the vasculature (bloodstream) by giving her 25% albumen, which is a blood product that works as a kind of "fluid magnet." It stays in the bloodstream, and hopefully coaxes the fluid that's in the tissues to cross over. We're giving her 3 doses of 25% albumen daily right now. The other thing that we can do is try to un-confuse the kidneys by getting her blood pressure back up, sending them the signal to get going again. So she's on some drugs to keep her blood pressure up, but there's a limit to how aggressive we want to be with that, since getting her blood pressure too high could result in making her pulmonary hypertension revert to the severity that caused her to need ECMO to begin with. And third, getting her moving around can help move the fluid from tissues to vasculature, so we've lowered her morphine dosage a bit so that she can be a little more awake and mobile, and we're also doing some passive range-of-motion with her arms and legs. But again, we don't want to be too aggressive, because if we drop her sedation too much, she could be in pain, which can trigger her PPHN to regress as well.

So there's a lot of opposing forces that are in action here, and we're having to maintain a very delicate balance with all of the variables involved. We hope that the process will become much less delicate as ECMO gets farther and farther behind us and Clara's body parts all start to remember how to work without the mechanical support that it provided. And above all, we hope to see everything progress because of the direct influence of her Creator. We know that God's hand is over every molecule of water in her body, every treatment she receives, and every doctor who treats her. We may have to remind ourselves of it--OFTEN--but we know it to be true, because we've seen it time and time again in these past few days, weeks, and months.

OK, here are some slightly less unflattering pictures of our little lady from today.

Her Mommy, just adoring that chubby little face:

Another wardrobe change. Today Clara's wearing pink:

I wish I could bottle and sell this. I'd be able to afford all the ponies I've been promising her.

Prayer requests:
-Fluid to make its way out of Clara's tissues and into her bloodstream, then into her bladder, then out!
-Blood pressure to hold steady in the ideal range (high enough to stimulate kidneys, but not so high as to endanger lung pressures)
-Kidney function to continue to improve and urine output to increase
-Pulmonary Hypertension to continue to lessen and pulmonary pressures to continue to decrease until they are 1/2 to 1/3 of her systemic blood pressure.
-Successful weaning off of medications and ventilator support; getting closer to being able to do everything on her own!
-Clara's medical staff, that their hands, thoughts, decisions, and actions would be guided by the One who can truly heal.
-Chrissy and me, and the rest of our families. We're riding high on her recent successes, but all of our nerves and emotions have made several laps through the ringer at this point, and I can say pretty confidently that we're all pretty emotionally, spiritually, and physically weary, and we've yet got a long way to go.
-Praise and Glory to Clara's Creator and ours, for the blessings and miracles we've already seen and the ones yet to come!

Thanks to all of you who are following our story and experiencing all of this alongside us. We are continually humbled, encouraged, and blessed by each of you. We mean it. For realsies.

-Robert

16 comments:

  1. And we are continually humbled, encouraged and blessed by each of you, too. You all and your precious little Clara are having an impact on people you probably aren't even aware of. I pray for you all countless times during the day and when I wake up during the night, I lift you up as well. Blessings to you all and special love to little Clara.

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  2. My daughter, Grace is a few days younger than Clara, she is 22 days old and just came off ECMO on 18. She's having a pretty rough time now due to pulmonary hypertension as well. I hope and pray that a balance is found for clara.

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  3. With Praise and Prayer we will continue for Clara and you all.
    Love, Annette and Randy

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  4. Still praying!

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  5. Thank you so much for sharing your family's story (the good and the bad). Your lives have become a testimony to more people than you can even begin to imagine. I recieved your blog through a friend of a friend times 4 as a prayer request. There are dozens and dozens of prayer warriors that I know that do not know you but are wrapping your family in prayer and love (in several different state and three countries!). I cannot imagine how weary you must be, but know that God is working miracle upon miracle in and through your family. Thank you for allowing Him to work through you and through Clara and I will continue to pray for you all.

    Galatians 6:9
    “Let us not become weary in doing good,
    for at the proper time we will reap a harvest if we do not give up.”

    Isaiah 40:28-31
    Have you not known? Have you not heard?
    The Lord is the everlasting God,
    the Creator of the ends of the earth.
    He does not faint or grow weary;
    his understanding is unsearchable.
    He gives power to the faint,
    and to him who has no might he increases strength.
    Even youths shall faint and be weary,
    and young men shall fall exhausted;
    but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
    they shall run and not be weary;
    they shall walk and not faint.

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  6. With my son, the fluid came off SO QUICK once off ECMO. Then some more lingered for a while and when he was taken of the vents and his sedatives were decreased, it went down more because he was able to move a bit.

    There was a little flare up later down the road, like a month after ECMO, but it resolved itself quickly and we haven't had problems since!

    I'm so glad to hear she's doing so well. Gave me a big Monday-morning smile. :D

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  7. I am so glad to see how far Clara has come. Many prayers that the road gets easier and easier. With regard to the fluid build up, did your surgeon ever talk about the possibility of a chest tube? I know some of the babies I have read about have them to help get rid of the fluid from the chest for a while. Dakota was very swollen after her surgery and almost got one but started to remove the fluid on her own, but it was presented to me as a very normal step. Many prayers for good days.
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

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  8. Lord, thank you for where you have lovingly placed Clara today. Make you watch over her and direct her doctors in making right decisions for her. Please watch over Robert and Chrissy and when they grow weary and discouraged, please put your loving arms around them and remind them that they are loved and prayed for probably every moment of the day. "There I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24 BELIEVE IN MIRACLES!!!!!

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  9. Sounds like Clara is headed in the right direction! As some of the others have said, my son was very swollen too in the days after ECMO. It eventually went down and you are right - what a delicate balance the Drs are trying to maintain!!

    Sending many prayers for Clara's continued recovery and strength for you as well!

    Michele
    Mom to Andrew
    CDH/ECMO Survivor

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  10. We girls are always wanting to slim down ... baby Clara, too :-). She is so beautiful and soon will be absolutely gorgeous!!! Just wait until she tries on all those pretty outfits waiting for her at home. That day is coming real soon. Hold onto that strong spirit ... I know you are weary now, but the outcome will restore your very soul. God WILL give you the strength to witness such a miracle.

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  11. We are friends of the Berry's and Maslins and have been following The Hardy Family's story. We continue to pray for you each day. You inspire us with your faith and love. May God continue to bless you with tiny miracles each day and may you feel the comfort of His presence always.

    Natalie Abel

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  12. Continuous prayers from the Welsh Family! God bless you Clara, Robert and Chrissy. Keep up the strong faith and hard work!

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  13. Your spiritual weariness is not evident, in fact I marvel at your faith! Thank you for putting it out here for the whole world to see! You are a testament .....
    Still praying...

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  14. Still praying like crazy for precious Clara. I love to see the comments from parents of other CDH success stories- how sustaining they must be. Praying also for your strength and resilience to continue and for you to hold her soon. Right now, God is holding her and before long, He will share:). Karla

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  15. Pee Clara Pee!!!!!! never prayed so hard for urine output, but the Bomars are praying. Go Clara Go!!!!!!

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  16. I continue to pray for sweet Clara and your family. I heard this poem today, and it made me think of you Chrissy, and the emotions you must feel for that beautiful girl of yours....I hope you enjoy it....

    A Mother's Song

    My heart is like a fountain true
    that flows and flows with love to you
    as chirps the lark unto the tree
    so chirps my pretty babe to me


    There is not a rose wherever I seek
    as comely as my baby's cheek
    there's not a comb of honey bee
    so full of sweets as babe to me


    There's not a star that shines on high
    is brighter than my baby's eye
    There's not a boat upon the sea
    can dance as baby does to me


    No silk was ever spun so fine
    as is the hair of baby mine
    My baby smells more sweet to me
    than smells in spring the elder tree


    A little fish swims in the well
    So in my heart does baby dwell
    A little flower blows on the tree
    My baby is the flower to me


    Ten thousand parks where deer do run
    Ten thousand roses in the sun
    Ten thousand pearls beneath the sea
    my babe more precious is to me.

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