April 23, 2011

One Wild Month

Clara is one month old today! She's continuing to improve daily, even if it's only small steps. But that's OK, because small steps are going to be the game plan from here on out (if all goes well!). I was telling Chrissy yesterday that I almost don't know how to feel now that we aren't necessarily focusing on short-term, life and death goals. The upside is that our "roller coaster" is now filled with much milder ups and downs and everything is much more stable. The downside is that, from here on out, everything is going to happen much more gradually and require much more patience on our part. But we are SO HAPPY to be where we are right now, wondering when instead of if we'll be able to take Clara home.

Clara is, of course, still doing the dance of CDH, taking steps both forward and back, but they're mostly smaller steps at this point, and most of the steps she's taking have been in the right direction. Here's some of the recent successes and setbacks:

-She's been doing a pretty decent job with weaning off of some of her support. She has been completely weaned off of her Flolan (a drug for her PPHN) and her heart ultrasound today showed no change. This means that she is tolerating being off of the drug just fine. She's also been tolerating the weaning down of some of her ventilator settings and her inhaled nitric oxide. The nitric has gone down to 10 ppm (and will likely go down to 5 later this morning), and her percentage of oxygen has gone down some, as well as the vent's pressures.
-She is still considered a minimal stimulation baby, meaning that we have to significantly limit how much we touch and move her, as well as how much we expose her to light and sound. And of course this means that we still haven't been able to hold her. However, she is getting better about being stimulated. Each turn, weighing, diaper change, and suctioning is getting less scary.
-She's still getting lots and lots of fluid off! She weighed in today at about 12.3 lbs, which is a full pound less than yesterday. She's still got 3.5 lbs of fluid (about a liter and a half) that she needs to get off, but she's peeing as hard as she can and we're very proud of her!
-Her chest tube began draining some milky white fluid today, and we were told that she is experiencing a condition called chylothorax, in which the lymphatic system is "leaking" a fatty fluid into her chest cavity. They told us this has likely been going on for a while now, but we're just now seeing the fatty fluid in her chest tube because they have increased her feeds so much in the last couple of days, so she's had more fats in her stomach to leak out. We're still very unclear on what exactly may have caused this, but the important thing is that it is manageable, and, while we've had to stop feeds again while we wait for this to get resolved, she is getting everything she needs through her IV nutrition.
-Chrissy's not feeling great tonight. She spiked a fever of 102+ and has been in a lot of pain from what we suspect is mastitis. She is on an antibiotic, so we hope and pray for that to get better soon and for her to get back to 100%. Any dudes out there reading this: be thankful for all of the things that we undeservedly don't have to worry about. That goes for all of pregnancy and, I would suspect, much of life in general.

OK, here's the good stuff:


Clara, awake and alert in her new headband/hairbow.

Clara holding Daddy's finger.

Daddy changes Clara's diaper for the first time. (Nailed it!) (Twice in one day!)

So beautiful, especially now that her swelling has gone down.

And here's some really good stuff:


Prayer requests:
-Successful weaning of medications and vent support!
-Continued improvement of pulmonary hypertension.
-Continued success with getting the rest of her excess fluid off.
-Quick healing of her pressure sore on the back of her neck/head.
-Protection from infection.
-Clara's tolerance with being stimulated (touch, sight, sound) so that Chrissy and I can HOLD HER!!!
-Chylothorax (fatty fluid leaking into the chest) to be resolved quickly and without complication.
-Feeding once off the vent (this one's at least several days away, but it's going to be a doozie when we get there).
-Continued praise and glory to Clara's heavenly father for the miracles that he is performing in and through Clara's life. It has been so powerful for Chrissy and me to be experiencing this crisis during Easter time. We have been to the brink of losing our only child, and the meaning of Easter has hit us in a new and more powerful way than it ever has before. Praise God, from whom all blessings [and salvation, and mercy, and miracles] flow.

Thanks to each and every one of you who are following Clara's story and who are praying, hurting, and rejoicing on our behalf. We've done nothing to deserve it, and so we know that each of you is counted among the blessings shown to us by the God of Grace.

With love and gratitude,

-Robert

17 comments:

  1. Thank you for sharing your journey with us! You are on my mind 24/7. Continuing to pray for you ALL!

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  2. HAPPY BIRTHDAY CLARA!! Wow! One month old! Look how far she has come. Thanks for always posting. I noticed you tweeted Chrissy wasn't feeling well, we hope she is OK. The mental and physical roller coaster you ride daily is something few can imagine.

    The pictures are precious and I LOVE the video. Presley will be so excited to see her sweet eyes open and her sweet litle hand moving all around. Surely I will hear the all too familiar "awwwww" when we see her pictures.

    We pray for your family always and keep you close in thought. This Easter I pray for successful weaning and diuresis; whatever it takes! I imagine Clara will stay true to her "minimal stimulation" label. I envision her growing up to be quite fiesty and independent. Great qualities for your beautiful daughter! She will show 'em!

    Presly prays on her own for Clara. She is at the top of her prayers. God is doing amazing work here. Many of these things, you guys may never even imagine. But then again, that's how the Lord works, right? ~ "In mysterious ways"!

    We love you all. Have a Beautiful Easter with your sweet Clara!

    Nicole Jones

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  3. Thank you for that beautiful and hopeful post - so perfect for Easter Weekend! What miracles we are seeing as God works in your sweet little girl. The video is absoutely precious! Our prayers are continually with you with special prayers for Chrissy to feel better soon!

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  4. She couldn't be more lovely: )

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  5. May the beautiful miracle of this Easter morning be a reminder of ALL the ones that GOD is performing every day for us and for YOU! Today is a new promise for baby Clara. Happy Easter Hardy family!

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  6. I just have to add that you look like a pro at diaper changing! :)

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  7. What a beautiful Easter surprise this morning to see the video of Clara, alert, responding to daddy's voice and waving at us! Brought tears to my eyes (and ruined my makeup) to see how far God has brought her. Just as God promised us and just as you claimed it Robert.....Little girl I say to you, get up! So excited for you guys and will be praying so hard that God gives you the gift of holding Clara really soon. Actually holding and smelling that sweet baby girl is what it is all about! Happy Easter to you all. Can't wait to hear more! Can't get enough of my daily Clara updates!

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  8. I'm in awe! Clara is so beautiful, and as many have mentioned, what a beautiful personification of God's glory on this Easter morning! Happy Birthday, Clara! Lookin' good, girl!

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  9. Lisa Dinning HenningsenApril 24, 2011 at 8:46 AM

    Robert....Reading your posts, you sound like such an incredible person, father and husband. No one expects to have to deal with what you, Chrissy and your families have had to endure. But you all have handled it in such an inspiring way. Your faith in God and your willingness to put it all in his hands is truly uplifting. I continue to pray for Clara, her many doctors and nurses and your families. That she will continue to fight and that someday soon she will get to go home. God has a plan and know that you all are loved by so many. Happy Easter!

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  10. Laura and Frank McNairApril 24, 2011 at 1:56 PM

    Dear Chrissy and Robert and Clara Mae --

    Happy Easter!
    The LORD is risen!
    The LORD is risen, indeed!
    Alleluia, Alleluia.

    Celebrating with you Clara's ongoing renewal of life, and her continued healing.

    We pray for renewal and healing to continue in her, in each of you, in us, and in all who read this.

    Shalom,

    Laura and Frank

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  11. Happy Easter to Little Miss Clara Mae Hardy!!! May our Lord and Savior continue to touch and sustain her (and her parents) DAILY. Love and prayers from Elberton, Mary Ann & Chuck

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  12. She is so beautiful! Love the video. We are still finding so much strength and encouragement each day as we watch Clara grow and wait for Maddie to arrive.

    Chrissy - try a cabbage compress for the mastitis. Its weird, but I swear it helped relieve my pain when I was breastfeeding Dillan.

    http://www.lactationconsultant.info/cabbagecure.html

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  13. Thank you for sharing your journey and faith. I am a nurse in an NICU and you all inspire me.

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  14. She is so precious! It is amazing how great she looks and how alert she is! Happy Happy Easter! He has risen! The welsh Fam

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  15. Happy Easter from England, Clara!! I loved seeing your eyes open and your waving in the video! We're so glad that you are doing well!!!
    Love to all!

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  16. God's grace knows no bounds! The video of Clara is beautiful! Praying Chrissy recovers quickly. Your blog is a blessing to all that follow!

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  17. Chrissy,
    HOT showers and hot washcloths on the infected area. Gently massage the red area and pump more frequently (yes, I know it's painful, but will relieve the pressure). Wearing non restrictive bras and no underwires really helps to prevent this. If it lasts more than 2 days, make sure you go back to the doctor.
    Our family prays for your family daily.
    Love and prayers, Yvonne

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