April 26, 2011

The Brave Little Baby

Clara is The Brave Little Toaster Baby.  We ended today (at about 6:00PM) with her fourth surgical procedure in as many weeks - today they placed her broviac line in her groin.  She was a champ!  It did require a trip down to the O.R. which is always a bit of an adventure when you're dragging an IV pole, a crib and bag ventilating your whole way down and back.   And she was put under some anesthesia to paralyze her, but the whole trip was only a little over an hour and she was already waking up from her sedation and starting to wiggle some when I left the hospital at about 8:30 tonight.  Her ventilator settings were all back where they started except for her rate which they'll slowly wean back down tonight as she continues to wake up some more and she was sating 100 again, just like she had been all day.

Up until that point, it had been a pretty low-key day for Clara.  We couldn't really move ahead on much else until this procedure was taken care of, so she mostly just got to rest and build more strength.  She was awake and alert a lot, but also snuck in a few naps here and there.  We talked and read and sang and she continued to keep her watch over that sneaky trio of monkey, hippo and lion.  Her oxygen saturations stayed high all day long and she's tolerating movement and stimulation beautifully.  So, we may even begin to think about starting to wean her sedations some tomorrow.  The last drip IV she has (besides sedation medications of morphine and versed) is milrinone.  It's a very low dose of 0.25, but we're weaning it to 0.12 tonight and then it will come all the way off tomorrow.  We'll have another echocardiogram in 3-5 days once it's all completely out of her system to make sure she's doing okay without it.  We were going to resume feeds today because her chylothorax looks like it has resolved, but it had to be put off until tomorrow because of the broviac procedure.  So, we will start that up tomorrow morning (on the Enfaport formula I mentioned yesterday) and hope that there are no signs of the chylothorax returning.  If it stays away, I think extubation could be in our near future! 

There's the short story on today.  A hot bath is calling my name after an eleven hour hospital day, so I'll just wrap up with a few photos of the amazing shrinking baby. 

morning nap

snoozing soundly

She's been sucking hard on that ET tube.  I think she's ready to extubate!

sweet red polka dots

toesies peeking out from her blankets

so precious

"Did you say you're taking me to surgery again??"

And the "We Love Brenner Children's Hospital Staff Spotlight of the Day is............" MELISSA!  She's been a great nurse to Clara and took excellent care of her before and after her surgical procedure today.  Thank you, Melissa!

Prayers for today:
- We've got less than a kg left to lose, but still need to finish diuresis so we can be done with the Lasix and be back to "dry weight" only!  Her chest x-ray was a little wet again today, so we need the last of the fluid to scram!
- Successful re-starts of feeds and no more chylothorax
- Weaning of milrinone tomorrow and no worsening PPHN once it's gone
- The beginning of weaning off of sedation... we've got a long way to go until those are all the way off
- And on the horizon.... extubation and oral feeds

We are continually amazed, awed and incredibly thankful for the blessings in our lives.  We are so thankful for this beautiful girl, the staff at Brenner and the care they're giving her, the support and love we've been showered with from friends and strangers across the world, and most of all for God's grace and love and His active presence and involvement in our lives.  May He be glorified! 


  1. LOVE to Baby Clara:) Mary Ann & Chuck

  2. I, too am so very grateful for Little Clara in your lives and all the many friends, family and coworkers lending you prayerful support. Though I do not know you, one thing is for sure...you are all loved and cared for so beautifully! A peaceful, restful evening to all Hardy's!

  3. You don't know me, but I have been following Clara's story and praying for you all every day. I am rejoicing with you in Clara's great strides over the last couple of days. My heart breaks for all you have been through, but I believe that God will reward your steadfast faithfulness. My prayer for you this week is that you will get your very special birthday present, Mommy! Hugs from a friend of a friend of a friend.

  4. I just learned about your amazing strength and faith through a friend today. You are a wonderful witness of faith and love for God. I will pray for strength for you and beautiful baby Clara. May the Lord wrap you in His protective hands and guide the physicians and nurses who care for her around the clock.

  5. What a sweet girl :o) it makes my day to hear she is doing well!!

  6. What beautiful blue eyes on the incredible shrinking baby girl! Rejoicing in the good news. Sleep tight all!

  7. I am just so excited for all the great progress she has made! I love you guys and hope you get some rest tonight. I loved the close up pictures of those pretty eyes. Thanking God and praying for continued watching over her. Can't wait for you to be able to hold her. :)

  8. So great to see those alert, clear and beautiful eyes taking it all in! Sleep tight little Clara and rest up for the mountain you are going to climb over tomorrow. Note that I said over and not up. She is truly amazing! God is so good!!

  9. Love the folds in her precious feet. Yayyyy for losing fluid!! She is so beautiful!

    Praying for you all. And proud of the amazing progress!!

    Nicole Jones

  10. Chrissy, she is just so perfectly beautiful! Her sweet little face and hands and TOES. I love all the pictures. I do believe this little girl has a big desire to GO HOME. Always praying and loving your sweet family.

  11. We are so glad it was a good day and soon hopefully you will be able to hear her make those baby sounds.
    Annette and Randy

  12. Another friend of a friend of a friend here...I've been following/praying for Clara since she was born and I can't believe how far she's come in such a short amount of time! We just went out of town this past weekend and I couldn't wait to get to my computer to see how Clara did over the weekend. So amazed by her progress in just a few short days! She looks amazing! God built a fighter in that sweet little girl...she'll be home before you know it!
    Lots of hugs from South Carolina,
    Kristin & Dave

  13. I've been going through Clara withdrawal while our internet has been out the last four days. You two are a wonderful mommy and daddy! Clara has that look in her eye that says "I am so loved!" We continue to pray for Clara and you. May rest and peace be with you, and may your birthday wish to hold Clara be granted very soon!

  14. Praying for your birthday wish to come true.

    Lorie in Michigan

  15. We LOVE the piggies!
    The Schreiners

  16. So thrilled for you and all the amazing progress Clara is making. Praying for you ALL daily. Your faith and your story is such an inspiration! We look forward to checking in on Clara daily, even my 5 year old likes to check in.

    Sending prayers - natalie (friend of the Berry's)

  17. Have you said "This little piggie went to Market" on those adorable little toes yet? Bet you have kissed each of them many times over. We are ALL taking such delight in your sweet bundle of pure joy and just waiting for the day when you "BUNDLE HER UP" for the trip HOME!!!!! What a day of rejoicing that will be!

  18. She is so very precious!! I get teary-eyed every time I see pics of her. Praying for all of you. Thanks for the updates every day.
    Tamara Brown

  19. The "real" baby Clara is becoming more evident everyday! She is definitely making progress in the right direction and I am praying you get to hold her next, even if you stand next to her bed!! Joanne


Related Posts Plugin for WordPress, Blogger...