April 28, 2011

Pretty in Pink

Clara was much happier today!  We think she might have her days and nights mixed up because she was awake and alert (and happy) for much of the night last night and slept for a good bit of the day today.  We'll work on switching those around after we get her breathing and eating on her own though.  Just a few changes for her medically - We weaned some more drugs (Hydrocortizone by another 10%, one less dose of Lasix, and a step down on her Morphine). She's back to her birth weight, or close to it, so we're no longer calling her 'wet weight' and 'dry weight' two different things, although she has a bit more diuresis still to do, we think.  The chylothorax appears to have resolved; we'll pray it stays that way!  We increased her feeds to 10ml/hr.  And we've weaned several vent settings today.  She's very very close to levels there for extubation.  She was not grouchy or fussy today and tolerated all of these changes very well, so we are super proud of her!

She's been sucking on her ET tube so much that today we tried giving her a paci, just to see what she would do.  She liked it!  I'm very encouraged by that since she hasn't had to use that sucking reflex yet in her five week life.  I'm hoping that since she still seems to remember how to suck that feeding won't be as much of a battle as it sometimes is with CDH babies.  There's still swallowing and reflux issues, but hopefully she'll conquer those too when the time comes.  This morning they moved her IV that was in her hand to her foot so for the first time in her life both hands were free!  That was fun.  We also played with a new toy that we got her.  As much fun as monkey, lion and hippo are I thought it was important that she learn about some other ecosystems too.  The new toy is pond creatures: frog, fish, dragonfly/butterfly (we had much discussion today about which it really was) and a turtle.  Clara approves.  If she continues her progress as she has been, and no other obstacles pop up, I think that we will have her in our arms very soon.  I'm still hoping for extubation this weekend. 

Here are just a few photos and videos of today.

Sucking on her paci!

I always swore I wouldn't put these big giant headband bows on a bald baby, but here I am.  I can't resist.  She's just too precious. 


Checking out her pond friends...

She studies them carefully!

Snug as a bug in a rug!



I’ve said this before, but it bears repeating.  As I was driving to the hospital this morning, I caught myself feeling a deep sense of joy, contentment and excitement to be heading to the hospital again. I thought to myself how strange it is in many ways.  I believe that God has planned for me to be a mother and I believe that he has given me a strong desire to have this new role.  I’ve longed for this for a very long time.  But I never thought it would look like this and I recognize that by the world’s standards and expectations that I should be angry and disappointed and sad and frustrated.  But I just love being Clara’s mother.  I was so excited to be driving to the hospital this morning, knowing that I was going to have another day to spend with her.  That level of joy and contentment, even amidst difficult circumstances, can only come from God.  Towards the end of his life, Paul writes in Philippians about learning how to be content in all circumstances.  “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus… for I have learned to be content whatever the circumstances…. I have learned the secret of being content in any and every situation…  I can do all this through him who gives me strength.”  (Philippians 4).  I understand what he means, because I am overwhelmed with feelings of joy and contentment right now myself.  But I don’t know that it is something I have learned as Paul says.  I think it’s just been given to me as a part of God’s amazing grace and by the prayers of so many.   

Please continue praying for Clara's healing.  Pray that she will be able to successfully extubate and take over the work of breathing all on her own.  Pray that her lungs will continue to grow and inflate and that they will give her the strength she needs to reduce her pulmonary pressures.  Pray that she will continue to tolerate feedings and that as we move to oral feeds in the coming weeks that she will learn to eat on her own as well.  Pray that the chylothorax will not return and that she can continue to wean her sedation drugs.  Most of all, continue to thank and praise our God who has made Clara so beautifully and has planned wonderful things for her life.  He is the giver of all good things, including joy, contentment and peace. 

17 comments:

  1. I am normally not a fan of the big baby hair bows but the combo of beautiful Clara + cute pink headband is working for me. She looks so cute. I'm so glad to hear how contented you are. I feel that way about being a mother even during deployments. I am keeping the prayers going. I hope you are able to hold that sweet girl soon.
    Amy Cherry

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  2. She looks like Josephine Baker in that hairbow! (You know, if Josephine were white. And six weeks old.) I don't even know her, but I'm proud of her. And you, Chrissy.

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  3. Bert and I have been praying for Clara and both of you for the past weeks. We are praising God for His wonderful work in your lives. Thank you for being so bold in your faith in Him. Your dad posted that you have had 175,000 hits on this blog! What a witness!!! Clara is being used by our Father! I know that through your posts and Clara's birth people are hearing about the Lord! "All things work together for good to those who love the Lord!" Praying for you... Bert and Luann Kirk

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  4. The Kirks are right - Clara is being used by God in an amazing way as are you two! What an honor and blessing it is to be a part of the prayer team for this absolutely precious little girl! I LOVE her bows, her pacifier, her mobiles and hearing you and Robert talk to her. She has gotten very alert and I'm especially praying that you both get to hold her very soon!

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  5. Hi there! I am a good friend of Garrett's mommy, Janna (ourcdhstory.blogapot.com) & have been reading your posts for a couple of weeks. and I just have to say...you are a wonderful mother! I love reading the scriptures you post & how God is your sustainer through all of life's ups & downs...He is truly & holy GOOD! Joy! Isn't it a beautiful thing?...

    I praised God for Clara this morning...& asked Jesus to heal her body quickly...and to continue giving you this remarkable strength & wisdom.

    Thank you for sharing your heart so beautifully!

    Emily (drewandem.blospot.com)

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  6. Still praying and praising God. You are all amazing! And someone had better warn Jeannette Bowman that her reign as Queen of the Hats is in jeopardy . . . Clara is stylin' in that big bow! Hope it's another fabulous day of exciting baby steps!
    Linda Smith

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  7. How thankful I am each time I read about Clara's progress and see the beautiful pics of her. So sweet. I pray you are holding her close very soon. Prayers continue.
    Love to you all,
    Mary nell

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  8. How thankful I am each time I read about Clara's progress and see the beautiful pics of her. So sweet. I pray you are holding her close very soon. Prayers continue.
    Love to you all,
    Mary nell

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  9. Tears of joy are flowing down my cheeks as I'm watching Clara and listening to Daddy say, "I love you, Clara". I know that God is good and always answers prayers. It's just a human reaction to be so very glad when you can see the answers to the prayers. Thank you, Hardy's, for being such an inspiration, for showing us what faith in God can do.

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  10. Can't help it....seeing that sweet baby sucking on a paci and holding her daddy's fingers was just sheer joy and brought tears to my eyes! Continuing to pray that in God's timing she will be breathing on her own, you are able to hold her in your arms and she will come home soon! Lord while we know all things happen as you see fit, would you please put that baby in her mommy and daddy's arms really soon! You Lord, have all the praise and glory for the good work you are doing in Clara Mae.

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  11. Yeah Clara!!! I had a dream the other night of trying to feed a beautiful baby girl in the nursery who had been very ill. She did so well, her mom breast fed her. This must be my vision for you Chrissy. We are very thankful to her of her progress.
    Blessings,
    Joanne

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  12. So glad to see her new head covering. Pretty nice I must say.
    Love,
    Annette and Randy

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  13. The 3 of you just keep amazing us .... such love and such a willingness to share it with us. The future just looks brighter and brighter each day. Thanks for uplifting us as we try to uplift you. God is blessing us all through this special Hardy family!

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  14. She is more beautiful every day. God bless you all!!

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  15. A paci...WOW!!! Yeah!!! I am so excited to read about Clara's day...stilling thinking of and praying for this beautiful, sweet, precious baby, Clara...Love from Elberton, Mary Ann & Chuck

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  16. Gotta LOVE those pacies! I am such a firm believer in them that I always swore I would tape them to their sweet little mouths 'til they took to them! With a paci you can get in and out of the grocery store, grab a bite to eat, keep her happy in her car seat...you get the drift! She is so absolutely beautiful. Keep your heads up, your faith up and your positive attitudes up...My love to you all.

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  17. Praising God for a good day for you all and sweet Clara. We are friends of the Maslins and Berrys here in Asheville and have been following your story. Our twins spent some time in the NICU 5 years ago and we know the roller coaster ride that a NICU stay is....praying that your ups will greatly outweigh the dips in the journey! Just wanted you to know you have many folks praying for your precious girl! She is beautiful and we love seeing all the hairbows!!
    Michael, Catherine, Caroline, Abby & Molly Ryan Goforth

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