June 11, 2011

78 Days Later

Clara is sleeping.  Robert is starting her 9:00 tube feed.  I'm sitting down to try to catch you all up on our discharge day. 

First of all, many many thanks, once again, to each and every one of you for praying us through to this point, for offering encouragement and advice and love, and for celebrating so joyfully beside us at God's mercy, grace and blessings.  We stand in awe of His power and glory and praise him for what an amazing thing He has done in our lives.  We never would have imagined that we'd have so many people, many of you strangers, to walk this journey with us and we will be forever grateful for you.

On Wednesday, there started to be some talk of discharging on Thursday instead of Friday.  Dr. Block felt like our plan of daytime breastfeeding and nighttime gavaching (that's the feeding tube) was going fine and that we really could go ahead and get out of there.  Couple that with a really really nasty case of mastitis for me and he was eager that we all just get home to our own space.  So Wednesday was a flurry of final appointments and meetings with lots of folks to get checked off on things.  Wednesday night Robert and I learned how to put in Clara's NG tube through her nose which was fairly traumatic for me, but now it's done and I never intend to do it ever again (I've made enough nurse friends the past 11 weeks... Holli, Crystal, I will be calling you if that tube comes out).  Then, we roomed in one last time to make sure we were able to handle the feeding pump and all those logistics.  I was as sick as a dog, so fortunately Robert took care of Clara all on his own that night and just roused me every few hours to remind me to pump, take advil, and go back to sleep.  Thursday morning we got the official word that we could go.  A quick note - if you ever spend 78 days in the hospital, you may acquire more stuff than you realize.  It seems that a significant portion of Clara's nursery had slowly been moved to Brenner's.  My poor mother made about 5 trips to the car (and dealing with the elevators that many times at Baptist Hospital is a real gift.)  Finally, about 2:00, we got Clara dressed in her special going home outfit (Thanks, Mere) and we began saying our goodbyes.  We said goodbye to Karen, our daytime nurse in Intermediate.

Karen, one of Clara's intermediate nurses
 We said goodbye to the rest of our NICU friends who we have loved and been loved by so well.  Of course, not everyone was there that day or at that time and it felt weird to not be giving each person who touched us so dearly a proper goodbye.  We did get to have final hugs from Dr. Block, whom we will never forget.  He "bookended" us, as he called it - both admitting and discharging Clara.  And he was with us through some really difficult days at the beginning which made this day of leaving so extra special for him and for us. 

And then we went back to the PICU where we spent the 22 days that Clara was on ECMO.   Those were the hardest days of our lives and in crisis you can really bond and connect with people in a very unique way.  We love that PICU staff so dearly and felt their love so richly as they doted on Clara and expressed their excitement for us to be carrying her out the door. 

Just a handful of the PICU nurses who we love so much.  Wish we could have seen the whole PICU and NICU staffs...
 We spent 78 days at Brenner Children's Hospital and on Thursday we walked out of those doors changed people.  We will never be the same for the experiences we had in those 78 days.  God has taught us much, poured out love and mercy on us that we have not deserved and blessed us richly in countless ways.  Although I wouldn't wish what we've been through on anyone, in a strange way I kind of treasure this time.  I've been in the middle of a miracle.  How remarkable is that?  I have felt incredible sadness and fear and despair, but also experienced such incredible peace and joy and hope that I think may only be possible with the former.  In short, I am thankful.

Clara was wide-eyed and alert as we left the hospital.  She was truly taking in the sights all around her and seemed amazed and interested that there is a world outside of the NICU.  When we walked through those doors and she experienced "outside" for the first time, her eyes were so big and happy.  She likes being free.  Just as Robert pulled up with the car, she dozed off for the first time in hours.

Dozing off as Daddy drives up
When we placed her in her carseat for the first time, those eyes shot wide open again and she cried and fussed, but only for a moment before settling down for her first car ride.  She gazed out the window of the car for awhile and eventually slowly nodded off again.

Once we got home, we took Clara in the proper way through her front door and beneath the gorgeous banner made for her by her Aunt Wendi.  We paused very briefly (it was 98 degrees) for a few quick photos like the one you've already seen.

Then, it was time for Clara to meet Rufus.  In all the excitement, we broke all the rules about how you're "supposed" to introduce the new baby to the family pet.  Good thing Rufus is the world's most perfect puppy.  He was excited to meet his new baby that we've told him all about, but behaved like the perfect gentleman and didn't jump on her or anything.  Since he's had two and half months to smell her on us, I think he knew right away what was going on.  He's always been great with kids, but we all felt sure that he somehow knew from the start that she was ours.  Mostly, he's glad to have his people back at his house and around a little bit more.  He's hardly left our side (or Clara's) since we've gotten home.  And yes, Clara has already been indoctrinated with her first few face kisses.  She was just fine with them.

Rufus and Clara meet, at last
In our first hours at home, Clara just looked around like she was trying to figure things out.  All the lights and colors and smells were new, but she never fussed, she just refused to sleep.  Too much to take in, I guess!  This is the expression we mostly saw.

She has slept well at night and eaten well during the day since we've been home.  Mama, Daddy and Clara are all doing well.  We'll write more about our first few days at home in another post.  But, as many of you have anticipated, this is in many ways the end of the story.  We still have some medical obstacles to overcome like getting Clara's feeds all oral and that NG tube gone.  While we are eternally grateful to be home and have Clara with us here, our lives are not instantly "normal."  We've been told by doctors to protect her from people and keep her fairly isolated, calm and restful for the first several weeks or months.  We have a big stack of appointment cards for follow ups with various doctors and that will probably dominate our schedules for quite some time.  And of course, there's just the normal "adjusting to life at home with a baby" stuff.  I'm learning Clara's routines and cues and we're all trying to figure each other out.  All this to say, I will continue to write and post photos, but probably not with anywhere near the frequency that I have the past three months.  We appreciate your continued prayers for us for we know that we still have some struggles ahead of us.  We do feel some sense of closure at this juncture, just knowing that the worst is behind us.  And hopefully over time this blog will evolve back to its original purpose - just a random post here and there about a family trip to the zoo or a special birthday celebration.   Hopefully it will begin to contain a lot less medical jargon. 

Since many of you have asked, yes - I do intend to print this blog in book form.  (There are several cool websites that do this for you).  It's the best way I know to be able to tell Clara her story someday when she is old enough to understand.  This post will be the last in her book.  It is my prayer that when she reads her story, she will know deep in her soul how special the beginning of her life was, that she will recognize the power of prayer, that she will be inspired by the fervor of a community of believers, that she will be humbled by knowing she is one of God's special miracles and that she will always know how very much she is loved by many, but most of all by Her Creator.

Thanks Be To God. 


  1. Oh how we have prayed. And God knows we will continue. Your family is beautiful! So happy for and proud of you all.

    Divine Intervention is a Beautiful Thing!

    We love you all.
    Nicole, Peyton, Patterson and Presley Jones

  2. Congratulations!!! we've been praying for this day and I'm so happy it's here! I know that you have lots of transitions to go through, and you will get through them. Cherish these days. Cherish every moment! She is a blessing from the Lord!!!!

    KYG '81

  3. My eyes are full of tears. Have I just been going at such a pace that I haven't fully grasped this miracle of miracles? Somehow tonight this "last" chapter has hit me. What an amazing story you have told, my dear daughter. I am so proud of you, and I am indeed grateful that I have been able to be by your side. I love you and that sweet Clara very, very much...

  4. Chrissy, Robert and Clara what a wonderful life you are experiencing. I pray God will continue to bless you each day. Your story has touched my life in a way that I will never forget.
    Thank you for sharing,
    Sandra Curtis

  5. Chrissy, Thank you for inviting all of us to be your prayer partners in Clara Mae's journey! It will be so exciting to see God's plan for her life revealed!

    May the peace that passes all understanding keep your hearts and minds in Christ Jesus, and the blessing of God, The Father, Son and Holy Spirit remain with you always! - Amen!

    Karen K

  6. Loved the ending to this story......So glad that your little miracle is just where she should be, at home. :)


  7. Happy endings are the best! May this "ending" be the beginning of those "normal" days you once daydreamed about! Congratulations and Mazel Tov...and thank you Clara for bringing all of us a little closer to knowing God's love.

  8. It has been a blessing to me to be a part of Clara's (and your family's) journey. She has taught me so much...I will continue to keep Clara in my thoughts and prayers ~ May our Lord and Savior continue to bless Clara throughout her life ~ Love from Elberton, Mary Ann & Chuck Martin

  9. I have been trying to post to you for days and have been unsuccessful! I am so happy for you guys, Clara is beautiful and looks so healthy! I cannot imagine how wonderful it is to have her home (though, I pray I will in the coming months!) This post tonight, I can relate to so well, about treasuring this time, at times I find myself looking at Grace and thinking how lucky we are to be living this life and then think how crazy that is!
    Congratulations and enjoy your sweet girl!
    Miranda Hall (Grace's mom)

  10. This is a beautiful story and a wonderful testimony of God's amazing love. I am so thankful to our Father in heaven and so happy for you and that wonderful mom of yours!
    Mary C. Miller, Tucson

  11. I have so enjoyed your blog over the past 6 months. I've become so anxious every evening to hear more news. This is the greatest news by far, but I will miss hearing the day to day news. God bless you all on your new journey. What a wonderful sight to see you all on your front steps!
    Sheryl and Larry Burnett/Clemmons

  12. Tears ran down my face the entire time I read this. I tried to read it outloud to my 5 year old who have been in faithful prayer for Clara and who looked forward to seeing her picture every day, but I couldn't because of the tears. Glory be to God. This is truly a testimony of God's amazing love. We look forward to your periodic posts, because we would love to continue to follow her story. We will continue to pray for all of you.
    Mark, Marsha, Maggie, and Max McKnight
    Mocksville, NC

  13. Oh, I just love a happy ending! "Clara is home!" is the buzz all over town. Now THAT'S some news I'm happy to spread! I know she needs to be shielded from all the germs the city has to offer but are you two ready for dinner to be brought in? Jayne

  14. Thanks be to God!

    Cecily Hughes
    Greenwood, SC

  15. Tears fill your eyes when you read this! Clara is a special child of God, she is miracle, but mostly she has lead people to greater faith in the Lord. Every time I was feeling down I came here and read about this baby that was going through something I could not even imagine, it changed my sadness and I turned to God for help! Thank you God and thank you Hardy family!

    Love, Maggie Welsh and family

  16. Thank you for letting us join you in this journey. We have prayed as a family and it has been a great way for me to show my children what God can do. My boys know the power of prayer. Being a mom is the best gift that was ever given to me. Cherish every moment! With love the Williams family - Paul, Diane, Spencer, Palmer, and Cooper.

  17. I found your blog on a friend's Facebook page just after my daughter was born. We woke up to your updates every morning and prayed throughout every day. I am so grateful for His miracles. Enjoy your baby girl and may your life together be as blessed as it has been up until this point. The picture of your family in front of your house made me cry tears of joy. My daughter and I will miss our daily updates but are so thankful for the reason for their disappearance. Enjoy that wonderful miracle!

  18. I have been continually praising God for Clara's journey over the past months. Not only for Clara, but her parents and the multitudes of people her life has touched, and lives that have been intertwined. Clara has an amazing story where I see God's hand woven in each day. Seeing a critically ill infant go home to be with their family was the highlight when I worked with babies! I felt privileged to care for a baby until they could go home where they belonged with their family.

    We are just so thankful that Clara is home and all of you can be together!
    Love and blessings,
    Joanne and Kirk

  19. Oh, man. I'm not one who usually cries at the blog, but these pictures really got to me -- especially the one of you and Clara standing on the ramp under the Brenner's sign. I will never forget wheeling you up that ramp the day after Clara was born. You were even wearing the same blue dress. Everything was so new and uncertain. I was terrified for you and for Clara, and I desperately wanted to say something to make it better, but I couldn't think of anything to say. I'm so, so grateful that you finally got to walk out with Clara in your arms.

  20. Absolutely beautiful.....

    I would give anything for a copy of that book!
    I love you guys more than words can express...

  21. My favorites are the final paragraph and the picture of you and Clara at Brenner's Children's Hospital. May you, and all of us who watch, never lose our gratitude and joy at what we have seen God do here!

    Elizabeth Brill

  22. Robert I saw your mom at church this morning and she asked if I had read the blog and I told her that the last time I checked there was not an update! She said she had been crying all morning, not from sadness but from joy! When I got home I read this update andI felt the same emotions. Sadness and joy! Sadness to saying goodby to the journey that you and Chrissy allowed me to walk with you from afar. Sadness because I am really, really going to miss stalking the blog for any and every update! BUT....Joy overshadows the sadness because I am ECSTATIC and EXCITED that the end of Chapter one has come and you have turned the page to begin Chapter two!!! Welcome to all-out, ever changing, never know where it's going to take you parenthood! Clara Mae captured a piece of my heart (and many others)so with tears in my eyes I say "so long, may God continue to bless and keep you until we meet again"! Giving God all the honor and glory for your fighter, your miracle, your TALITHA KOUM!!!!!!!!

  23. I have ALWAYS believed in miracles and happy endings. Thank you Hardys for showing that to be so true. May every possible blessing follow the three of you forever more. Your journey has touched me beyond words... continue to travel with GOD as your guide!

    much love,

  24. You have such a gift for writing, I hope you will continue to blog about "normal" baby stuff too! You will love having those "mundane life" posts too when she is toddling off to preschool...I have kept a blog going of my 3 kids for the last 5 years and I LOVE going back and reading all the details! www.sharedbook.com is a great site for printing- the pictures are a little small in the book, but it uploads everything in order (text lines up with pictures)...Anyway, all the best to you and your family. What a blessing!

  25. I have to say that I agree with Terrie" I can say "ditto" to just about everything she says! Now you just have to promise to post pictures and updates occasionally so we can follow up with the precious little girl who has stolen our hearts! Thank you SO much for your vulnerability and for allowing us to be a part of your lives! We are going to continue praying for every step along the way for you all! I think we have all learned that "there's nothing our God cannot do - for you!!" You have encouraged us in our own faith and walks with the Lord and we thank you!

  26. I am sitting here crying they are tears of joy of course! god is great in so many ways! what a beautiful family you make and i can only continue to pray that things will finally reach that instantly perfect moment! she is gorgeous and i am so happy for you guys! Congrats...

  27. Thank you Chrissy, Robert, Clara and your parents for allowing us to pray with you and for you. You are all inspirations to me. Just think how many people your story has drawn closer to God. I will miss my daily Clara fix, but am so delighted that she is home. I can't wait to tell all my mall walking buddies tomorrow. I want you to know you and Clara will forever be a part of me. And Clara's pink outfit is beautiful.

  28. She's absolutely BEAUTIFUL!!
    I BELIEVE in MIRACLES.. So glad you have one too.

    God Bless you and your BEAUTIFUL family..:)

  29. I am so happy for you and your family, to finallly see what we've all been waiting for. The picture of Clara in her red checked dress looking at something with a half smile on her face, says it all " I finally made it home ". Thank you for letting me be a part of her miracle. Maybe someday we'll meet, but if not, just know how special I think your family is, especially that little fighter, Miss Clara Hardy !

  30. God has been so good. Clara is loved by so many. May the Lord bless you and keep you in your journey ahead of parenthood. We can't wait to meet "Miss Clara". She is so beautiful!

  31. I am thrilled for you and your family. I rejoice in seeing the answered prayers for Clara through your journey. Thank you for letting me be a part of seeing God work in Clara's life. She is a beautiful baby!!! I PRAY that God will continue to BLESS YOU each day.

  32. I've been following your journey through a facebook friend whose daughter was also born with CDH. I delivered a baby girl just 5 days after your little Clara was born. As I started to get us on a schedule, daily prayer time was one of the things I began with my baby. We've been praying for little Clara to come home so she can enjoy all the things my little Reagan enjoys. We are so happy for you and will continue to pray for that sweet little girl!

  33. Just so happy and thankful. From friends of friends up in NYS. God bless you all.

  34. What a perfect last post! Praise be to God, indeed.

  35. overjoyed that Clara is home and safe. a little sad we won't get to "spend time" with her through your posts. Praise God - truly a miracle!

  36. You all look so so happy and we are happy for you. Praise to the LORD from whom all good things come.
    Annette and Randy

  37. I've been checking in every couple of weeks and am so excited to see that Clara is coming home. Thank you for sharing your journey thus far, it is inspiring to say the least.

    WFU Grad '00

  38. Praise God! She is such a miracle and we rejoice with you. May her life be full of joy, love and good health. She is truly a blessing.



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