Wait for the LORD; be strong and take heart and wait for the Lord. Psalm 27:14
When I got to the hospital, I found out that she'd been capped off for about an hour already! Since that was more than the doctors were expecting, I was delighted. Her blood gases were looking good and she was doing a great job on some higher ventilator settings. Everyone seemed so pleased! I could have done a dance. I expected her next blood gas test to show that she was getting fatigued and would need to go back on the pump and rest again until tomorrow. I would still have considered the day a success. But over the next several hours, her gases just kept improving and we were able to pull back on her ventilator settings. Soon it was two and half hours...four hours...and at five hours it seemed like we weren't slowing down or turning back. As of right now, Clara has been capped off for twelve hours. Her little lungs are doing all the work of oxygenating the blood going through her body. She's doing it! Every time a doctor/resident/therapist/nurse/med student came into the room and picked up her chart, their eyes bugged out and we heard exclamations like, "WOW! Really? This is incredible!" We were practically skipping with joy. This little baby is not to be bound by our expectations. She is full of vigor and determination and today she surprised us all.
We are prayerful that Clara will continue what she's started overnight. Once she's been capped off for 24 hours, we can "decanulate," which means take out those big ECMO catheters and have ECMO behind us. At the end of the day today, the doctors were all discussing and planning for her decanulation tomorrow. The ventilator settings that she's on right now aren't too high, but we would also really love it if they could be lowered a bit more overnight, too. She's getting 50% oxygen right now (we started at 100% this morning) and that is as low as we'll go on that. But the doctors would love to see her be able to oxygenate with lower pressures too, so perhaps we'll get those down some in the next twelve hours. It's always possible that she could putter out and that we'd have to turn the ECMO pump back on. So, please continue to pray that she just keeps truckin' overnight.
I sure am proud of this baby. She has worked so hard today; I really believe that God has given her a fighting spirit, a will to live and the determination to continually exceed our earthly expectations for her. We are surely singing His praises tonight for Clara's big day because we know that it is His work in her. We are thankful for your many prayers, too. Do you see them being answered? Isn't it incredible?
I prayed this morning asking for patience. God answered that prayer in a way that He doesn't usually - he seems to have taken away this wait for now! I know that there will be many other opportunities with Clara in the days and weeks and months ahead where patience will be required, where my timeline is not the same as God's, and where I will have to trust His plan for her instead of my own. I got the message, God. It's in your hands. I'll wait if I have to. But thank you for today.
I didn't take a ton of photos today... she's still super puffy and I didn't change her hairbow (that purple one from yesterday seemed to be working so well, I didn't want to jinx anything!). But I need to give some kudos to another member of the awesome staff at Brenner Children's Hospital who has been really, really good to us. This is Dave, one of the respiratory therapists who helps watch her ECMO machine:
|Dave, working hard (or at least pretending to!)|
Here's Sweet Mama getting a listen in at those good strong lung sounds:
So, thank you Dave for your hard work today. Thank you Clara for showing us all how strong you are and how badly you want this. And most of all, thank you God for your perfect timing, grace and mercy. You're always worth the wait.
Things to pray for:
- Continued success capped off tonight (and reduced pressures if possible).
- Continued diuresis. We are still fighting that battle. Even though Clara had great urine output today, she's getting so many fluids, we just can't seem to get ahead of it. Getting off ECMO will help.
- Successful decanulation tomorrow. It's not as scary as canulation, but is still a big day and a huge hurdle. Pray for Dr. Turner who will be doing the procedure.
- We need to get some more "lines in" (IV access) to Clara. She's been getting all her meds through the ECMO pump, so once she's off of it, we have to get them in another way. She's been so swollen and puffy that nobody has been able to get an IV in her. They're trying again tonight. We really need some access so we can transition smoothly off of ECMO!
- Above all, please offer praise and thanksgiving to our God, with whom all things are possible.
Tears of JOY!ReplyDelete
WOW!!! What an amazing girl!! This has made my day!!! Go Clara!!!ReplyDelete
May Clara continue to gain strength...may the Lord continue to reach down and touch her...praying for smooth sailing for the coming transition...hugs and kisses, Mary Ann & Chuck MartinReplyDelete
Way to go, Clara!!! We are dancing a dance here in Nashville!!ReplyDelete
Getting off ECMO is also scary too - though these angels in the NICU somehow have this sense of God's time for that too! I love Clara's Easter Egg! She is going to be such the Diva!ReplyDelete
Still sending thoughts and prayers!
So so exciting! Praying hard in the Davis home tonight for more success in the "journey off ECMO".ReplyDelete
love you all,
Clara and her sweet parents deserve a standing ovation!!!!! What a day!!!!! Even with expected little set backs, the days are only going to get better for all of you. YOUR faith KNOWS it and now I think ALL of ours do, too. GOD IS ON YOUR SIDE!!!!!!!!!!!!!!!!GO, CLARA, GO!!!!!!ReplyDelete
Tears of Joy! Still praying!!ReplyDelete
What an exciting, exciting day for you all! =) I was laid up today (appendix removed on Wed.), and LOVED all the tweets you guys were sending out...praising God for every hour that she was capped off. Praying for her to stay strong through the night hours, and yet to rest peacefully at the same time. xoxoReplyDelete
What WONDERFUL news!!! Go Clara Go!!! This is what I have been really praying for that her lungs would support her. I also thank God for Clara's med team, the ones that stay by her bed, care for her and "wait" with you. Clara made their day today too!!!!ReplyDelete
Go Go Go, Clara! Awesome! Awesome God! Praying like crazy, KarlaReplyDelete
This is just the best news yet! What a joy to come in here to check on her tonight and see this great update. Will pray hard for things to go well tomorrow.ReplyDelete
I can't get Psalm 150 out of my head! What an amazing day! :) Love that you have staff members lobbying to be on the blog! That makes me laugh! :) Sweet dreams tonight.ReplyDelete
God continue to work your miracle as we rest tonight. May we have joy in the morning and hear that Clara is closing in on her 24 hour mark. You are an awesome God and we thank you for being witnesses to your miracle named Clara Mae.ReplyDelete
PRAISE GOD!!!! Your story has been such an inspiration to me!! Your faith has been an inspiration!! I'm praying and thinking for you every day!! I could have cried when I read this today!!!! Keep on keeping on little Clara!! Lots of people love you!!ReplyDelete
you just make sure you have someone take a video when they hand that baby over to you! It will be amazing and i don't want to miss it!!!ReplyDelete
Praying for sweet baby Clara!! God is gonna see her through!ReplyDelete
found myself holding my breath while reading..."get ECMo behind us" YES!! Please Lord...ReplyDelete
Praying that she continues to do well!
Brian and I read your update with smiles and great joy tonight. I teased him that Dave's lobbying sounded like something he would say and do!ReplyDelete
"Easter Came to the PICU" all over again today in a different kind of way, and we are continuing to pray for Clara's wonderful healing. Thank you for sharing your journey with all of us. We love you!
I have just stumbled across your blog,my daughter Fallon was also born with a left sided CDH, she is now 8 years old and perfectly healthy! Hang in there, its a long road ahead of you but so worth it! best wishes from Leah and Fallon in australia!!!!!ReplyDelete
Just want you to know that my 11-year-old son got up at 6:30 this morning and headed straight for the computer. He was so eager to check on Baby Clara! :)ReplyDelete
My friend posted your blog to her blog last week and since I have been lifting your family up in prayer. Every night, I pray for Clara and tell my infant girl about Clara's fighting spirit and how God is working miracles. I am overcome by tears of joy today for your sweet family. We have an amazing God!ReplyDelete
Go, Clara, go! We were thrilled to check the Twitter feed this morning and see that Miss Hardy is still going strong! We will be praying for more good things to come today! I can't tell you how many times a day at SGES I hear,"Have you read the blog today?" or "I couldn't get on this morning, does anyone know how she is doing?" There are sooo many people rooting for this kiddo (and mom and dad's continued strength). Love, The CainsReplyDelete
Counting it down with you! Praise God! GO, GO, CLARA!ReplyDelete
Phyllis and Jim Vaughn
Press on, Little Clara!ReplyDelete
I am praying for Clara and your family, doctors, staff, etc. daily. It's amazing what God can do! I just saw this update this morning and cannot wait to hear how the night went for all of you. Go Clara!ReplyDelete
So happy for all of you! Continued prayers for sweet little Clara, and her success in removing ECMO. Go Clara Go!!!ReplyDelete
SO thrilled with her progress. God is amazing.ReplyDelete
"Keep fighting little Clara!"
"I have set the Lord continually before me; because He is at my right hand, I shall not be moved." -Psalm 16:8
We will continue to pray!
Terri and Ava
Our God is amazing! He does watch over us. Psalm 121ReplyDelete
Clara's will to fight and her determination have just been amazing. I have this feeling about her that in years to come there will be a whirlwind living with you! Your journey so far has just been incredible, and just a privilege to be with you through your blog. Chrissy and Robert, you are just the best!!ReplyDelete
Dear Hardy Family:ReplyDelete
I found your blog thru a friend (Brad Myers) who has a little boy who has endured CDH and came thru like a champ. I have been following Clara's progress since she was a week old. She has without a doubt given me something more to pray about! I just wanted to share something that happened last night. My 6yr old son (Joshua Isaac) sat beside me while I was "checking in" on the baby and he was asking who the little baby was "with all those tubes"? I told him Clara's story and with the sweetest voice, he said, "Mommy, we should pray right now for Clara"! So he grabbed my hand and stretched out his left hand towards her picture and prayed the most powerful prayer for your sweet baby! I am rejoicing and doing a victory dance with y'all this morning because of the progress she has made! Most of all, I am praising our Creator, because if He is for us then who can be against us! Praise be to our Jesus!!!!
Choked up from the above comment. What a wonderful happening from a 6 year old boy. Praise God.ReplyDelete
Prayers from Pa.for Clara and Family
What wonderful words!! I found your sweet family through Margaret Wages....so I too, am a friend of a friend. I pray for you and for Clara several times a day. What a blessing it has been for me to find your wonderful blog.....God is amazing. I am awed by your faith and your strength. Blessings to you all and kisses for Clara!!ReplyDelete
Chrissy and Robert, Jim and I and Clara's Prayer Team/Fan Club at Christ Church, Winston-Salem are all praying for sweet Clara Mae and her doctors and her procedure this afternoon. What an amazing God we serve! Just reading all the prayers going up..not just from around the corner but also from Australia! Clara has an international family of prayer warriors!!! She has been held in His Hand from Day One! To God who does more than we can "ask or imagine" EVERY DAY! Love, Karen K (and JIM!)ReplyDelete
Just saw on Twitter that she is off ECMO!! Praise God! I don't know any of you, but have followed your blog since the day she was born (via friend of a friend of a friend)and have been praying for you all. This news has made my day. I'm crying tears of joy! Prayers still going up...but Oh! What a big milestone! So happy for you all and this sweet child!ReplyDelete
Such a HUGE day for Baby Clara! So happy she is ECMO FREE! Words that at one time you could only dream about. What a sweet day! Praying for the impact as this huge hurdle settles! =)ReplyDelete
Celebrating and praising with you!ReplyDelete
Way to go, Clara! You and your parents inspire me! What a gracious God we have!ReplyDelete
WOOT, WOOT! Great job, Clara! I was reminded of a verse while I was reading this post..."being confident of this, that he who has begun a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:6. Can't wait until the next post!ReplyDelete
I have goosebumps! So excited for all of you!!ReplyDelete
Go Baby Clara!! Another miracle in the making!!ReplyDelete