We are truly rejoicing in this wonderful, huge step! Although we know there's still a long road ahead of us, we feel like the immediate life and death situation that we have lived in for the past three weeks has been lifted. We will still have medical challenges and certainly some more setbacks along the way, but being able to be released from this significant life support system is a huge, huge step in the right direction. We're not done with the miracles we need to see in Clara's life, but we know that today we truly experienced a big one. We would never have thought a week and a half ago that we would even be hearing the words "decannulate." Today for the first time we heard doctors using "when" language instead of "if" language. Things like, "When she goes home...." or "After you're out of the hospital...." It is so freeing to feel that we're on the right path now and that we can begin to envision the reality of our future with Clara.
It would have been nice if we could have just sailed through today with nothing but the joy and relief that we felt after her procedure and not face our next hurdle quite so quickly, but here we are with our next prayer request. A renal ultrasound this afternoon showed that Clara's kidneys are sick. We suspected that there might be something going on with them because her urine output the last 24 hours had dropped significantly and some other numbers that show kidney function were also elevated. The ultrasound confirmed that there are some flow issues in her kidneys. She has also had low blood pressure since coming off of the ECMO pump. For now, they are stopping diuresis to try to give her kidneys a chance to rest a little and have added a couple of other medications (increased epinephrine and dopamine) to boost her blood pressure, as well as giving her some more blood since her hemoglobin was low. Hopefully all of these things will improve her kidneys and get them healthy and working properly again. The doctor tonight said that kidneys are one of the most resilient organs in the body, so we are hoping that hers certainly will be and that she'll bounce back from this quickly to resume diuresis. She's still very very very puffy and we need to get those fluids off in order to continue addressing long-term issues like pulmonary hypertension and weaning off her long list of drugs.
The next day or so Clara will have to adjust to life off of ECMO. She is going to have to learn how to manage many body functions that we were controlling for her, like temperature and blood flow. We know that she's been through a lot, so we are asking God to give her rest and strength to continue fighting the rest of her battle.
We will be moving out of the PICU soon and back to the NICU. While we know that the NICU team is wonderful, we will deeply miss the friends that we have made in the PICU (and will miss the space and privacy of a private room, too). But this is a good step for Clara, so back to the NICU we will go.
I'm trying not to get my hopes up too much, because we'll have to see what kind of shape she is in and how she is responding to external stimulation, but there's a chance that Robert and I will get to hold Clara for the first time tomorrow. If it has to wait awhile, I can wait. We don't want to upset her. But it sure will be sweet to have her in my arms soon.
I'm emotionally spent today. It has been another one of those days of extreme ups (mostly ups!) and some downs too and it sure is taxing. But we are so very proud of Clara and what a momentous day this was for her! Thanks to the many of you who have prayed with us today, celebrated her successes with the same joy and exuberance, and are shouting praises to our Lord for His good works! "Thank you, God" is all we can say, over and over again, and it doesn't come close to being enough.
Rejoice in the Lord always: and again I say, Rejoice. Philippians 4:4
|Clara's big ECMO cannulas|
|Tubes full of blood|
|Another shot of the ECMO pump|
|See how much room we have now?|
|Big empty space. Bye, bye ECMO!|
|Cannulas gone. In their place, a new triple line for drugs|
|It's even easier to get in for those head kisses now....|
|That sweet little right ear we hadn't seen in three weeks.|
Prayers for tonight -
- MANY MANY praises for today's miracle. Thank. You. Lord.
- Blood pressures to rise some overnight.
- Clara's adjustment to life without ECMO
- Improved kidney function without further problems
- Swelling to go down/ resumed diuresis once kidney issues are resolved
- Successful weaning of drugs in the days ahead
- Continued progress with reducing pulmonary pressures
- Continued success with breathing on the ventilator and reduced vent settings in the days ahead....
- We can't say enough: Praise and thanksgiving for all God is doing in Clara's life and in ours too.
Rejoice to God on the Highest! God bless you Hardy family, take a night to relax! Miracles happen!!!!! Love and Blessings The Welsh FamilyReplyDelete
I can go to sleep now, now that I've had an evening update on Clara. I seem to wake up a lot lately in the night and I feel God prompting me to pray for Clara..so I do. Lots to continue praying for as I close my eyes but pray I will! Thank you God for the hope and joy you have given Robert and Chrissy today. May little Clara rest up for the next battle and may her fighting spirit soar! We love Clara, Lord, but we love you more and remind ourselves that you are in control and Clara is in the palms of your loving hands.ReplyDelete
Whew, what a big day for all of you! Coming off ECMO is a very, very big hurdle, rejoice! With some time and medical attention, the puffiness will fade away. I bet she will look all different next week this time!ReplyDelete
Hugs to all,
I read your blog and then laid my hand upon your prayer requests praying to our Lord and Savior, the Great Physician, to continue to lay his hands upon Clara. Love from Elberton, Mary AnnReplyDelete
Again,I say rejoice!!! Another blessing for the Hardy family. I will continue to pray for little Clara's fighting spirit and for rest for mom and dad.Though I do not know you,sharing your faithful journey ministers to so many! Thank you for taking the time to share your beautiful accounts of Clara's life...one miracle after another! And again I say rejoice!ReplyDelete
wow--her journey has been a lot like my Camdens...he did 21 ECMO days and then had the kidney issues, but it resolved quickly. Prayers for precious Clara. This brought tears to my eyes to see her off ECMO. I hated it, yet it saved him. As an ECMO team member said to me once, "100% chance of death for Camden w/o ECMO, 60% chance w it..." WOW hated that we had to have it, but thankfully it was there for us when needed. Praising God with you tonight....and THANK YOU for updating!! ((hugs))ReplyDelete
Devon, mom of of Camden
May you and Robert rest well tonight. God of all creation has done a mighty work today in the life of Clara. He will continue to use your precious daughter to bless many lives. God's purpose for her life is already being realized in the lives of those who read your daily blog posts...drawing us closer to God through a more committed prayer life as we join with you in praying for one miracle after another and receiving the blessing of experiencing God's answers to those heartfelt prayers. Thank you, Chrissy for inviting us to join you on this difficult journey. You have enabled us to see the grace and love of a merciful God.ReplyDelete
Rejoice! The power of prayer, and the little fighter you have! ECMO is such a blessing, and such a fear! And her kidneys will resolve to complete resortation with prayer! My daughter went into complete kidney failure and they work now!ReplyDelete
I'm so happy! This has made my day!!! I love your girl and I am so thrilled to see that ecmo gone, (though it is a life support, it looks very frightening and intimidating!!) god bless you and your little fighter!!!ReplyDelete
I was so blessed to be one of Clara's ECMO therapists on the evening/night shift. I was with her the first night in NICU and followed her through to ECMO. I was with her last night as she was capped off and she was a very good girl!! I felt confident she would be decannulated and I was so thrilled when I called back and she was off pump! Rejoicing with you all! Praying still!ReplyDelete
We love y'all! Just couldn't help but grin from ear to ear when Mary Ann updated us at church today. Can't wait to meet and hug on Miss Clara! Plus, Brennan has been practicing his kisses :-)ReplyDelete
Praise God! I'm am so excited for this first huge step. Praying for her and you guys. May you all have a restful night. All my love, SarahReplyDelete
We are so happy to see these new pictures of her space. So happy to hear that she has been able to come of the machine. The, when she goes homes, sounds so good to our ears too. We will be at church a little later this morning and we will be praying for her as well as I will put her on our church prayer request. Peace and God's love to you all.ReplyDelete
Love, Randy and Annette
What wonderful news. Karen texted throughout the day and each time was more exciting. Such a fighter. We continue to thank our wonderful God and to ask his continued healing for Clara. Robert, kiss the top of that sweet head for me. I can't wait to meet her. Such a joy to share God's love for her with you.ReplyDelete
Storm clouds have cleared away and the sun shines bright on ALL of us today .... INSIDE and outside the hospital. What a glorious way to celebrate Palm Sunday! Thank you, baby Clara and THANK YOU, GOD!ReplyDelete
Hallelujah!! So glad to hear she was decannulated and will continue to pray for her. Hope you get to hold her today.ReplyDelete
Praise God !!!!!ReplyDelete
Praying for Clara every day. Thanks be to God for getting her off ECMO! Hope to see reports of more great progress soon.ReplyDelete
We are continuing our prayers for your precious Clara, as well as, for all of you! I have become addicted to your blog and check on all of you often! Thank you for sharing your thoughts and feelings with those of us who are standing with you in spirit. I am sure God is blessing you with His love and peace and using you to reach those who need Him in their lives! May this Holy Week be a Holy Week for Clara, as she continues to improve!ReplyDelete
With much love to all of you!
Carol Anne and Gallivan family
I was so glad to read about baby Clara's success. I have followed your posts since her birth and have included her in my prayers daily. Your faith and her wonderous life has been a blessing to me. I will continue to pray that she gets well and is able to go home soon. Lots of love and prayers for both of you and Clara.ReplyDelete
Kidneys also function because of heart beat, I never knew this until about 5 years ago. ECMO can and sometimes does - confuse the kidneys because it takes over the heart/lung function. Now that she is off, her heart is regulating - may those kidneys rebound.ReplyDelete
Still keeping you all in my thoughts and prayers and Lung Function and Kidney Function Chants!
Absolutely thrilled for you guys and Baby Clara! When Carter came off of ECMO, we still had to overcome the obstacle of CDH repair surgery, but Clara already has that behind her! Her little body just needs to figure out how to regulate those little kidneys and survive without all of those happy meds! What a week it's been for you guys!!!ReplyDelete
Praise God!!! Continuing to pray!ReplyDelete