Today was what the nurses described as a "boring" day. And it's just what we love and want many, many more of. Clara stayed very stable, very peaceful and very calm today. Her numbers were all relatively okay. The nurse and respiratory therapist check her constantly and are always tweaking little things here and there like more platelets or less fluids or more medication, but basically she's right where she's supposed to be. Her blood sugar levels were a little jumpy today, but I don't think they ended up giving her any insulin. They did have to give her some extra fluid last night and told us to expect her to be puffy and swollen today. She was a little more swollen in her face, but not anywhere near as bad as I was expecting. Other news: she's off of dopamine completely and her blood pressure is holding steady (yay!), there are rumors that she might get a little of my colostrum tomorrow (I didn't think they'd feed her any "real food" until after surgery, so that was very exciting to hear!), and if she keeps doing as well as she's done the past two days, we could potentially be looking at surgery mid-week next week. All very good news! Please continue to pray for good, boring, peaceful days like today and that she would keep being protected from all the complications that can come with being on ECMO.
I was discharged from the hospital today (Alleluia!) and we were able to spend a few hours together at Brenner's this afternoon. This was the first time all three of us had been together since the day she was born and we finally got our first family photos.
We spent time talking to her and reading to her and singing to her. The nurse made her that precious little white hairbow out of some gauze. We think it's adorable. She also got a "spa treatment" this morning, otherwise known as a good lotion rubdown. It's made her super-soft skin look much better because it was quite dry yesterday. Here are a few videos (I hope!... I haven't tried uploading video to the blog yet!):
We're doing our best to update the blog each evening, because you've all been so supportive and loving and we want to share our ups and downs of each day. But for updates in between, or if we skip a night or two, Robert has also started a Twitter feed for Clara. I'm not much of a Twitterer (is that what you call it?) myself, but maybe I'll figure it out and get on board. You can follow @PrayForClara.
We are thrilled to see Clara stabilizing and making progress and giving us hope for a bright, clear future. We're also humbled and excited and encouraged and amazed by how many people are praying for this tiny girl. God is being glorified through her little life already and we are so proud to be her parents. We'd rather her not have this pain or burden, but it's been a source of incredible joy to see how God is using her to touch people's hearts and renew spirits across this country and world.
Indeed, let the little children come to Him.
One of the benefits of being on the west coast--I get to see even the middle of the night updates! I love the bow, and I love seeing the family photos. My family and I are praying for you all. Love,ReplyDelete
NO DOPAMINE!!! :D Surgery next week. GO CLARA! GO!!! GO!!!ReplyDelete
Love the music and the stories.
I am up early after a feeding and had to check for an update. Your family is lovely. That is a great picture. I am so glad that the day was boring. I will pray for many more of those. I am praying she gets that milk today! It is amazing stuff. By the way I think Paige has caught on to the fact that nursing time = pray for Clara time. She now nurses like a 5 month old rather than a 15month old. Maybe she is looking out for her baby gal pal? Love y'all.ReplyDelete
Brooke sent me the link to your blog and I want you to know that I am praying SO much for precious little Clara and for both of you. I was thrilled to read last night's post and to see the pictures and the videos. May today be another "boring" day! Betsy WestReplyDelete
I had such the privilege to drop a little something off to you all from Brooke and Derek yesterday. Hope it allowed you to feel the Love and Prayers that are being pored over Clara and your family. The best part for me was the nurses let me see your beautiful girl and I just stood and prayed over her. I left with such a overwhelming feeling of the Holy Spirits presence and tears in my eyes. We serve such a mighty God!!!Thank you for sharing your life with us and letting us see God's faithfulness. Praying for a fabulous and "boring day" for sweet Clara!!!ReplyDelete
Welcome, Clara! I have been keeping track with the great blog and praying like crazy for your success. You have no idea what your life already means for the kingdom- such an important job already. Let God's will be done, but I am asking and begging Him for you to become a living reflection of His glory. Prayer warriors are on it. Go, go little girl- you are adorable!! Cannot wait to meet you in person. Karla FrazierReplyDelete
First Bible story,first lullaby, first of many to come! Watching through the week with great hope and prayer for successful surgery! Love and God's peace on each of you!ReplyDelete
Love your family picture:) Praying for you, Robert and sweet Clara. Jesus does love little Clara, always has and is with her and you constantly. He is giving you comfort, love, blessings and arms that you can rest in. You guys are in such good hands! Thank you for the updates and like you said in the video there are so many people sending prayers your way. Here's hoping for another boring day!! ToryReplyDelete
My name is Erika Minch, and I found your blog from Rooting for Ramsey's blog. I am from PA, and a CDH mother to Logan. I keep finding myself checking your blog for updates. We are praying for Clara and your family. Our similarties are amazing. I am also a teacher (4th grade) and love my job!!! During this time, please feel free to contact me anytime. The support and love I received during our hospital time was amazing, and I would love to extand that to you and your family. Prayers and Strength.
What a precious family you are! We will pray for "boring" days:) Love and prayers, Mary Ann & ChuckReplyDelete
I am very happy to read about the "boring" day and hear the progress that Clara has made - esp. in coming off Dopamine! Thank you for taking the time to update the blog so we know Clara's progress. Chrissy, you look great and I am thankful that the 3 of you can be together. Know our family will continue to pray for all of you.ReplyDelete
The Buckner family
I really enjoyed hearing you read and sing to Clara. That was very touching. I am praying for you anr your family. God is in control!ReplyDelete
Chrissy I am so excited you have been released and able to spend time with Clara. I just finally got to read the update and I was praising and thanking God at least after every sentence - I actually put you all on our SS prayer list this morning. We will continue praying for all of you and that God will continue to bless you with more days like today and continue preparing Clara and the doctors and staff for Clara's surgery and that it will be scheduled in His perfect timing. I am just am so thankful to Him for this great news. May all the glory be His. Much love to all of you.ReplyDelete
My daughter sat on my lap as we watched you read the first story to Clara. It is so obvious that you have dedicated Clara and her future into God's hands and that you have already decided that he is a GOOD GOD all the time before you even know the outcome. Your faith is like a mighty oak planted with roots that run deep and provide stability and the assurance of a future. Though I only know Grandma, your faith has encouraged me, your story brought tears to my eyes, and your dedication to HIM has made Clara's life a living testimony of what it means to trust and glorify HIM in all situations. I am so honored to see into your pain.....may God bless and keep you, may he cause his light to shine down upon you, and may the fellowship of the Holy Spirit be with you as you travel this journey and may Clara be the apple of His eye.ReplyDelete
Robert and Chrissy:ReplyDelete
I have never met you, but I know Liz. Ever since I have heard about Clara, she has been in my prayers. I have been keeping up with your blog and want all 3 of you to know that my thoughts and prayers are with you. I hope Clara gets to eat and it is great that the dopamine is off! That is exciting news. Most of all the uneventful days are the best! I'll continue my prayers and thoughts. Brie
Robert and Chrissy,ReplyDelete
First things first!! CONGRATULATIONS! SHE IS BEAUTIFUL. Presley can quote her birth time, weight and length. We are all cheering for you!
I have prayed daily for you three, from the very beginning of Lil' Miss Clara's diagnosis. There is no way to prepare you for all this, I know. Rest assured there is divine purpose in all God does. He will not forsake you. "Come to me, all who are weary and burdened, and I will give you rest." (Matthew 11:28).
I have seen first hand, as a former PICU RN, in that very unit where Clara has a bed, what you are going through. I have held the hands and hearts of many mommy's and daddy's just like you. Remember to take care of yourselves. Clara is in the best hands. God will lay his Grace upon all who touch your lives. Chrissy-so glad you are pumping, she will need your milk very soon. It will strengthen her and you as well. Robert, take care of your "girls" but also of yourself. You are all running the "ECMO marathon." It is a roller coaster ride, no doubt, but an amazing thing indeed. Pray as a couple and lean on one another. No one but the two of you can understand how this feels. Love each other and nurture your marriage and Clara.
I will check in often. Presley sends her unfailing love and adores your beautiful baby girl. We especially love her chubby cheeks and curly hair. She is precious-a beautiful daughter.
Love to the three of you!
Nicole G. Jones