You may have noticed on yesterday's photos that I didn't quite get the rounded corners down pat in my editing... I tried again tonight, but I'm still getting those white tabs and I'm too tired to re-do them all. I love taking photos, but the processing end is not my strength. Someday maybe I'll figure it out....
Regardless, here are a few images from today. Hope you enjoy!
|Blue bow today (to match two of her favorite nurses - see below!)|
|"C" is for Clara|
|They changed her tape today, so I got my first real peak at her top lip, uncovered. I know I wrote the other day about how much I'm loving those sweet lips, but my oh my. They are so precious! And those uncovered cheeks too! I can't wait to get all the tape and tubes gone....|
|Amanda and Clara|
|Amanda, Holli and Clara - still smiling at the end of a long 12 hour day...|
Overall, we had a good day today. Clara spent a little over 30 minutes "uncapped" from her ECMO machine this morning (doing the work of oxygenating on her own) and did a fabulous job with it. We probably could have gone even longer, but the doctors decided to give her some time on higher ventilator settings first. We were hoping to uncap again later today for a longer run, but there are a few things that have to be dealt with first, so we've postponed until tomorrow. We'll hopefully get her ventilator tube changed out tomorrow morning because it was leaking today and needs to be fixed before coming off ECMO. We also need to make sure that some bleeding that started today has resolved (probably a result of a failed attempt to change her OG tube - in her stomach - to a TP tube - which would have gone into her intestines, but we were unable to get it placed correctly and in the meantime may have irritated her esophagus or stomach a bit.) Hopefully both of those things will get resolved pretty early tomorrow, we can uncap again and see how long Clara can go on her own. If she makes it to 24 hours and her blood gases still look good, we'll take out her cannulas and kiss ECMO goodbye! Please continue to be in prayer for her, specifically about this important transition, over the next couple of days. We'll keep you posted on "the dance."
OOHHHHH!Soooo cute!!! Can't wait for you to hold her and kiss, kiss, kiss sweet Clara!!!!ReplyDelete
Robert...what sweet kisses those lips are gonna give you one day! She is absolutely beautiful!! I continue to pray for Clara each and every day.ReplyDelete
Ohhhh dear. I love love love her little lips and cheeks. So sweet.ReplyDelete
What a beautiful, sweet baby girl! And what awesome progress she is making. We are all so proud of her and very encouraged!ReplyDelete
Beautiful, pink cheeks and kissable lips. I know you are all showering her with tons of love.
Our prayers are with you always! Good luck tomorrow!
Love you all!
So glad to hear the work God has done, the progress that Clara has made, and the impact her/your lives are having.ReplyDelete
I think you do a GREAT job with your pictures. To see Clara is to love her! Thank you for sharing your journey with us. I am one of those who have grown through Clara's story. You can count on my diligent prayers through each day and night. I am amazed at how God is working! Praying for a wonderful day tomorrow and thankful for all that has happened in the past week!ReplyDelete
I have been following your blog after Lauren Thomas posted it on facebook. What a sweet baby girl with precious parents. God is so good and faithful, and I am blessed to see how He is being glorified in you guys. I check in with you every day and am lifting you all up in prayer.ReplyDelete
I can almost feel your smile and hear your heartbeat of love. How adorable is your precious little girl! A LOT like her mommy! Your story is about to move away from that hospital and begin a glorious journey. Here's to The Hardy's and all their dreams coming true!ReplyDelete
Love the picture of that sweet little face with the tape off. She is so beautiful, I can't wait to see each piece removed as she continues to fight, what a little Turquoise warrior! Continue to lift all of you up in my thoughts and prayers.ReplyDelete
She is SOO beautiful. I praise God for every day that she gets a little bit stronger and every baby step forward. I faithfully come to your blog every day to see how she and you are holding up. Praying for good night tonight! =)ReplyDelete
Clara is beautiful! Slow and steady win this race - keep up the good work Clara! Still sending thoughts, prayers and Lung Function Chants!ReplyDelete
I have a girl, who was an undiagnosed RCDH. She turned a yr in August.
Your comment on loving the lips-- I had the same reaction to seeing the tape off the lips and nose. <3