Today was FANtastic. Clara was sating high all day long. Like hanging out at 100 for hours at a time high. And even with repositioning, diaper changing and a huge event where we totally changed out her mattress and all her bedding (goodbye puffy ECMO tempurpedic mattress) she stayed high and didn't even require as many PRNs of extra versed (that's the sedative). I think the lowest I saw her sats go all day today was maybe 94 or 95. AND, we got rid of the Nitric this evening while she was snoozing away and she didn't even notice this time. Kept up sating high like she'd been all day and her blood gases two hours later were some of the best I've seen her have. Can you hear the pride in my tone? Because I'm pretty stinkin' proud of her. She is really doing great.
With that said, we still have some things to overcome. The chylothorax that we mentioned a couple of days ago is probably going to set us back a bit. I think she'd be in good shape to be extubated in the next day or two if it weren't for that, but they don't want to extubate until we're sure that's totally resolved. The treatment so far has been to stop feeds. The plan for right now is to resume feeds on Wednesday, but instead of being on breast milk she will get a special formula called Enfaport. It has high levels of protein and something called MCT that help babies absorb fat differently so it won't leak into her lymphic system. Now, don't panic - it won't be forever. Hopefully we'll gradually move to a half Enfaport/half breast milk blend and then back to all breast milk. My hope is that we can get through all those stages before we begin oral feeding so that I can still introduce the breast to Clara before a bottle. But we'll see.
Rounds this morning went well. The new attending neonatologist on rotation right now is Dr. Welch and she seems wonderful. Thanks for your prayers about that transition. We continue to be so grateful for the excellent medical team at Brenner's and the wonderful care that Clara is receiving. We successfully got Clara off of Nitric Oxide today which was the main goal for today. We also weaned her hydrocortizone down by another 10% and her blood pressure continues to tolerate that well. She's still getting Lasix (now down to three times a day instead of four) and continues to diurese well. Her new weight (which may not correlate exactly with her old weights since it was on a different scale) is 5.1kg or 11.2 pounds. We're estimating her "dry weight" at 4kg now, so just 1 more kg to go! Come on, Clara! They still need to change her IV access. The hope is that sometime tonight they will place a picc (peripherally inserted central catheter) line in her leg with a double lumin (in case you want to know the nitty gritty: we have to have two lines because they cannot run lipids with versed and that's two of her main drips). If they cannot get the picc line in, they will do the broviac line that I mentioned yesterday. A picc line is a little less intense (a nurse practitioner does it instead of a surgeon) and a safer option overall. So, we hope that will work out. We have also requested a Physical Therapy consult to come help her with her neck and head because after 22 days on ECMO and her head in the same position she's got a crick in her neck that I wouldn't wish on my enemy! I let them all know at rounds that my thirtieth birthday is Saturday and the only thing I really want is to be able to hold my baby girl for the first time. Nothing like imposing totally artificial and medically unrelated deadlines, right? We'll see if it happens....
So, that's about all the medical updates. In addition to being a total rock star with her saturations and not getting agitated at stimulation today, Clara was also very alert. We had so much fun together today! This afternoon she was wide awake from about 2:00PM-5:00PM. We read stories, played with a lamb finger puppet she got for Easter, played with a rattle, watched her mobile, talked about life, and I sang every single camp song I could think of. Then she was still awake and I was out of ideas. But boy was it fun. I just soak up every last minute with that little girl. We know that she'll probably have some developmental delays from being in a bed and sedated for so long, but today she was acting more and more like a typical one-month old. She could track with her eyes, was responding to the sound of my voice, and really loved looking towards the light out the window. Quite frankly, I think she may end up being one smart cookie.
Here are a few quick photos from today:
Watching her mobile
A rainbow bow, for a very bright day!
Looking out the window. Planning her escape, I'm sure.
Kisses from Big Daddy
Flipped around in her new bed position!
Tiny hands next to Big Daddy's finger
Snuggling her lovey
Here's her Nitric Oxide machine. IT'S TURNED OFF!!!!
And here is some video of Clara watching her mobile:
Please pray that Clara will continue to rest peacefully tonight, that her chylothorax will resolve quickly and we can resume feeds soon, that she will be able to be extubated soon and that the continuing weaning of her remaining medications and drips will go well so that we can be moved to Intermediate Care and begin the next stage of her recovery. We are so thankful for a wonderful day.
Two things-- 1. It's a good thing I'm not working this year-- I can't go to bed without my Clara update! :) 2. Precious, precious video clip! I love watching her eyes track those animals... and your narration cracked me up. :) I think your birthday request was definitely reasonable and knowing you, you'll find a way to make it happen! Hugs, prayers, and sweet dreams tonight!ReplyDelete
Dr. Welch is AWESOME!! So glad she is doing so well. :DReplyDelete
SO glad to read all these wonderful updates. I can't tell you how often in the day I think of Clara and pray for her continued healing. Also - she is such a cutie! What a precious face. (I also love her rainbow hair ribbon :) Praying for a VERY happy birthday for you, Chrissy!ReplyDelete
Praise God. We love her so much just from watching her on your blog. Can't even image how full your hearts are!ReplyDelete
I'm so glad to hear how well she's doing! Keep up the good work Clara! I'll still be praying for her. Thanks for the updates and the beautiful pictures! :)ReplyDelete
We just love the video's and she is looking great. So glad you all had a supper day. You go Clara.ReplyDelete
Randy and Annette
Praying for lots more days like today! So glad Clara had a great day....you all deserve it!ReplyDelete
So thankful this morning for the God who is the creator of the miracle of life and the daily miracles associated with living until tomorrow. Clara is my daily reminder of God's grace and love for ALL His children. The video brought pure joy to my heart-she is a fighter and she is loved!! I am praying to God for your birthday gift to be fully realized, Chrissy!!ReplyDelete
Miss Clara, You have made my day and it is only 6:30am here in Louisiana. I start my day with Clara prayers and updates. This is such wonderful news this am. She is indeed so alert and bright in her video. Love her bows. Don't tell me we girls can't make a fashion statement no matter the circumstances. Chrissy, glad you're feeling better. Love to all of you and prayers, prayers, prayers,ReplyDelete
What a great way to start my morning today. So so happy and thankful in my heart right now.ReplyDelete
My goodness, she looks absolutely gorgeous and so alert!! God Bless her, and all of you. What a strong family you have!!ReplyDelete
Robert and Chrissy, like so many who post here, we begin and/or end our days with a Clara update. Emma always wants to see pictures, Graham is getting the weight check every day, and we all pray for her multiple times throughout the day. My heart is so full this morning, reading this exciting post. Your girl is simply adorable (love the pictures of her plotting her escape and snuggling her friend), and you daily provide such tangible reminders of what it's all about. Praise God for the miracles He has already accomplished and for the work He continues to do in all our lives, through precious Clara. Blessings for another stellar day.ReplyDelete
Linda Smith & family
I am SO inspired by your story and by your strong girl Clara! A friend posted a link to your blog on Facebook and I have been following for the last few weeks. I think and pray for you all daily. You are all just so strong. Clara is absolutely beautiful.ReplyDelete
Love this! What a great day. So proud of Clara AND her momma and daddy. Love you guys - BrookeReplyDelete
Yay for Clara's improvements! Also, I hope your mastitis is clearing up well. I applaud you for your dedication to pumping for her! I have nursed all my birthchildren & am happy that Clara has been able to get some of that liquid gold from you. I know it's been especially helpful to her in her delicate state & will be in the future too once her chylothorax resolves. That said, I've also given formula to my foster/adoptive babies & thank God for it in those cases where babies aren't able to have Mama's milk for whatever reason. Either way, be proud that you are doing such a wonderful job for her, being her advocate & making sure she gets what she needs when she needs it. God bless & I pray that the day comes soon when you can hold her, love on her & nurse her directly with her Mama's own "homecooking". May the day come quickly when she can fall asleep on your chest with a blissfully full tummy!ReplyDelete
Clara looks like she is really doing super!!!!ReplyDelete
Such a blessing to see this little Super Girl doing so much better! The video is just precious, as are all the beautiful photos of her with her eyes wide open! Continued prayers for you all. I introduced our almost 4 year old and 7 year old sons to Clara via the blog the other day, and since then, they've remembered you all in their prayers each night, too. God has used your family already in amazing aways to strengthen the faith of so many, and I feel in my heart this is only just the beginning of amazing things He has in store for the Hardy clan!ReplyDelete
I started reading your blog about two weeks ago after a friend posted a link on Facebook requesting prayers for your family. Now I'm following your story and praying every day!ReplyDelete
Oh Chrissy, how I am praying for your birthday wish to come true. That will be a present to ALL of us, too. I KNOW that baby Clara is trying so hard to give her mommy such a gift. The best things come in small packages, right? That small package of yours is a true miracle! One that you are going to cherish for a lifetime!ReplyDelete
I've been praying for you, Robert and Clara ever since the word went out (through KYG). I had a preemie and we spent our early days in the NICU and pumping, pumping, pumping! I've been praying earnestly and continually for you all and am so glad to see such terrific progress!!!! I KNOW these little steps matter so much, and I'm praying for you all continually. My premie (now 20!) and I actually visited the NICU yesterday and saw some of his old doctors, therapists and nurses. It was an interesting reunion, especially with you and Clara so deeply embedded in my heart and mind these days. My preemie is considering med school right now, with thoughts of becoming a pediatrician/neonatologist, which he announced to me while on the phone after we prayed for you all during Clara's prayer watch. My prayers have been that one day very soon, these all consuming days are a memory that only looking at her faded scar will atest to and Clara's future is very bright! One thing we spoke about yesterday was the milk bank started just before I left an overflowing basket of milk behind, and how they are now a national milk bank and share the milk with others in need--I'm sure your milk will go a long way! I will pray for you and Clara to experience success in nursing very soon too! I wish you the happiest of birthdays!!!!
A few verses I think of for you: Philippians 3:14 and 4:13; Jeremiah 29:11.
Much love to you all!
I am praying daily for you, your husband and Clara! What a great post. She is just lovely.ReplyDelete
Praying for healing for you and for growth and strength for Clara.
Love to you all!!
I believe you and Robert can hold Clara in your arms in just a few days. Each day she looks stronger. Sandra CurtisReplyDelete
Loved watching her on the video! Hope Clara continues to get stronger every minute. Glad her stats are better today!ReplyDelete
The long day just melted away after reading about Clara. Awesome awesome! To god be the glory. What a precious gift she is. KarlaReplyDelete
This is just wonderful news! So happy for the progress Clara has made!ReplyDelete
Once again, thanks for updating us daily, as we think of and pray for sweet, precious Clara! Like many others, I have to have my daily dose of Baby Clara Mae Hardy...Love ~ Mary AnnReplyDelete