I am going to do my best to write this quickly because Robert and I are going to the minor league baseball game tonight with my parents and my niece. Clara had such a wonderful day though, that I needed to share it with all of you faithful followers and pray-ers. Have I mentioned to you lately that your prayers work? Because they do and they are. Daily. We remain so very grateful. Please keep them coming.
Clara is continuing to tolerate her weans very well. Her oxygen is now down to one liter of flow and she has been between 25%-27% for 24 hours now without requiring an increase in FiO2. Remember, room air is 21%, so we are getting very close! She has to be under a liter of flow to be moved to intermediate, so we're getting closer to that milestone too! She has tolerated that wean very well with no increase in respiratory rates or drops in her O2 sats. She is tolerating the wean of morphine well at this new rate (down by 0.1 mg every other day; currently at .67 mg) as well and seems to be doing even better on the ativan than the versed. She's awake and alert more and more now and we are really enjoying her precious smiles, her babbling voice, her tracking eyes and her sweet sweet face. We've also been condensing her tube feeds so she now gets fed for an hour and a half continuously and then has an hour and half with it completely off before the next feed.
Last week Speech Therapy came to work with her and said that while she had some pretty good mouth and tongue reflexes still that she did not do very well with the "paci dips" (that's where they put some milk on a pacifier and have her suck on the paci). So, we thought that we might still be a long way away from successful oral feeds. I've been continuing to offer her the breast, but she had not really shown great signs of progress there, either. Everyone kept saying she was still too weak, too sick, too tired and that she would have an oral aversion from all the time she spent intubated. I just didn't believe it. In my gut all along I've felt like she would be a good feeder which is part of why I think I was so disappointed and discouraged to hear them continue to say that she wasn't going to be able to do this. Yesterday when I offered her the breast she actually latched on and sucked a little bit. Since it was late on a Sunday, nobody else was really around (lactation consultant or doctors or speech therapy) to see it, but I really felt encouraged that she had made some good progress and that feeding would happen sooner than everyone expected. Today I had the lactation consultant (Martha), whom I've really grown to love and appreciate, come and watch when I offered Clara the breast. I was afraid she wouldn't do anything with an audience and that they wouldn't really believe what had happened yesterday. But today she did so much better than yesterday even! She latched on and sucked and swallowed for five to ten minutes! When I pumped afterwards, my guess is that she actually got between 10 and 20 ml of milk! She didn't get totally exhausted, she didn't fuss or cry or try to spit it out. She just did great. I was crying tears of joy; Martha was kissing me and calling out to everyone in the unit, "Come here! Come look at this!" It was so incredible.
Now, all that to say, we will still have a road ahead of us with feeds. Even though she didn't choke or aspirate at all during the feeding, she did throw up a little bit about thirty minutes later, during physical therapy. It's always hard to tell what the trigger might be for her vomits and spit ups, so it may have just been that she got a little extra milk and it was too much food. Or it may have been that she wasn't wild about the position that she was in. She only nursed for a few minutes and she didn't get a whole lot of milk, so we still have work to do and progress to make towards building up where we want her to be. But this is such a great step and it fills me with hope and promise for the future. In many ways, I think I am as excited today as I was on the day of her surgery or when we decannulated or when she was extubated. Regardless of the doctors' predictions about her ability to eat, I just feel so hopeful and optimistic that she will continue to surprise us all and defy our expectations. After all, that's what miracles are all about, right?
I am so excited and happy to say once again, loud and clear, TO GOD BE THE GLORY! It is so empowering and humbling and moving to watch how He is continuing to work in the life of our baby girl and how he is using the prayers of so many people to slowly reveal a miracle in our midst. I just can't say enough: Thanks be to God.
* I do have some sweet photos from the last two days, but I've got a baseball game to catch. If I get home before my last pump for the night, I'll upload them in a separate post.
I am overflowing with joy! Yay for Clara!ReplyDelete
Woohoo!! I distinctly remember what it felt like to successfully nurse for the first time!!! What a wonderful thing! GO CLARA!!!!!!ReplyDelete
I'm so excited for you and Clara. Nursing is such a wonderful bonding time. I found it to be relaxing and the best part of having a baby. My sister had a needle point/cross stitch picture with this poem.. "Cleaning and scrubbing can wait til tomorrow. Children grow fast we've learned to our sorrow. So quite down cobwebs. Dust go to sleep. I'm rocking my baby. And babies don't keep." I used to change it to" nursing "instead of "rocking" When I was nursing nothing else mattered. I hope Clara decides that's the best thing in the whole wide world.ReplyDelete
Thanks be to God, I am crying tears of joy for you at this very moment.ReplyDelete
Tammy Van Duyn
"I just feel so hopeful and optimistic that she will continue to surprise us all and defy our expectations. After all, that's what miracles are all about, right?"ReplyDelete
Absolutely, Chrissy!!! What a blessing to see God at work so vividly in Clara and her family's life! Too many people don't look for those little miracles and miss out on so much with their cynicism; it is all about expectant prayer!!!
Yay, Clara! Yay, Dash! You can just enjoy the buffet longer if their is a rain delay!!! Love, Karen (and Jim!)
Aww!!! So happy! It truly IS a miraculous Monday! I know the frustration of nursing and it is such a blessing when it works! Enjoy every sweet little moment! Still praying! :)ReplyDelete
Have a blast at the Dash with everyone!
What a difference a day makes, huh? I see that GOD and your prayer warriors are seeing you through. So glad that you are off to have some fun. Soon the THREE of you will be going EVERYWHERE TOGETHER!!!!!! So hope our paths cross often and that you will keep us updated on Clara Mae long after she leaves the hospital .... promise????? I need my daily Clara Mae fix :-).ReplyDelete
So glad Clara had a good "showing" with her nursing! I have been praying specifically for her feeding...infections...and weaning off of the pain meds. I will continue to pray without ceasing for Clara ~ Love to you and Robert from Elberton, Mary AnnReplyDelete
Yay for nursing! So thrilled for you and Clara! It is the best thing and I think she will learn that very quickly! Praying for you all.ReplyDelete
<3 love <3ReplyDelete
Amen and amen! To God be all glory and praise for the miracle of Clara Mae!!!!!ReplyDelete
Chrissy! I am crying tears of joy for you right now. I can't even find the right words to express how happy I am for you. Clara continues to amaze me. That little girl is truly a gift from God and she is here to show us how powerful God and prayer are. Thank you so much for sharing with us. We love you Hardys!ReplyDelete
Chrissy, you have no idea who I am, but I have been following your blog. Our baby Niece Ryann was born with CDH and unfortunately, lost her battle after just 9 days of life. This is so encouraging to read and I honestly feel so close to you and your family. I check in every day to see how sweet Clara is doing. Keep fighting. We are praying for you all!-ReplyDelete
Erin "Auntie" to Angel Ryann Hope Smith
I have been following your blog since I came across a link for it on facebook. I am so happy that Clara is doing so well. I have been following since the beginning. In the beginning, I was so sad and worried for your precious little girl. I can't believe how great she is doing now! It truly does make anyone believe in miracles to see how much she has improved. I look forward to reading your blog everyday and I absolutely love all the adorable pictures. It warms my heart so much. I had tears in my eyes just imagining you getting to feed your baby for the first time.ReplyDelete
I have been following Clara's journey since her arrival. I was able to nurse my CDH baby so don't give up! Clara is doing awesome! Continued prayers...ReplyDelete
Mom to Braden (RCDH born 3/13/08) a
I am so happy to hear that Clara has nursed some on Monday. I guess she'll show them who's boss ! That girl has a mind of her own and some determination, you go Clara ! To GOD be the glory. He is so good, I find that out more and more every day in my own life. Love you Clara !ReplyDelete