You know how in the Bible "40" is always used to just kind of mean "a really long time"? Well, I'm here to tell you - forty days is a really long time. Today was Clara's fortieth day of life and when I try to think back six weeks ago to where we began, it's already becoming a big of a foggy haze. It already seems like a lifetime ago. Clara has come so far and done so much in forty days. She's been to the brink of death and back again. She has fought hard for her life and overcome obstacles that no one thought she would overcome. She has revealed to us her beautiful spirit and changed our hearts and lives forever. She's helped God change the hearts and lives of lots of other people, too. It's amazing to me still how God has chosen to use the story of this sweet precious baby to reignite flames in so many souls. All in forty days and forty nights.
Clara has come a long way. She is so much healthier now than we would have even let ourselves imagine a few weeks ago. She looks great. She's tolerating being held and moved and having her diaper changed. She's breathing on her own. She has beaten ECMO, infection, chylothorax, kidney issues, adrenal insufficiency, hypotension, and is giving a great fight against pulmonary hypertension. What a champion. We see her now on the road to recovery. We know that road will still be long. We still have battles to fight and there will likely be new obstacles that arise along the way. But when we look back at what she's done in forty days, we know that she will continue to surprise, amaze and inspire us all with the days ahead.
Today Clara had some goooooood snuggle time. I held her for an hour or so this morning and another long stretch this afternoon. Her Big Daddy got another chance to hold her today and her Sweet Mama held her for the first time too. Other fun accomplishments in Clara's busy day: she wore clothes for the first time (!) now that her umbilical artery line is out, she weaned her oxygen levels down to 65%, she got her first chance to be introduced to the good ole boobie (we didn't make much progress, but it was really just a test drive.... we'll work with the lactation consultant some tomorrow), we began re-mixing breast milk in to her formula drip, she tolerated another wean of her sedative medication, her echocardiogram showed unchanged pulmonary hypertension which is fabulous considering we've dropped two big PPHN medications since her last echo, she had her first physical therapy and occupational therapy sessions and her mommy got a lesson in how to continue working on her PT and OT skills. What a Monday!
Concerns and future goals for Clara (and therefore things for you to continue specifically praying for) at this point are: Continuing to wean her oxygen down. Like I said yesterday, room air is 21%, so we'd like to get her there, slowly. Fluid, fluid, fluid. Her time on the ventilator was rough on her lungs and her chest x-ray today was even wetter than yesterday's and the scale reflected it too... she was up to 10 pounds, 14 ounces. We really need her to shed another kilo (2 pounds or so) of fluid, specifically from her lungs so that they can open up and do their job without having to work so hard. Feeding is our next big obstacle. Since she's had tubes down her mouth and throat for the last six weeks, she doesn't have very positive associations with things going in her mouth right now. She's also never had to learn how to swallow and her sucking reflexes aren't what they were when she was first born. So we've got to re-learn all of that and possibly overcome some acid reflux/aspiration issues, too. That's a lot to learn when you've just learned how to breathe! We will also need to wean her morphine and versed. She's a morphine addict now and sometimes these babies really struggle with withdrawal. Pray that she will be able to come off the drug easily and adjust to life without it soon. We also ask for you to continue praying for protection from secondary infections or other complications that would cause a big setback in her overall progress.
Isn't it great that our concerns and prayers now are for things that directly related to bringing her home? It is so refreshing to not be on the brink of life and death any more. We know that we will tackle whatever is ahead of us now. Especially with the love and continued prayers of so many....
Speaking of prayers - thanks to the many of you who have been praying for the other baby with a diaphragmatic hernia. I don't have much more information today because I still haven't met the family yet. I did write them a note and drop it by today with my contact info, so they know that we are here for them whenever and if they're ready. The baby's name is Penelope (beautiful!) and she is successfully on the ECMO pump now. Please continue to remember her in your prayers. I really hope they'll have the happy outcome we have.
I'm realizing looking at these photos that you can see her pressure sore on the back of her head/neck in a lot of them. I haven't really photographed it yet, because ewww, yucky. But don't be alarmed; even though it's big and kind of gross, it's actually healing really well. I might be a little out of control with the photos, now that we've got her out of the bed. But how can you resist these snuggly shots?
Praise be to God for the good works He has done!
So beautiful! Prayers for Clara and Penelope too!ReplyDelete
I am thrilled for ya'll and praising the Lord! Love seeing you guys hold Clara and her in her pretty outfit!! Beautiful girl!! Will keep praying for the requests. Love ya'll!!ReplyDelete
Beautiful pictures and words tonight. Want to know something REALLY bizarre? Remember my niece Clara? Her older sister (and our family's miracle baby, oddly enough) is named Penelope!!! She goes by Penny now, but that will be REALLY easy for me to remember! :) Praying for Clara, and Penelope too!ReplyDelete
hi :) you don't know me, but i linked to your blog from another... your sweet Clara is about a month younger than my daughter...and i just felt so pulled to follow you and Clara...ReplyDelete
when i'm rocking my older daughter each night, i always pray for sweet Clara and for healing and blessings....and for your strength... so each night (or in this case, each early morning :)), i check "the hardy life" to see how your sweet one is doing... i love your posts... and let me say there will NEVER be too many pictures of Clara... :) she's a special little lady :)
good luck with the nursing... i'm a nursing momma, too... keep on keeping on... :) it's so worth the time, frustration, pain, etc. :) just try not to get discouraged... :)
many blessings to you!! :) thanks for posting :)
Such a perfect family. It is written all over you and Robert. I'm so, so thankful for the progress of the last 40 days and nites and will continue to pray for continued improvement. You'll be taking her home before you know it. Much love and many prayers for all of you.ReplyDelete
She is absolutely beautiful. God is doing amazing things. Even when we don't write, we read daily. Sometimes log on just to sneak a peak at her beauty!ReplyDelete
Thank God you guys will be available for Penelope's family. Divine intervention is a beautiful thing.
Congratulations and prayers continue for you all. Thank you for shariing your lives with us.
Nicole, Presley, Peyton & Patterson Jones
So GREAT to see these pictures. So clad Clara can be held. That is so important to you all.ReplyDelete
Annette and Randy
I work with your Dad (Bob) in Athens. I've been following Clara's progress along with others folks at work. She is so beautiful and I'm so pleased with how well she's doing, and how well you are ALL doing as a family. Stay strong and be patient. I know very soon she'll be able to go home.ReplyDelete
Bet those new clothes feel so-ooooooo good. You know how we girls LOVE to be all "dolled up" and what a DOLL Miss Clara is ..... even if just in bows :-)! I am sure we will see her FASHION PARADE as the days go by .... can't wait! Prayers of healing continue for her and her soul sister, Penelope. Prayers of thanksgiving are being sent for sweet parents and grandparents!ReplyDelete
This is just great news! Your story gives my wife and I such hope for the same outcome. Day 40 is so far away for us - we are only in week 25 of our CDH pregnancy. But with Clara's inspirational journey and a lot of Faith and Prayers we hope our story has a happy ending too! My wife and I wait for your post every day to see how Clara is doing and we pray for her and our little Owen every night. We will add Penelope to our prayers... Thank you for giving us hope.ReplyDelete