April 27, 2011

Little Miss Fussy-Pants

Clara had a fairly good day medically.  She got her IJ triple lumin line taken out of her neck and it looks so much better.  She did not particularly care for the ordeal, her blood pressure and heart rate went nuts and she was crying the whole time.  But you know what?  If you pulled sticky, scabby tape out of my hair and then tugged on some crusty stitches, I don't think I'd like it either.  We also took off her milrinone so that's one more PPHN drug that's gone.  It's got a long half-life (which means it lingers in your system for awhile), so she's having another echocardiogram on Monday to see how she's doing once we're sure it's gone.  We also changed her ET tube from being taped to a neobar to give her face a chance to breathe after having icky sticky tape on it for so long.  Unfortunately, I'm not really sure she's wild about it... the placement is a little different and this afternoon she was gagging a lot.  My suspicion is that it's the tube.  We also began weaning her sedation med today.  I have a feeling that's going to take a long time...  We resumed feeds today (with Enfaport formula) and are hoping that the chylo won't return so we can quickly increase those and get back on the feeding track.  She did spit up some this evening, but I think it's because she was gagging on the tube, not because of the formula.  So I really really hope we won't discontinue feeds or change anything about that plan.  We're back down to her vent settings from before the broviac procedure yesterday.  Still need to go down a bit on the oxygen and maybe the rate and pressures a little bit too. 

She was alert and awake and happy a little bit today, but mostly when she was awake she was a big fussy-pants.  I'm not really sure what her issue was.  Some theories: itchy from the morphine (we gave some benedryl this afternoon), more awake and aware of her ventilator which she is really ready to be done with, hungry since we stopped feeds for a couple of days (I swear I heard her stomach growl this morning - we Hardys do not like to be deprived of our food), hot at one point (?), a dirty diaper (she's really a princess when it comes to a dirty butt), tired from being awake a lot last night, or just plain baby fussy.  I know it's normal for babies to cry and fuss and be unhappy.  I don't mind her acting like a normal baby, but it's really difficult to watch the silent cry, not be able to hold her, and worry that she might be in pain or that her fussing could lead to desating.  For the most part today she didn't desat when she was crying - there was only one episode of that this afternoon and that was when we knocked her out with some benedryl and extra versed and she recovered quickly.  As of this evening, she is sleeping peacefully and sating high. 

We're keeping on keeping on.  (That sounds normal when you say it, but looks weird when you write it.)  Smaller baby steps the past couple of days, but we're still taking care of things that need to happen for her to get better.  I'm growing a little eager to extubate, but certainly want for her to be ready before we do it, so once again I'm trying to work on this whole being patient thing. 

Oh!   There's this.  I "held" her today.  Okay, it wasn't a real hold.  But I lifted her from her bed ('light as a feather, stiff as a board' style) for the nurse to change her blanket from underneath her after she spit up.  It was just a few seconds, but at least I had her in my hands...

Here are some photos of Clara at five weeks:

Today's hairbow is brought to you by the letter U for Umbrellas.  April Showers bring May Flowers, right?
Clara's first real tear.  That's from pulling the IJ line out.

Baby with tear.  So sad.

A brief happy moment, hanging with her jungle friends

"BLEGH!  I hate this tube!  Get it OUT!"

See that hand wrapped around her tube?  She really wants to pull it out.  Smart kid.

This is the sad face we saw most of the day today.  Actually this one isn't even as bad as it was.  But I told her, "Hey, it's okay.  Sometimes a girl's just gotta cry."
 Today on "Parts of Clara I think are beautiful":

dainty long eyelashes

And sweet little lips and tongue. 
Prayers for Clara:
A happier day tomorrow, filled with more steps forward like continued weaning of sedation, increased and tolerated feeds, no return of chylothorax, no more gagging on that tube, reduced ventilator settings and general tolerance of all of the above!  Continue to pray for her pulmonary hypertension which is her biggest medical concern at this point and we have taken away her big PPHN medications (flolan, milrinone and nitric oxide).  Pray for her team of caregivers including nurses, doctors, nurse practitioners, residents, fellows and physicians.  Pray for her tired mommy and daddy who continue to try to pace themselves for this marathon when sprinting is maybe more my style (metaphorically speaking.  I, of course, do not actually run sprints or marathons!)

Today Sumi, one of our favorite respiratory therapists from the ECMO days and also one who continues to care for her in the NICU came by to check on Clara.  Mom asked her if, a couple of weeks ago, she thought that we were ever going to make it to where we are now or if she thought we were going to lose Clara.  Sumi answered by saying, "I had faith that she would get here.  I think it was the prayers that really helped."  It was her way of saying, "Medically, no.  But because of love and hope and many prayers, yes."  We continue to stand in awe of this miracle.  Thanks for being the team of prayer warriors who have faith that we'll bring her home too.  Your continued prayers will make that a reality someday, too. 

For where two or three gather in my name, there am I with them.”  Matthew 18:20

Thanks for gathering with us and inviting God into this sacred shared space. 


  1. The picture with the tear drop in Clara's eye is so beautiful. Sorry she had to have a fussy day. I bet she doesn't like the tube. It looks uncomfortable. Praying for a better tomorrow.

  2. Oh, Chrissy, we love that baby so much. We all love you too. And let me tell you, she did not cry alone. I am NOT a crier, but this sweet baby, well, she gets the tears a rollin. That sweet little tear....oh my. We are so proud of Clara, and of you, and of your adorable husband and precious family. Praying non-stop.

    Love, Rebecca, Kermit and the boys.

  3. So happy things are moving in the right direction! Sumi is a GREAT RT!! Such a kind and gentle person. Keeping prayers going!!

  4. Clara tears break my heart. Tomorrow will be a better day, sweet girl. You are so strong, and we love you so much. I want to go buy you a pony and 5 American Girl dolls RIGHT NOW.
    I'm off to pray.
    Much Love,
    Katie Davis

  5. What encouraging news for Clara today! She is working so hard. Chrissy you are so right ....she wants that tube out..gone ...now! Praying you will get your birthday wish! Rest, rest and rest some more guys......the marathon is still in progress but the finish line is in sight! Thank you God for your perfect work in Clara's little body

  6. She is beautiful in every way!! I remain steadfast in prayer for Clara's healing. God be praised for His many gifts to Clara every day since her birth....each day gets her one step closer to being home with you and Robert. Praying and loving you from the sidelines!!!

  7. Okay, the little baby tear made me cry a big ole grown-up tear. Not the first time this baby has made me cry either!

    We're still praying prayers for healing and enormous prayers of thanksgiving for progress this far.

    Happy Birthday, Chrissy -- three days early.

    Much love,

    Laura and Frank

  8. Hi Chrissy and Robert,
    Thank you for posting Clara's progress. I am so sorry that she was unhappy today and pray tomorrow will be easier for her and you two. I am also axious for her to get the et tube out. She will then get to have less sedation, hear her voice and be happier. I hope that day will come very soon. Take care and get some rest. Sandra Curtis

  9. Clara is so precious; bless her heart, as that tear goes down the side of her face. I go to bed with Clara on my mind, and I wake up with Clara on my mind. We will continue to think of and pray for her. God has been hearing my prayers ~ particularly Saturday before last and last Thursday. LOVE from Elberton, Mary Ann & Chuck

  10. Seeing that first real tear is heartbreaking for mamas and daddies (and for Clara Mae fans, sniff)! Prayers for a more comfy, settled baby tomorrow with proper tube adjustments and continued slow & steady progress toward extubation and decreased PPHN. I am thrilled that you got to lift that sweet baby today - even for just a few seconds:) I'll bet daddy is a little jealous...

    God speed, Clara Mae.

    -Mundy Price (friend of Rebecca Smith)

    (BTW, speaking from experience here... when it comes time to potty train little miss Clara, you'll be glad she isn't fond of having a dirty bottom:)

  11. Hoping & praying tomorrow is easier on all of you. I love the eyelash picture. I remember one day looking down at Rebekah and thinking-- where did these come from? One day she just had eyelashes! The tear picture breaks my heart... oh Miss Clara you are going to be held and snuggled by your Mommy very soon... hang on sweetie! We love you and are praying hard for your sweet little fussy pants! :)

  12. I am a dedicated "Clara Prayer Warrior " - the girl has a piece of my heart! Clara is such a fighter! I will continue to pray for Miss Clara - she has taught me so much about life!

    Love & Prayers From Cincinnati, Ohio

  13. Please know that you all and Clara are affecting lives you don't even know about, touching souls beyond your wildest imagination. Her struggle and TRIUMPH are inspiring people and bringing them closer to God. Every night I come home and eagerly hit "refresh" on my browser, so I can read about Clara's latest achievements. Know that your diligence with this blog is a gift to more people than you could ever dream of.
    In love,
    A friend

  14. I pray for Clara and you, every moment I have. My family prays for you every evening. Pleas know that we are keeping a vigilant prayer for all of you. We await the day when you can truly hold her.
    Much love,

    Tammy Van Duyn

  15. I love the close up of her pretty blue eye...even with the tear!
    She's BLONDE! She has blonde eyebrows! So beautiful. I am praying today for more comfort for Clara....I'm sorry about that yucky old tube sweet girl.

  16. So glad you at least got a chance to pick her up even if it was just a little time. I can't wait to see pictures of Momma holding Clara. It will be such a BIG moment. We are still praying.
    Annette and Randy

  17. Still praying for you guys and beautiful, sweet Clara!!! Loved her pictures! Love ya'll! Can't wait for her to have all those tubes gone!

  18. Tears cleanse the soul and she will have many more. Just wait for those TEEN-AGE years :-)! I know a moment of holding her was heavenly. Soon you can do that as often as you like .... did I hear "FOREVER"????? You and Robert have so-ooooo many beautiful moments ahead with your little princess .... I can't wait for the family life moments to begin for you. Hold on ... they ARE coming and oh, what a ride!

  19. I cry every time I read your blog, but especially through this post. Praying for sweet Baby Clara today, for her to be comfortable today, and for Mom & Dad too, who stand by and watch.

  20. Open the door and let Him in......Just thinking how very blessed we are to live in a free country where we can openly worship God and be prayer warriors for one another in an open forum such as this. It seems Clara's life has depended on it!
    Still praying for your beautiful little girl!


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