May 3, 2011

Every Day Gets Better

Every day with Clara just gets better; she keeps getting stronger and healthier and more and more fun.  I had such a great time with her today.  The sedative wean is going well - she's tolerating it and was awake and alert so much more.  Today for the first time, she really felt like a typical six week old baby and not a critically sick one.  She's doing so many of the things that a healthy baby would be doing now: responding to my voice, tracking with her eyes, and SMILING!  Yes, today there were several smiles that I really believe were real smiles, not just gas or coincidence.  It was so wonderful to see her awake more and begin to feel like I could even get a sense of her personality.  I think she's a really happy baby.  Except for when I was pumping, at rounds, or having a lunch break, I had Clara in my arms all day.  It was many hours of snuggling, singing, talking, playing with finger puppets, and a few naps (for Clara - not mama!), too.  I gave her a good lotion rub down and she seemed to really enjoy the massage (I hope it will help some fluid get movin' too!).  We did her OT oral exercises several times throughout the day (I might be an overachiever) and she did great with them.  She tolerated being held great and we didn't have to turn up her oxygen for desating any.  Granted, it was set at 80% most of the day, so it's still pretty high, but I think it's worth it if it helps her spend time out of bed and moving and interacting.   All of her medications are being given in oral form now so her peripheral line was taken out of her foot and her broviac was hep-locked.  They moved her OG tube from her mouth to a NG tube going into her nose (that's her feeding tube), so now her mouth is completely free.  The lactation consultant came by and we gave our first little lesson in breast feeding.  Clara did well, all things considered.  We've got a long way to go, but I'm determined to be persistent and not get discouraged.  She didn't latch on today, but she got to taste some breast milk and "play" a little.  The LC said that she's not hungry since she's on continuous feeds and that you can't get a baby to eat if she isn't hungry (that's not a problem for me!).  So, tomorrow we'll turn off her feeds for just a little while before we try to breast feed and see if that makes her any more interested.  She was on 50% breast milk and 50% formula in her feeds today and tomorrow we'll go to 75% breast milk.  

Probably our biggest immediate concern for Clara at this point is her pulmonary edema (swelling, fluid).  She was up to 5.15kg (11 pounds, 5 ounces) today and we're estimating her dry weight at somewhere around 4.5kg (9 pounds, 14 ounces).  So she's got about a pound and a half to lose.  There's no magic cure for this, just patience and time along with the max dose of Lasix that she's already on.  She does also have a tendency to be tachypnic which just means her breathing rate is sometimes very fast.  That is probably related to her wet lungs and we're hoping it will resolve itself with time.  Today I discovered that she loves having her back scratched and if she is tachypnic, her respiratory rate would almost always drop back down if I started scratching and rubbing her back.  I love getting to know her and her little tricks and idiosyncrasies. As the fluid leaves her lungs and she recovers from all the trauma her body has been through we should be able to wean her oxygen levels and flow.  In the meantime, we'll keep working on OT and PT, give her lots of time out of bed, continue trying to introduce the breast, and keep weaning her sedatives as she can tolerate it.  Patience is not my strength, but if we have more days like today while we're "waiting," I'll be happy.  She was so much fun!  

Here are just a few photos from today.  It's harder to get pictures of her when I'm holding her all day long. :)  But I want for you to see how good she's looking, too.  Actually I think there was a pretty significant difference in how she looked from the beginning of the day to the end.  I think some of her swelling went down just during the 10 hours I was there. 

First thing this morning - hanging out on the Boppy.  She still has her OG in her mouth and you can see how her right eye is swollen a bit.  That was gone by the end of the day.  (She's also still in yesterday's outfit.)
Check out my double chin

Playing with a monkey finger puppet

Wardrobe change!  Duckies today... (thanks, Auntie Sarah!  It's a newborn size, but we still squeezed in it!)  Clara was very thankful that I forgot the matching hat.  She apparently hates hats.

She really is so cuddly.

A girl's gotta color coordinate

For all you bow fans out there, I have some sad news.  These are near to impossible to keep on when she's in and out of the bed.  But, as cute as they are, I'd rather her be active and moving than keep a bow in!  So, you may start to see less and less of them.....

Baby feet

Feet and fanny

Daddy snuggles to end the day (notice the tube gone from her mouth now!)

She is looking so good!
Thanks so much for your continued prayers for Clara.  The obstacles may be smaller and the battles less critical, but we still have a long road home, so keep praying for our sweet little baby.  We are grateful to share her life (and our lives!) with you.

I can't wait to see what blessings tomorrow will bring. 


  1. What an amazingly beautiful little girl! I am so glad that God has given us all (mostly you her family) the ability to see Clara without all the tubes. She looks so incredibly happy. :) Continued prayers for amazing success.


  2. How wonderful for you to have a day like today at long last!! She looks just great, and I am so thrilled at how well she is doing!!

  3. I have been praying that Clara would not have a secondary infection for quite some time now...I will pray specifically for her wet lungs...May each day bring new improvements ~ slow and steady wins the race! LOVE ~ Mary Ann

  4. Chrissy,

    This is one of the best parts of my day. I just love the blog, but no where near as much as I love that baby. Wow. She's amazing. She's so beautiful, and she is just well, a miracle. I still haven't sent her little surprise, but I'll get it there. Give her a special kiss from her praying buddy, Bec Bec and let her know that oodles and oodles of people are praying for her and loving her from a distance. Sleep well tonight and get back to more cuddles tomorrow. SO happy for you, so happy for all of us.

  5. Love, love, love all the photos; you can never have too many. Celebrate every moment with your precious baby! You all are in my prayers every night.

  6. As I turn in this evening I say a prayer of thanksgiving for the most encouraging day; for Clara and you and Robert as parents. What a blessed day and many more to come! Clara is simply beautiful!!
    Again, praise God from whom ALL blessings flow!

  7. Love the photos! She is GORGEOUS! Praise the Lord for all He has done and all He is still going to do! Love you all, and praying still.
    Mary Catharine

  8. Chrissy and Robert, I have been following Clara's progress daily. This is her best day yet. It seemed the swelling in her eye went away. I sure hope her lungs will be drier tomorrow. Will continue to pray for her and all the babies around her.

  9. Cuddly babies are the best!!! And praise God that you are getting to snuggle with that sweet little girl - y'all have to make up for lost time - 37 days of lost time! Prayers for progress with the nursing, less wet lungs and more regulated breathing. She is just amazing us all by how far she has come, and surely she'll continue to impress!
    (And Chrissy, kudos to you for remaining so diligent with the pumping throughout all this. It requires a lot of dedication - you're giving her a great gift!)
    Good night,
    -Mundy Price

  10. Ok, so NOW can I come see this wonder baby!?!?! I cannot WAIT to get my hands on her!!! So beautiful!!! We are so happy things are improving so quickly! Much love to the three of you!

  11. also? I'll give up the bow pictures if you promise to replace them with Feet and Fanny pictures... LOVE!

  12. You guys are amazing. I love the straight on pictures. She is beautiful! And what kissable lips. I do wonder how many kisses you give that sweet little mouth in a day. I pray all the snuggling, massaging, rubbing and movement will get that fluid moving. She has made incredible progress; you all have. Yayyyy God!!

    Praying for positive breast-feeding strides. Thank God for an NG vs. OG tube. A free mouth, now she will learn to suck. And glad she might actually be "hungry" tomorrow!

    What a beautiful MOTHER's DAY gift, early!! Love, hugs and prayers to you all.

    Nicole Jones

  13. What a precious little one! So thankful for her continued progress and we will continue to pray for more! Our middle one, Eliza, loved to have back rubs, too. And still today, she will come sit beside me and ask me to rub her arms or back (she's 10!) ~ special moments.

    Thanks so much for keeping us updated with ways we can pray specifically and allowing us to walk this road with you.
    Much love,
    Amy (McAvoy) Diamondidis

  14. She is looking great! She looks much less swollen. What wonderful news. She truly is a miracle, fighter and gift from God. She is one tough cookie!

    Big step going to the NG tube! Now she can really work on feeding & sucking.

    Thank you so much for allowing so many to follow this inspirational story. Y'all are one heck of a strong family and Clara is a true miracle. It's evident the Lord has a plan very specific plan for her. God is good.

    We lift you all up in prayer,
    The Preston Family

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  16. Chrissy,

    Yay! We are so happy to hear about all the good news with Clara! She is so strong and no doubt the hand of the Lord is touching her little body day after day!
    I wanted to write and encourage you today...we are praying for Clara's next steps, especially being able to breast feed! I know the joy and love I feel being able to nurse at my breast, but it wasn't always that way. Though she was not in the NICU, when Maggie was in her first days and weeks of life, they threatened to hospitalize her for failure to thrive because she was losing weight and not gaining. We put her on formula to avoid hospitalization(I tried pumping, but since I was a new mom who didn't know any better, I didn't try to pump until I had already lost my supply due to her not latching on). She went six weeks without latching on. I tried to breastfeed at every feeding, but found out that she wasn't really hungry because of the formula she was getting, that she had no interest in latching on, just like your LC told you!! I did not want to give up my dream of breastfeeding her, so we decided to take away one bottle, so she would go six hours between feedings(she was eating every three hours). I did clear this with the doctor first, they thought I was crazy, but said it would be okay. Jeremy and I prayed continuously throughout that six hour period as we had many times in those six weeks. At five hours and fifty five minutes she latched on and began sucking like she had known how to do it all along! The Lord touched her and me and she breastfed for months after that. Many people told me after that, that you cannot take a bottlefed baby and get them back on the breast, but with our God, oh yes you can!! Praise Him! It was such a special time for me and her. I am praying for you and Clara specifically today! You have an awesome attitude about this...if you do find yourself getting discouraged that many moms have been right where you are! It is all worth it in the end! I will be lifting you and Clara up to the Lord today and asking Him to let Clara latch on and nurse like a champ! I'm praying for you, that you won't have any soreness and that things will run 100% smoothly between the two of you! You are in my thoughts and prayers! Can't wait to hear all about it. Thanks for the blog! We love lifting all three of you up in prayer daily!!
    Praying for His peace and grace,
    Karen Ponds

  17. WOW! Miss Clara just gets more beautiful with each new day. Look out world ... a Miss America of 2029! Will miss the bows but will enjoy just looking at her. I can ALMOST smell that sweet baby scent ....ummmmmmm, nothing finer. Hug her a little longer for all of us who wish we could :-) and enjoy the days as they do get BETTER and BETTER and BETTER!!!!!!!

  18. Let the good times roll and the snugglin' and huggin' begin! So encouraging to see you actually looking like a "normal" family. Still praying that God continues to work out what needs repairing in Clara's lungs. God is so good and little Clara reminds me that he is so good ALL THE TIME!

  19. i love reading everyday all the progress that clara is making. thank you so much for sharing this journey with all of us. we will keep praying for her and that she may go home soon. she is a blessing.

  20. What a sweet little angel that you have in Clara. I have sent prayers up for her and will continue to do so!!! May God continue to heal this beautiful baby of yours and may he continue to bless you and your family with his mercy, compassion, strength, grace, and most importantly his endless love!!!


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