May 31, 2011

Eat, Sleep and Grow

Our night with Clara went great.  She ate well every three hours and slept hard in between those feedings (I actually had to wake her up most of the time to eat).  Her daily weight check at about 1:00AM did show a loss of about 60 grams.  Since that was only about 12 hours after starting the exclusive breast feeding the doctors weren't super upset this morning, but we definitely need to see a gain tonight.  Since she's having to work for all of her food now, she's burning more calories than she was with it coming in the feeding tube.  The plan for today is to try to get Clara to eat a lot, sleep when she's not eating and grow, grow, grow.  If she can gain some weight then I think we'll be saying goodbye to that feeding tube for good.  During rounds this morning there were rumblings and speculations of a potential discharge on Friday.  Not too far off from my June 1 goal, huh? 

We weaned  her morphine again today; it is now down to 0.1mg and just one more wean away from being gone for good.  The surgeons looked at her pressure sore wound and her incision today and said they both looked great and we could stop dressing them.  We've moved her echocardiogram, originally scheduled for Thursday, to today so we can get a check on the pulmonary hypertension and check with the cardiologists about whether we can adjust her sedenafil dosing to a more home-friendly schedule.  These are truly the final baby steps to get us out the door.  It doesn't seem that long ago that we were asking you to pray for rapid weight loss.  While on ECMO, Clara had doubled in size and we wanted that fluid gone so desperately.  The nurses told us then that there would come a day when we wanted so badly to see the numbers on the scale go in the opposite direction.  That day is here.  Please pray for weight gain! We'll keep you posted...

8 comments:

  1. My heart just fluttered at the words "potential discharge". I have been silently following sweet Clara's progress since graduating medical school and leaving Brenners weeks ago. It has been the highlight of many of my days to check in and see how well she is doing! She is truly a miracle and I can honestly say that Robert and your amazing spirit throughout this has renewed a faith inside me that has been challenged over the past few years. I feel blessed to have been allowed to learn from Clara and you all. Thank you for allowing me to continue to follow her progress as she proves to be such a ROCKSTAR! Go Clara, GO!

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  2. I am SO excited that you had your first night together...I will pray specifically about the breast feeding without the feeding tube...what an awesome feeling to be close to discharge!!! Love from Elberton, Mary Ann

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  3. Can you imagine needing to actually GAIN weight???? I bet you won't hear her say such in those teen years :-). Years that we now KNOW will be given to you. To GOD goes the glory! Clara WILL eat well, grow well and be all you ever dreamed she would be. Your prayer warriors will help with that, too :-).

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  4. I have goose bumps all over. You are gonna' take your baby home! Love and Prayers always!

    Xoxo
    Nicole Jones

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  5. Chrissy and Robert,

    Hurray for Clara! I am glued to your blogs, and have noticed a distinct shift in the nature of the items you discuss. You have shifted from discussing hosptial-patient things to discussing well-baby things. We fed both our kids exclusively with nursing for a year each, and neither one of them would take a bottle either. They went from breast to sippy-cup. Bet Clara, the proven boob-girl, may do likewise. Our best to you three as you room in. We are hoping to read a report of "The Last Night in the Hospital" very soon. We keep your wonderful family in prayer and thought daily.
    Kelly Belcher

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  6. Awesome!! So proud of Clara!!! Grow baby grow! Praying for you all. -Kelley Waite (friends of Heidi & Katie)

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  7. God is so good!! I have read this blog daily for a while now. I've seen it go from pictures of a beautiful little girl with lots of tubes & wires to a beautiful little girl with only 1 feeding tube & no wires to no pictures because you're too busy holding Clara and being with her to take pictures. What a glorious statement to the power of our God!! While I'm having withdrawal pains from the lack of pictures, I'm so thrilled to hear the talk of going home. I'll miss my daily Clara fix, but I'll know that she's being watched over by 2 of the most caring parents & the most loving God. You are truly 2 parents who exemplify love... love for the life you've helped to create and love for our God who carries us throughout our lives.

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  8. My heart is beating so hard....possibly going home on Friday???? Yea for Clara Mae!!!! God told us to stay faithful and he would demonstrate his goodness and mercy and look at that baby now! Thank you God for the awesome miracle of this sweet little girl! Fingers crossed, prayers said and thoughts abound for a discharge this week!

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