June 1, 2011

Gain, Baby, Gain

Well, unfortunately Clara did not gain the weight we had hoped last night.  She was down another 44 grams.  I must be honest; I'm disappointed and frustrated.  She's been eating really well.  She's resting well in between feeds.  She's spitting up much less.  She seems happier and peaceful and more alert than she ever has before.  She looks great. I really thought she was going to have the weight gain we needed to see.  But she didn't.  And so of course the doctors were not happy.  I understand completely their need to see steady weight gain before discharge, but I also feel confident that if we were just at home, in our own environment (and with time) that she is going to gain weight and be okay.  Alas, we are not at home, so we must deal with what we've got here.

The good news is that we have (perhaps temporarily) removed her NG tube.  It's a huge battle to force Sedanafil (her pulmonary hypertension drug) down her throat four times a day.  But for the first time, Clara is completely free of all tubes.    She had another echo yesterday.  As has been the case the past several echoes, they were unable to measure pulmonary pressures.  However, everything else about the heart looked good.  We're waiting to hear from cardiology about whether the Sedenafil can be adjusted (hopefully reduced!).  We're finished with the morphine as of today as well!  So all that's left is for Clara to eat eat eat and gain gain gain. 

Dr. Yang was not on today, but the attending who is on said she was willing to give her one more day.  She's got another 24 hours to gain weight and prove that she's doing okay.  I feel responsible for this issue.  I know that it's not my fault, but feeding her is my job and it's hard to not take it personally and feel like a failure when she's not gaining.  Dr. Petty (the surgeon) came by this morning and his daily analogy was: "This is problem Z.  You've gotten through problems A-Y.  This is the very last one."  Maybe that's what makes it the hardest.  Yesterday they were talking about a possible discharge at the end of the week.  Today they were talking about putting tubes back in and going back to square one with feeds.  I hope and pray that will not happen.  I don't want to go back to Y or V or U....

Your prayers, and the grace of God, have solved problems A through Y for us.  I'm asking now, selfishly and desperately, for big prayers again.  If you have prayed for Clara through any part of this journey, or you know someone who has, please be on your knees for us this next 24 hours.  Those of you who have emailed this blog to friends or posted it on your Facebook or Twitter, please do so one more time.  Ask that everyone pray that Clara eats heartily and that she will demonstrate her growth objectively with the numbers on the scale that the doctors need to see.  Please pray that Clara will gain weight.  Gain, baby, gain. 

Here is some inspiration.  A face totally free of tubes that we want to stay that way.

And here are a few more shots of her in our new home while we "room in" together. 

Milk coma

Milk coma closeup, complete with milk mouth

bed snuggles

Bed snuggles
 Thank you for your prayers.  We have experienced so many miracles.  We hand this over to God and ask for, wait for and expect another miracle tonight.  May God be glorified.


  1. Praying hard guys! Eat eat eat, gain gain gain, home home home, soon soon soon! Love you!

  2. She is so very adorable! I have praying for you guys on these last steps. I do have one suggestion that was given to me by the neonatologist in the NICU when we were trying to get Dakota to just gain enough weight to get out of there. You can try to pump first, right before breast feeding, just briefly, for about a minute to get rid of the "quencher" (a thinner, less caloric and less fatty) part of the breast milk, that will leave Clara with the more fatty portion. Many prayers for weight gain! I know how you feel at this point - you can almost taste home you want it so badly!
    Mom to Dakota 12-25-2008
    RCDH survivor

  3. I have tears in my eyes as I read your post....what a beautiful, beautiful girl! She has come SO far, and I am praying for this one last hurdle. God has been so faithful every single day, and His faithfulness won't stop here. xoxoxo

  4. Will say some big, big prayers for a big, big gain! You have come so far, don't be discouraged. You WILL get her home, but when it is right for her. She will not be in that hospital forever, just remember that. This will all be a distant memory soon.

  5. I have been praying for Clara's breast feeding...I will pray that the NG tube doesn't have to be reinserted ~ whether you get to go home or not ~ I hope she can continue regular feedings without tubes...I can sense that you are so close but feel so far away...I will be praying for Clara...and you, too! Love, Mary Ann

  6. My first thought is that Clara wants to be a tall skinny model. My second thought is that Mom needs to pig out on a high calorie diet so that Clara gets an extra dose of fattening milk. So go ahead, Chrissy, sacrifice your body for the sake of your daughter! Isn't that what all Moms do? I'm delighted that we are so close to going home and PRAYING for no setbacks. My third child would not ever take a bottle. We went straight to a cup. Of course, the draw back was for 6 months Mom could not leave her too long. Wishing you success and a quick trip home.

  7. Jennifer Tenney gave you a great suggestion! The last of your milk is the richest in calories and fat! Last hurdle.... Clara is going to do it.

  8. From a NNICU nurse in SC, Hind milk is the best! That might be your ticket home!!

  9. Praying, of course, for weight gain. I keep thinking back to my BF'ing days, and what my mom would tell me with my son, whom was fed BM in a bottle while I worked- there is SUCH a difference in BF'ing and bottle feeding. And, the NG tube is more different than that!
    I, too, would continue to gain weight every day if I had an NG tube. How can I not? I am eating, whether I like it or not, right? Now, Clara is eating only when she wants to, as much as she wants, right? Maybe that is enough???

    I have found many medical professionals are not as understanding or knowledgeable about BF'ing. I don't mean this critically...just that their focus isn't on BF'ing, its on the medicine.

    What does the lactation consultant say about the weight loss/gain at this juncture? While she might not want to be in opposition to the medical team, perhaps she would whisper in your ear if she has concerns? Then, as the momma, you could ask/tell the doctor you need more time???? Maybe it Clara was 'artificially' gaining weight, because of the NG, and now, she is going back to her own baseline?

    Just a different thought process for you to consider. :)

  10. like jennifer I know all too well what it's like to be stuck there w/ feeding issues. it's miserable. you know you can make it happen at home. and you will. just know that the more she perfects there the less stress you have at home. the last days were the hardest for me. unfortunately these cdh babies sometimes just don't gain as quickly. we froze pumped foremilk too and then fed the rest. it worked & got us out. eventually. hoping for home right aling with y'all! :o)

  11. Praying with heartfelt longing for Clara to eat & gain and for you, Robert & Chrissy, as well.
    Mary Beck-Henderson(fellow Knollwoodian)

  12. Cmon Baby Clara!!! You have been up against so much and WON.. now just make this last step. We're all pulling for you.. we have been since Day 1 and we won't stop now!

  13. I am thinking the same thing with pumping some of the foremilk first (60-90 cc) so when she nurses she is getting the hindmilk rich in cream. Hang in there Chrissie, you all are doing well, the last few days seem like the longest time. Post ECMO babies are slower in perfecting their eating, but it will come.

  14. I am 100% confident that Clara will gain weight tomorrow!!!! Go Clara!!!!

  15. Praise God who has taken you through A -Y! Z will come!!! Praying for weight gain!

  16. Prayed for amazing Clara to gain weight. Also, prayed for mom and dad to feel peace and have renewed strength. God is so good. Keep trusting in in God's timing and remain faithful.

  17. Prayers sent!!! Our God is in the miracle business and I just know He is going to sent your family (Clara) another miracle! Your praying Friend! Gain, Gain, Gain........... My prayer!


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