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  1. Some of the best days of my life

    I was reading a blog the other day of a CDH angel. It was heart breaking, but the mom said something so beautiful ... she said that before the baby was born, she prayed that if the baby was going to die, to take her quickly. But the baby lived for 37 days and the mom was thanking God for not granting her prayer. She said the days where her baby was in the hospital were some of the best days of her life. It really made me think. The days in the hospital were definitely some of the hardest days ...
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  2. Please Eat More Baby

    My little girl is just the sweetest baby ever ... she has an adorable disposition and has been really healthy *knock on wood* but Man, I wish she would eat more. For the first time I weighed her and she went down in weight. She is often the same and only goes up very, very slowly, but this time she lost=(! We have never been on the growth curve, not even close, and not even for her adjusted age. However, we have also never had a tube since we were discharged. I want to keep it that way and ...
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  3. almost time

    :? its almost time to have little Mekhaai, any day now, we will be starting our battle with the CDH monster. I am excited to meet my little man and get this first battle over and then on to home with him so we can start the next battle, toddlerhood and then teenage years. March is a good month and full of new beginnings. Thanks again to all of the support that I have gotten from this site, you all have really helped me through this journey. I can't wait to log back on after Mekhaai has come ...
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  4. Anniversary of Coming Home

    Today is the anniversary of bringing my baby home from the hospital. As you all know, in some ways, this is the anniversary of the day when I really became a parent, because up till February 25th, Dakota really was cared for by a whole team of doctors and nurses, but on February 25th, for the first time, she was solely our responsibility and ours to protect and love. The weekend before, I had roomed in the hospital for 48 hours and had done every feed of Dakota's. She had not quite taken the ...
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  5. A non-anniversary

    So yesterday, February 14th, was not exactly an anniversary, but I remember the day very well. First of all, it was Dakota's original due date. Parents in NICU of premies are often told that the goal is for the baby to be released by their original due date. Of course, with CDH, all bets are off, but back around January 31st it looked doable. After all the drama of ECMO, the surgery, getting extubated, getting through an infection and C-PAP, Dakota was on nasal cannulas by the last week of January ...
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