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  1. Ethan

    :D Ethan had a great day. He played a lot and we caught him jumping to get a little picture on the wall this past week. He would hold on to the bed rail, squat down and jump high as he could. He didn't reach the picture but he tried until he got tired. Ethan's endurance is still not what it should be but he is gaining strength all the time and is much better every day.
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  2. going home

    I cannot believe it, were are going home tomorrow day 16!!! we did finally hit a few road bumps, FEEDING, what a pain, he is supposed to take so many cc's by mouth and whatever he doesnt take by mouth goes in his feeding tube. well, he has been tolerating his goal amount but hasnt been taking it all by mouth. Last night I had the nurse do two of his feedings so i could get some sleep and something didnt seem right, she said the 12 feeding he spit up 20 cc's which he never did before and she had ...
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  3. Introducing myself

    Hello everyone! My name is Danielle Mason. I am a mom of a now heavenly angel. Her name is Isabelle May Mason. She was born on Nov. 29, 2007 and died Nov. 29, 2007. She was 2 and 1/2 hours old. She was diagnosed with CDH at 20 weeks. She had no other problems at all. Her heart was on the right side of her chest and had virtually no lungs. Yet she still managed to breath basically on her own for all that time. I also have 3 other children. None of which had CDH. My oldest is 7 his name is Cody. My ...
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  4. partner

    i dint know my baby was going to be born with cdh i had a good pregnancy when he was born bless him his dad said he got hiccups and it was my little boy fighting to breathe we got the midwife she pushed the ememegency button then every one came to bring him back to life! he survived the night then we got to see him before he got moved to leeds hospital(uk)it was a terribble time for us cos we av 3 other children we spent all time at leeds hopeing he would be ok he pulled through his op got off ...
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  5. day 12

    yesterday mekhaai's surgeon said to turn the feeding tube off and up his oral feeds but the nurse wasnt comfortable so we are doing 25 ml every 3 hours and up that every 6 hours by 5ml more and whatever he doesnt take in 10 minutes will go into his tube, but he sucked it all down in 5 minutes and passed out to sleep, mamma's little piggy. I went to the ER last night because my head hurt really bad on one side and my pulse was 48 and I just felt funny, but the doctor said my iron levels were low ...
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