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  1. Great Day

    :) Ethan had a very good day. He is playing in his crib right now. Earlier he was crawling all over the place. He loves his busy ball popper and knows how to put the balls back in when they pop out. He pulled up using it for a crutch, then let go and stood by himself for a few minutes. It was very exciting. We are looking forward to him standing up without support and walking. He doesn't have to go to PT Monday due to the holiday. We are going to enjoy our 3 day weekend. I haven't taken ...
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  2. Ethan

    :) Overall I would say I am happy. I am so thankful for my beautiful family and am listening to them as I compose this message. I didn't get my first post up so here is a summary of Ethan's story. He was born at 31 weeks with a right sided cdh. He was on the vent for 6 weeks, then extubated to the high flow cannula, then the regular cannula. He came home at 90 days old. At 13 months in Dec. 2009, Ethan had a 2nd repair and stayed on the vent 3 weeks. He was extubated to his regular cannula ...
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  3. Due 9/1/10 with a baby girl whom has CDH

    My name is Jenna Jones, I am pregnant with my third child in which we are naming Savannah Grace. She is expected to arrive around Sep. 1, 2010. It's scary to hear your baby has a birth defect and even scary that so much is unknown about CDH until she is born. Either way I love her already and can't wait to fight this battle with her.
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  4. HELP

    On March 12, 2010, my granddaughter Emily Rae was taken from us. She was not even 24 hours old. We were told after the autopsy that she had CDH on the right side that made her lungs really tiny. Her liver had moved up through the hernia and her bowel had started to. With her liver moved up, her heart was pushed over to the left side. My daughter's 20 week ultrasound did not show any problems at all. I never knew any of this existed and would like to talk to other moms that have had their babies ...
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  5. home

    My life is almost back to normal, I love my son, he is so sweet and he is a very easy baby considering the tough road we took to get to this point. I feel stronger and more relaxed than ever before, things that used to matter or upset me before slide right off my back now. Mekhaai is 2 months old now and still on a little oxygen, he has a little pulmonary hypertension that I am hoping will be gone at his next visit. He eats with not problems (knock on wood) he is trying to roll over and he talks ...
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