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  1. 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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  2. 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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  3. 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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  4. Happy Mother's Day

    I had a fabulous mother's day with my little girl! First, on Saturday, we drove with Dakota and my mom to Sawgrass Mills Mall in Fort Lauderdale (an hour and a half drive) to meet my Nana and Aunt and cousin to celebrate mother's day and do a little shopping. Dakota did perfect in the car and slept the whole way there and back! She, of course, impressed everyone with her cuteness and showed off walking!! I love, love, love, so see her walking around now! It took her a while to gain her confidence, ...
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  5. 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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