Search results

  1. N

    Any experience from parents with babies with severe HIE?

    @snarf @thechongfam on Instagram has a little boy with HIE. I think many of their followers also have kids with HIE, so you might find some folks who’ve had similar experiences as you! For a while, we were in the Stem Cells for HIE Facebook group, as we were seeking stem cell therapy for my...
  2. N

    Husband forgetting to turn oxygen on

    @jtmorris Ah, that makes sense! Can you set up some alert system? Idk, like a vibrate on your apple watch every 10 mins or something to double check that she’s hooked up?
  3. N

    Husband forgetting to turn oxygen on

    @jtmorris Is your husband a hands-on parent in other ways? Does he have ADHD or any other condition that impedes his ability to remember details/juggle complex tasks? Does he recognize the severity of his forgetfulness or is he brushing it off? Is he secretly trying to trial her off it?
  4. N

    Are there any positive long term outcome stories from babies on ECMO?

    @shamila Aww she’s a little peanut! Sorry that you’re in the throes of NICU life. My daughter is now 3. She had HLHS (though it was downgraded after her first surgery) and coarctation of the aorta. She required two open heart surgeries but is now heart healthy. Best of luck to your mini!
  5. N

    Are there any positive long term outcome stories from babies on ECMO?

    @shamila Which CHD? How is your little one doing?
  6. N

    Are there any positive long term outcome stories from babies on ECMO?

    @smta I know a lot of kids with congenital heart defects who were on ECMO for a time and successfully came off! (My daughter had CHD, a stroke at birth, and extended intubation, though no ECMO.) I’m sorry you’ve had such a stressful week. Please keep us posted on how little one progresses ❤️
  7. N

    Anticipating 6-8 week NICU stay in August with a 2 y/o at home - advice or information?

    @baohomotorprovn250932 Hello! My CHD baby was my first, so I cannot give you insight into managing with older kids. She was in the hospital for 5 weeks for her first surgery and 3 for her second. We lived 45 mins away. We stayed in a hotel for the first two weeks after birth, which was...
  8. N

    Antibiotics given for RDS and I’m mad about it

    @kingskid001 Hey, I peeked at your post history, and it sounds like you’ve had a rough go of it during pregnancy. That, coupled with the trauma of your daughter’s PICU stay, might have you reeling with a sense of not being in control. I don’t have any good advice for you, other than to say that...
Back
Top