Blog Comments

I've been 4ft 10-11 inch tall for 10 years since my rod placement. And maintaining my weight in the 100-103 range. From my short height and PH ( can't be below 95 pounds or above 105 pounds.) Working on more high iron foods to keep oxygen in blood stream, for a year now since I got off iron pill and water pill, maintaining both for a year by my self.

I was born with Severe Left CDH by age 8 was first diagnosed with PH but learned I grew up with it. I'll be 23 tomorrow. My PH right now is stable. My last CDH diaphragm repair was 9 years ago, had rod placement in 2006 then in 2007 hole opened up and intestines got lodged. I was 12-13 then had to learn to eat age 13 1/2-14 years old. I was only on ECMO for a week when I was born.

I wish you and your daughter the best. My son Joshua just turned 19 and has quite a few issues. He wasn't on ECMO but has had lots of challenges. He really inspires me with his perseverance.
You are a marathon Mom to go through this with your daughter.