Fetalis Hydrops (wonder)

(the first pictures we ever saw of Bella – she’s about two months old)

I’ve been thinking.  Why didn’t I realize how ill Bella was?  I mean I knew she was ill (see here), but why didn’t I have any idea how hard her battle would be.   I had communication with her mother for almost her entire NICU stay.  Well, maybe I didn’t want to believe she was.  Maybe.  Maybe I saw that beautiful face and fell hopelessly in love.  She was a baby in a NICU.  But when I look back over the emails, I see how she was improving.  Just like my other five little girls had done – they all had NICU stays and they all turned out just fine.  She had the heart problem, but we had been told multiple times that once she was repaired, she’d be fine.  Really, though, I don’t think anyone knew how badly effected her lungs were until after her heart was repaired.  As evidence, my email to Bella’s mother after getting back to Texas:

We went to the doctor this morning. He is calling the cardiologist for us to set up her first appointment at Texas Children’s. He says that once she has her surgery, she should be a pretty normal little girl. That was wonderful to hear. The girls are all loving on Arabella and having a wonderful time.

Of course, I knew that she was born with fetalis hydrops.  Her mother had told me, but I didn’t understand it.  All I knew was that sweet little girl, who I thought would be fine, needed a family.  I was happy to make her part of mine.  When we got home from California, I told myself that I was going to go through all of her medical records from her NICU stay.  I tried.  I needed a dictionary for every other word.  I quit and just used the discharge summary given to me for the doctors here at TCH.  I recently looked through them again.  The sad thing?  I can understand them now.  Now that I understand so much more, I have been researching fetalis hydrops again. I don’t have any pictures of Bella as a newborn, but I have googled “fetalis hydrops image” and it isn’t pretty. I have learned that of those diagnosed prenatally, only 20% survive.  Of those 20%, only 50% will make it through the neonate period.  It helps me to understand why her lungs are so damaged.  I have had so many questions of why at almost three is she sitting here on a vent.  I’m beginning to discover some of the answers.