Heni's story - Part 3

I don't remember much (from memory) of the first few years of life after Heni being born... it was one great long blur... a period of time in which I felt like I was in a black hole...constantly tired (hey what's changed?) and in a state that I can only call mourning.
I wondered every single day how long my precious little bundle was going to be around, but also at the same time trying to make the most out of whatever time that we had.
It's a weird "paradox" (that I still haven't quite managed to come to terms with fully)...
It's a mixture of mourning for the child you didn't have, mourning for the child who is still with you (but who may not be with you). This is mixed with the loss of a life that "could have been" but all the time trying to live here and now as normally as possible, trying to deal with the hand life has dealt you. At the same time, being ever mindful and grateful that I am a lucky one who still has the gift of a beautiful child who I can hold, love and enjoy. (Go figure that one out!)
All I can say is that it's a good job that I kept a photograph album and a journal to help me remember some of the things that she got up to during that very hard place and time.

Heni's Story - Part 2

  It's a good job that Heni had those three extra weeks inside of me to be nourished and grow a bit more. I think the fact that she weighed a hefty 5 lb on her arrival meant that she had at least a fighting chance to survive. Sadly, most of the babies with Edward who are born alive are much smaller and fail to thrive. Over the first number of months she lost a considerable amount of weight as feeding was extremely difficult for her. She found it virtually impossible to suck because of the very high palate in her mouth...when she finally did get enough milk she would throw it all back up again and thus the cycle of "express, feed, vomit" was established. Hour and hours and hours of it.