When you have a preemie, the one thing you hear a lot is “in her own time.” As in “she’ll start nursing in her own time.”, or “she’ll smile in her own time”, or “she’ll make I contact in her own time”, or “she’ll have alert periods in her own time”…you see where this is going.
Obi wasn’t acting like a ‘typical’ newborn. She was slow to gain weight, could latch to nurse, but couldn’t transfer enough milk to make a meal. You had to wake her up to feed her at term, 2 weeks past term, two months past term. She wasn’t smiling at 4 weeks corrected, 8 weeks corrected, 12 weeks corrected. She didn’t make eye contact. She didn’t follow sounds. She wasn’t doing things in her own time (own time my ASS I wanted to tell everyone who tried to convince me to just wait it out)…she wasn’t progressing at all.
So, like every crazed sleep deprived woman who spends hours on her own watching a sleeping baby willing her to wake up, I turned to Dr. Google. Now, I am not suggesting this is an activity which is good for your health or your sanity. There is some crazy scary shit out there. But I needed to find some sort of explanation, however unlikely. However crazy sounding. However unpleasant for me.
I came up with a short list of conditions that fit with her behaviour and, on March 26 went to doc to discuss the possibility that “In her own time” was not the whole story. I believed there was more to it and at that appointment, the doc agreed. She felt that Obi had some ‘soft markers’ and perhaps digging a little deeper would be a wise course of action. She didn’t necessarily agree with the top idea on my list, but marked it down and suggested casting a wider net. We were referred to genetics and were sent for a few other tests as well.
Finally, I thought, we’ll get some answers. I am the kind of person who believes knowing is better than not knowing. Even when knowing changes everything.