7 months, Plus One Week ...

Emma has been home for a full week. We have yet to find our groove - she has not completely settled into a schedule, and she is still fragile in my eyes. I cannot comfortably allow her to eat as she pleases, or sleep as she wants. The ugly spectre of NEC is still looming over us, as a relapse is always a possibility. We cannot leave the house because it is too great a risk for her diseased lungs. She remains terribly jaundiced, though, in time, the damage the TPN did to her liver should resolve itself. I remain hyper vigilant about the number and consistency of stools she produces each day, as any change could indicate intestinal woes of a serious nature. Her sleep is light and, at times, troubled. I, myself, feel a bit woozy with fatigue. But, I believe I speak for my children as well as for myself when I say, we would not have it any other way. We were well aware of the conditions we would have to live under if Emma made it through her trials. The children knew about the freedoms we would have to sacrifice as we enter "lock-down" mode. And they are doing well. There have not been any complaints - perhaps a grumble or two as we are in close quarters with one another day after day. Emma makes it all worthwhile with her beautiful smile in response to our interactions with her. She is as feisty as ever, screaming with displeasure when her feeds are delayed the slightest bit. She is a wonder, I am in awe of her presence, and I am ... blessed.