Thursday, January 16, 2014
A battle beyond the heart
Doctors always warned us. And I knew that after I googled pictures of babies with Hypoplastic Left Heart for hours on end that those pictures told stories... stories of kids struggling to eat by mouth, struggling for days and weeks on end in the hospital just trying to do something so instinctive. Weight gain slowly turning into weight loss and tired, frustrated parents were in tears because they couldn’t understand why their baby wouldn’t eat. The words “discharge” hesitantly roll off the tongue of nurses, because they want to be hopeful, but they know that without weight gain these babies would stay put, and if you want to go home a g-tube is sometimes the only answer. I never gave it a second thought that upon hearing the diagnosis of our son a multitude of other concerns and worries would follow. I guess, then, I didn’t fully grasp what a victory it is when a heart baby can feed by mouth. Elliott, despite what we were told was a fantastic eater from the moment he was born. He even breastfed, but in the days prior to his discharge doctors wanted his milk fortified in order to gain more weight. So I pumped and pumped so that we could fortify the milk. I remember there was one lactation room in the ICU where mothers could pump. In the early hours of the morning moms would walk to and from this room in a tired daze holding their yellow bucket enclosing their pumping kit. The sheer determination of these mothers amazes me still and kept me going in those early days when all I wanted to do was sleep.