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.
He was a great eater during the first stage, but after Elliott’s second open heart we experienced what all the doctors warned us about. He wouldn’t eat. He was older now, more alert and full of plenty of meds that if given to any adult would make them lose their appetite too. We tried everything we could. We rocked in a dark corner of the room to keep away from distractions, we upped the pain meds in case that was an issue, we took away pain meds to see if they were making his stomach sour, we tried feeding upright, we checked for ear infections, we checked for thrush; we exhausted every possible idea as to why he wouldn’t eat. They talked of NG tubes and for the first time my husband and I experienced that searing pain and frustration that comes with your child not eating. And it felt even harder knowing how he was before, how eating was NEVER a problem, and didn’t foresee this being an issue. We cried and we prayed that he would eat enough for them to feel comfortable sending us home because I knew once he was away from the hospital things would get better. And they did! As soon as we were discharged and back in a quiet setting he began to take his bottles almost immediately. The fear and anxiety washed away and we felt like we had our Elliott back. We jumped and kicked and screamed when we successfully introduced solids because we get it, we know what a big deal that is and there’s not a day that does by that we aren’t extremely thankful. These victories, while small to some people are HUGE for him, HUGE for us.


  1. I'm crying tears of joy! Love that chunky monkey!

  2. I love you my sweet Amber. So beautifully written. I love my handsome boy Elliott. He is so loved....and so happy!!