My heart hurts

not for my own kids, but for Alexander.

He’s in the same room as B&D. He was born in April, so he’s almost 5 mos old. He brings me to tears every day. I’ve never seen his family visit.

I found out he’s most likely never going home. He’s on TPN (IV for nutrition). He can’t tolerate feeds. If he can’t eat, then he won’t last long because the liver can’t survive on TPN alone. He’s never been outside, never leaves his crib because he’s got too many hook ups. He’s 5 mos old and is alert and bored.

Today our nurse, kept him company while his nurse took her other patient for a CT. She’s had Alexander as a patient before. She didn’t pick him up, but sat him up and he just looked around and around. He was cooing, I could hear him. Finally a different view for him to look at. I was holding B&D and sobbing so hard. It was the closest Alexander’s been to being happy.

He’s labeled as a difficult baby because he cries a lot. He cries because he’s in pain or discomfort. He’s given Ativan. Nurses who care try to steer away from giving him Ativan. Other nurses have given him 11 doses in one shift. One day last week, he was so aggravated he pulled out 5 lines from his little body which had to be painfully put back in. Ugh, I saw the nurses strap him down and poke his head because they’ve run out of veins in his body.

He’s got a funny mohawk because he has several lines going into his head. The hospital won’t shave unnecessarily (they won’t cut anyone’s finger nails either) so Alexander has this crooked patch of hair running down his head.

I just want to pick him up and cuddle him. I want him to feel loved. I want him to feel the outside air. I want him to see something else besides the same view from his crib.

I don’t know how to feel better. I’ve got to pull myself together for my own kids, but Alexander is literally breaking my heart. What can I do for him? I was ready to donate my double stroller if it could be used to take him around the hospital or even outside. They need something with shelves to accommodate his feeding tubes and tanks. What’s wrong with me, why am I such a mess over this little guy?

I know our babies will come home, it’s just a matter of when. But Alexander won’t make it home. Will he ever feel skin on skin, like I do for B&D every day? Will he ever experience happiness? What can I do for him? He’s got a family, parents who called today. They just never visit. Maybe they can’t. Maybe after 5 mos, the parents had to go back to work. I think they’ve got other kids at home too. Are they keeping their distance so it’ll hurt less when he’s gone? Who cares. They should be at his bedside so he knows he’s loved. I just can’t stop crying over him. I wish I could bring him home with me.