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Creating a better NICU -- revisited

It's on my mind and it's looking closer and closer to bringing Leda home, so might as well post a few things before it's too crazy...

I don't want the issue of families in the NICU to really move to my back burner though. We've already discussed that, as a family, we'd like to do some fundraising races for March of Dimes, etc. And it should also be said that I want to give Loyola a fair shot at responding so I won't give them a full rant. For all I know, they're like many hospitals and currently planning a redesign of their facilities.

After a couple discussions, some research of what others are doing in the region/nation, and more experience with our current hospital though, I'm not happy with the way families are treated at "ours." I can't say my daughter has received bad care. I'll give them a C. But it borders on a lower grade when you consider that I haven't been exactly getting the idea that they're cutting edge, breakthrough science.

It's just tough to read about other hospitals in Chicago or around the nation that have private rooms or areas for parents to sleep overnight with their sick kids. Other hospitals emphasize quiet for the babies while ours is noisy with talking, alarms, and intercoms. Other NICUs have electronic messaging systems to help staff manage patients. We get circa 1985 audio speakers.

I don't know what I expected. Lots of baby/family focused emphasis on breastfeeding, skin-to-skin care, getting to know your baby, being left alone to bond, daily updates. Heck, something more like a visit to the pediatrician even. What we've got is one big room with beds stacked side by side, no curtains, old equipment being hidden by improv computer screens. The whole thing has an ugly color and the windows are on the far side of the room so very few babies actually get sunlight. It's just so...outdated.

Not that anyone really plans to be in the NICU. It's usually the afterthought on the hospital tour as you plan for a healthy baby. And on the other side, I suspect most people have babies too sick and resources too drained to even care or put up a fight. Because I'm surprised more of a fuss isn't made.

I think back now to the moment I asked about refrigerators in the rooms on the Loyola tour and the woman looking at me like I had 3 heads. The truth is there are other choices in the area and hospitals are like any other consumer product.

Needless to say, we will not be going back to Loyola and have had enough of them, thank-you-very-much. But, even more, I wish I'd done my research. Kelly looks on the bright side that we are close to home so visits take only 15 minutes travel.

Hindsight is perfect, but even more I just don't want other families to have to go through this. It's bad enough to have a sick kid, but to feel isolated and ignored is worse. Don't even get me started on the whims of individual nurses, the lack of communication with parents, or the way your same baby is open to multiple interpretations depending on who is viewing them.

Everyone keeps saying all this will be a memory when she's home. Which is true. But my thoughts and heart will constantly return to how difficult the struggle is and like I keep saying, we're lucky. Other families and other babies not so much. They deserve better.

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