Newest Member: Beschaedigt


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Medical advice needed for "care conference"

I never thought I'd be looking for medical guidance on here... but here I am.

I have twin grandbabies in the NICU; they've been in there for about 5 weeks. (I'm not new to the NICU; I had a 29 weeker myself.) There is something wrong with both of them but no one can figure out what it is. (They're supposedly fraternal but I really wonder if they're identical.)
Their biggest problem is edema in their abdomens and legs. They're so swollen, poor things. They do get diuretics but it just won't go away. They've had secretions in their lungs and are suctioned off and on throughout the day. They're both on oscillators (high speed vents). Their CO2 levels are high at times. They've had infections but those seem to be clearing up. It's really puzzling because one was really good at birth and is now... here. The other had to have major surgery at not even two days old but was getting better... and is now too here.

The neonatologist I've been working with has told me we should meet with a palliative care doctor. They say they're about at the max of what they can do to support the babies. They've run all kinds of tests, even obscure ones, but haven't found any answers yet. (They do know they have a deletion on one of their chromosomes but they don't know what part without further testing. And insurance won't pay for further testing unless they're discharged. Which they obviously cannot be. rolleyes ) So far, everything they've tested for has been ruled out except CF, but I'm told they can't test for that until they're about 4 months old because it's a sweat test. Anyway, they say we "aren't there" yet, but they want us to have information in case we need to make a decision.

The mom is having a really, really hard time with this, so I'm the one who is at the hospital every day and I'm the one talking to all the doctors and nurses. (Please don't at me about that - it's the way it is and if I could change it, believe me, I would.) We're having a "care conference" today to get the palliative care information (the mom said she's going to this; hopefully she will). Part of me wants to fight back and scream at them to FIND IT so we can manage it, if not fix it. But another part of me knows they wouldn't be doing this if they didn't feel it was necessary. I don't know how far to go before saying it's enough. And let's be real, it will NEVER be enough for me... but I'm not the one in question here. But how do I say "enough" when we don't even know what's wrong?

I'm just so heartbroken. I was so worried about maybe having to be the one to raise these babies that I never once thought I wouldn't even have the option.

61 comments posted: Thursday, April 15th, 2021

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