Thursday, April 28, 2011

Hospital Part 2 - Questions a Parent Should Never Face

It's funny how time changes things. How experience and perspective matter. How much difference it is coming into a situation with knowledge rather than with fear.

Not that there isn't fear, when it comes to Leaf and this pregnancy. But that the NICU experience isn't some unknown fear. It's a known, defined thing. We know the risks. We've seen the risks first hand. We know that Leaf needs more time - 24 weeks is survivable, yes...but each day, each week longer means fewer problems and less therapy and less intervention when we come out the other side. We've done 27 weeks with severe breathing issues, and I'd give almost anything to make it to 30 weeks this time.

Even knowing that Leaf is now the size Acorn was at birth....we need those extra weeks.

We'd already been asked standard questions by the first round of nurses and residents: planning to breastfeed? you had a c-section, were you planning that again? etc etc etc. Not that this hospital is known for being VBAC friendly, but my OB has thus far been on the side of at least giving it a go...he's actually the one who suggested trying for a vaginal birth with Acorn, even as early as he was, because it would be better for both of us, recovery wise.

At any rate, they sent a neonatologist down Monday afternoon. Things were bad enough that there was a small possibility that Leaf would need to be born right away, and they needed to be in on the discussion. They sent Dr R - we don't know her all that well, but we remembered her as the lovely young Muslim woman they hired after Acorn got his trach.

She was not one of his primary docs - by then we had the head of the department and the doc who'd done his admission covering his care, and the team working sort-of together to make big decisions. But Dr R was on duty the night Acorn's brand new g-tube button came out, only 36 hours after it'd been put in (he'd had a PEG tube before that), and could not be re-inserted.  We hated that night's nurse, but Dr R and the nurse practitioner worked together and saved Acorn's stoma, and got the button back in, even with the fairly useless surgical resident's helplessness, without having to send Acorn to the OR yet again.

Dr R said that we looked familiar and that our names were familiar; she knew that our previous birth was a 27 weeker with a trach. It took some talking about things, but then she placed Acorn's case in her mind. She said that the standard cut-off for viability is 24 weeks (which we hit Tuesday) - but that they take cases earlier than that based on how the baby is doing. Babies who are immature for their age are less likely to do well long term, for example, so there is less of a push to resuscitate at that point.

Nurse M tells me they have a special program now for 25 weeks and earlier, and that there's some research going into better outcomes for the really early ones, but she's not thrilled with the way some of it is being handled. As I mentioned in a previous post, she suggests a full term delivery, or as close to it as possible - duh!

Anyway....Dr R said that clearly, we're going into a possible early delivery with more knowledge and experience than most families she talks to, and wanted to know what our thoughts were. I guess we gave her kind of blank looks...because after a brief pause she said, "you know what this is like; if there's any question about your baby making it, do you want us to resuscitate or not? Do you want to fight for this baby?"


I hate to be so flip about it, but DUH! Of course we do. Sure, we'd really prefer to need to fight less than we've fought for Acorn...but to not fight at all? To have come so far just to walk away?

Not something I can do. Not here, not now, not after all this.

And not a question I ever want to have to answer again.

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