What I Do

(This is one of the first posts I wrote. I'm republishing it to give context to some of my work-related posts.)


Because, you know, most people don't get it. They think I rock babies all night, and feed them bottles.

I wish. Seriously, when that happens, it's the best part of my job. It doesn't happen all that often, though.

Here's the thing: technology has far outpaced our ability to keep up in an ethical fashion. What I mean is, we have scientific capabilities for many things that are entirely questionable from a moral standpoint.

And I stand at the forefront of all of this as a nurse in an intensive care nursery.

I first felt the twinges of moral ambiguity some time ago, when I was attempting to start an IV in a baby smaller than my hand. Her veins were thinner than the line one might make with a pencil, and I was supposed to introduce a catheter into them, enabling us to provide fluids which would maintain her life.

As my hand was poised with the needle, my co-worker whispered, "Say a prayer."

And I thought to myself, what if the answer to prayer is that I don't succeed?

I mean, really, who am I to thwart God's will? Is it, in fact, His will to torture babies who weigh less than two pounds with needles, tubes down their throat hooked to ventilators, and countless painful procedures, only to send them home months later with a poor prognosis?

You take a kid who weighs around a pound or so and keep him alive artificially until he can be sent home with his parents, and I guarantee that the majority of the time, those parents are signing up for lifelong care of a child who may not ever even, like, speak. Or walk. Or become potty-trained. Don't you think that it may, in fact, have been God's will for this child not to have lived?

And yet. Yet. Let me tell you about some of the most frustrating cases I've ever dealt with. Babies whose parents promise a dysfunctional home life at best, involving drugs, low socio-economic status, no prenatal care for the mother because it's not an option for her, or because she's just not interested.


A baby like this is likely to come into the world prematurely, sometimes on the edge of viability, say, 23-24 weeks of gestation. He may be addicted to the cocaine he had in utero.

Doctors may have told his mother to stay on bedrest, that she was at high risk of giving birth prematurely, but she didn't do it. Maybe she had other children and no one to take care of them.

Maybe she didn't want to be on bedrest, didn't want to use that disgusting bedpan.


Or, perhaps, she just wanted a cigarette.

And so she gets up, does what she wants.

And so her baby is born suddenly, extremely prematurely.

This little guy enters the world weighing about a pound. His eyes are fused shut, and his skin is so fragile that merely placing the leads for his heart monitor causes it to tear and bleed.

His nurses manage to get IVs in him, and start the fluids that will keep him alive. A tiny endotracheal tube is placed in his throat and hooked to the ventilator which will breathe for him.

He doesn't really want to live, though. His nervous system is so immature that his heart repeatedly forgets to beat, and he has to be vigorously stimulated to bring him back to life.

His skin peels and scars under the electrode leads. He has to have repeated blood draws, because his lab values are so out of whack.

His nurses fight back tears, sometimes, when they approach his bedside, because they know they are going to cause him more pain, and really, wouldn't it be the more humane thing to just let him go? What they are doing to him is torture, and all in the name of modern medicine.

Day after day this goes on. No one wants to take care of him, because it is so frustrating. Not the fact that the nurse has to jump up every few minutes as his heart monitor alarms, but because the whole thing is such an exercise in futility. Why are we doing this, tormenting this child, when he is only going to end up moderately functional at best?

And yet. A year later, the door of the NICU opens, and here comes the little guy, toddling and smiling while grasping the hands of his mother, who has, in fact, learned to be one.

"We just wanted to say hi," she says.

And in that moment, all of the bad outcomes are negated. There is no black and white here in the intensive care nursery. Go ahead and spit out your dismal statistics, but the real truth is in the toothless smile of the baby anyone else would have given up on.

19 comments:

Anonymous said...
Marcia,

Your blog is wonderful.


Are you based in Kentucky?

Would it be possible to post some or all of this item about intensive care nursing on my blog?



I'd really like to share it with my readers.



I look forward to visiting your site again.




Sincerely,

Frank Lockwood

www.spirituality.typepad.com

10:30 PM   Marcia said...

Frank, yes, of course, publish whatever you want.



I'm based in Columbus, Ohio.



And wow, thanks for the praise. I'm just goofing around, really; I don't claim to be a *real* blogger such as yourself.

10:34 PM   Left Right Out said...

Hey Marcia,



Thanks for stopping by. I'm on a bit of a blog hiatus at the moment -- one of those things where life interferes with the internet! I did visit you via your comment at Molly's blog, I'm a big Choosing Home fan and I'm thrilled to visit the member's individual blogs too -- so much that calls me closer to God!



I know my feelings aren't exactly the same as the ones you have, but but I work with people with severe intellectual disabilities and/or mental health problems and/or severe physical disabilities. Sometimes I despair at what it must be like for some of them, trapped in their own heads, some quadrapalegics, handled all the time, unable to express what they want.



So often I just look at them and try to be thankful that one day they'll be *free* of all the earthly limitations -- that they will be with God, and know themselves fully loved. And I wonder if we're doing the right thing forcibly treating the cancer etc.




And then one will smile at me as I rub his chest, or reach out to hold my hand, or dance around the room for five minutes because I took her with me to do the washing and let her put in the detergent. And I know that God is with them *now*, that no matter how hard it is to be them they too are touched by grace. That even if I don't always see how, their lives are to His glory. And that's what keeps me going, what keeps me loving my job.



And then there are moments of frustration and humour and fart jokes too :0)



Sorry to ramble on, just wanted to say thank you for loving these babies.




Left Right Out.

5:54 AM   Marcia said...

Wow, LRO, thanks for what you do.

8:00 AM   molly said...

OH MAN.... That was good. And terrible. And good.

3:29 PM   Caleb Powers said...

I've always said that technology is a magnifying glass. It magnifies whatever it touches, without regard to ethics.



Gunpowder has killed millions of people over the world, and allowed millions more to mine coal and other minerals, build roads, shoot pretty fireworks, and, as the conservatives always say, subdue this continent for the betterment of man (though the native americans might have a different take on that).



Nuclear power can produce cheap electricity or the cheap destruction of a city and its inhabitants. And yes, medical technology can save people who some might suggest ought not to be saved.



And yet you have to wonder: Is that four year old you saved going to be the one to cure cancer or invent a clean burning fuel to save us from global warming? Will he be the next Billy Graham, or Martha Graham, or invent the next Graham cracker?


3:56 PM   Marcia said...
Well, yeah, Caleb. There's so much gray area when it comes to technology. There's just no way to establish what's right and what's wrong; you just have to give the maximum to everyone.


10:02 PM   Anonymous said...
Marcia, when your alone with those babies and your heart is ripping out and you feel that warm spot on your shoulder, its God putting his hand on you.


10:58 PM   Anonymous said...
Marcia,


My husband and I adopted a little boy who was born at 28 weeks. He was born with drugs in his system and e struggled to survive those first few weeks. He came to us at 9 months (6 mo adjusted). Expectations of him ever being a "normal" kid were bleak. He's three now and yes, dealing with some delays, but he keeps beating the odds. Above all, he is a happy kid. I tucked him in his bed the other night and noted how cozy and happy he was.

Anyway, I never got to thank all those who cared for him in the NICU, so whenever I meet a doctor or a nurse who cares for preemies, I thank them for what they do. I often think that because of silent prayers whispered over my son in the NICU, he is here today and is, no doubt, a miracle.



THANK YOU!

6:11 AM   Clark Bartram said...

You should check out nenoatal doc's blog and Tales from the Womb. They are both neonatologists with two very different styles of blogging.

11:54 AM   Marcia said...

I have checked them both out, just recently. I had no idea there were so many relevant blogs out there.



Thanks for stopping by.

11:59 AM   Kim said...

Stunning post. Absolutely goose-bump raising stunning.

9:44 PM   Anonymous said...

I loved this post. The only thing that bothered me is how you make it sound like prematurity is most often the fault of the mother. Sometimes everything is done right and babies are still born too soon.

3:39 PM   Marcia said...

That's absolutely true, and thanks for bringing it up.

6:55 AM   Gillian said...

My three month old baby went into a NICU 31 years ago. They flew her to San Diego because no one could figure out why she was in congestive heart failure. Her heartbeat had no rhythm at all and all the nurses whipped around to their babies the minute it started sounding in the room.



The doctors figured out she had 'wandering pacemaker' and ensured that a year later in Las Vegas another baby was diagnosed immediately and put on treatment. That was great. The thing is that the NICU doctors in Las Vegas were horrid to me. I am not sure if it was because they just didn't know what was wrong or if my hanging around 24/7 was driving them crazy but one screamed at me 'Don't you realize your baby could be dying?'



I used no drugs, not even during delivery and had brought her to my pediatrician who had just trusted me when I said something was wrong with her and admitted her. I will never get it.



But the nurses in both states kept me whole. The nurses were the ones who dealt with her. They let me bathe her, told me what was happening with her all the time. They posted a note for me insisting that if someone needed to treat her they had to wake her up first, not do it while she was sleeping. They let me shower there. They collected money to send me to a hotel when she was finally stable and just laughed at me when all I could do was clean up there and come back. They got me a mother's day gift and swore it was from her. They even asked me to talk to a mom who was having trouble getting started with breast feeding. (I just distracted Mom long enough to let the baby get on with it LOL) They gave her a toy before she left and she would smile and laugh for every one of them.




Two years ago I e-mailed the administrators of the NICUs. I knew none of those nurses would still be there but I asked him to post a note telling the nurses who were there that a baby whose life had been saved there had just given birth to a baby of her own. So, they give life over and over again and in ways they will never know.



Thank you for what you do.

10:01 PM   Marcia said...

Gillian, that brought tears to my eyes. Thank you for taking the time to write it.

6:53 AM   ashley said...

Beautiful...thanks.

5:22 PM   Laura said...

I also liked the post. I often wonder what happens if parents refuse treatment. At 24 weeks? 26? 28? 30? Do the parents get to make that choice or is it taken away just because the technology is available and "you just have to give the maximum to everyone"? What if the parent believes in God's will?



The only part I didn't like was the comment on bed rest. I thought the research indicates that it doesn't change outcomes. . .



Laura

10:15 PM   Marcia said...

Hi Laura---I can honestly say that I've never seen a parent refuse treatment. Even in the face of the grimmest statistics, they always want everything done. I'm just not sure how much a person is capable of comprehending at such an emotionally charged time,you know?



As far as bedrest, do you have cites for those stats? I'd be interested in reading that; from what I've seen, it does work in some cases.

10:12 AM