parenting NICU style

Wa-ay back when I was a nursing student, one of my professors shared a cautionary tale about patients and medical abbreviations. A nurse, preparing to assess her patient, sets down her clipboard. While she is carefully assessing her patient, the patient spies his name on her clipboard with the word “SOB” next to it. What followed, the professor shared, was more than awkward for nurse and patient.

In case you didn’t already know, “SOB” is a medical abbreviation for shortness of breath. The nurse’s patient had emphysema and indeed was struggling with shortness of breath. He might have also been an SoB too…then again, he might have been an all around nice guy. Who knows?

There were many takeaways for us to learn from that scenario that the professor shared. For me, the biggest one was to not let my patients or loved ones see my shift notes. I keep them in my pocket.

This lesson came to mind the other day while reading through one of the micropreemie parenting forums I participate in. A parent shared her frustration of over-hearing her baby’s nurse share with the nurse taking over her baby’s care that she had been crying. Not understanding what that had to do with anything, she vented that they should not be worried about her because their job is to take care of her baby. Who cares if she was crying? The NICU nurse in me wanted to comment as to why the nurses might have been talking about her during their hand-off report. The NICU parent in me knew that she just needed to vent because for many micropreemie parents, there are few, if any, safe places to vent off some of the tears, fears, pain, frustrations and anger that is life as a parent in the NICU.

As a parent in the NICU, I know too well that feeling of being watched over, scrutinized even. In the NICU where Daniel was, where I also worked, parents had access to the bedside chart and were more than welcome to look at it. It was not uncommon to see a note or more about Bill or myself visiting Daniel. Weird to be under a microscope and analyzed in that way…especially because we already felt intense pressure from social workers, family and friends who questioned our motives to want to be Daniel’s family. Stir in the fact that a number of my own colleagues were against our plans (and quite vocal about it) and my being called into my manager’s office a couple of times because staff and administration had a number of concerns about my wanting to adopt a patient in the unit because something like this had never happened at that hospital before. “People might think we are ‘giving babies away at Good Sam’!” 

The horror of such a thing! 

Not fun it was.

If only there was a forum like the one I participate in thirteen years ago!

With most NICUs in the US focused on Family-Centered Care and many hospitals keeping an eye on overall patient and family satisfaction, odds are families are going to be right there during change of shift hand-offs and rounds…unlike the “old” days when I was a baby NICU RN and the unit was closed to family visits and calls during change of shift so that we could focus on the hand-off of patient care.

Being a parent in the NICU is hard. Other people seem to know more about your own baby than you do. They tell you when you may touch them, when you can hold them, feed them, change their diaper. You feel guilt that your baby was born early, that you can’t be at their bedside 24/7, that your other children need you, that your husband needs you, that everything else going on in your life is being ignored. You deal with questions…questions all the time as to why the baby was born early, what did YOU do to cause that, what’s going on currently with the baby, why isn’t the doctors and nurses doing what your co-worker’s nephew’s baby had done to her, why aren’t you at the hospital right now, why aren’t you spending time with your other children because they need you too….and on and on and on. Doctors and nurses and staff either seem to act as though you’re not even there or are hovering not giving you just a quiet moment alone with your baby. And god help you if you break down and cry or yell and scream in the NICU, at home, in church, at the school drop-off, in front of your parents or your in-laws.

NICU parents, am I close?

For what it’s worth, speaking as a NICU RN, when we share with colleagues that mom was crying today, or dad keeps asking the same question repeatedly or the family’s only car broke down or almost anything else family-related it is because the care we give is Family-Centered Care. Our role is to care for the baby first but we also are caring for and supporting the family during one of the most stressful times in their lives as a family…until their baby is a moody teenager. It helps the staff to know that mom is having difficulty producing breast milk or that her mother in law doesn’t want to drive her to the NICU anymore or dad just got laid off or little brother is sick with the flu so that we can better address what the family and the baby needs right now…and what they need to be ready for discharge because, god-willing, discharge will happen sooner than a NICU parent can hope to imagine.

What an amazing day that is when your baby is finally free of every single wire, tube and tape that is attached to his body and you pick him up and hold anytime you want to!

It’s a day that every NICU parent and NICU nurse, doctor, respiratory therapist, social worker and unit coordinator looks forward to as well.

Meanwhile, dear fellow NICU parents, cry if you want to, vent away too, but most of all, hang in there. Your journey is just beginning and this right now is preparing you for the weeks, months and years after the NICU.

 

 

for the future important people

This week in my social media:

And one special gem that made me smile and made me cry.

Dr. Carey D. Andrew-Jaja’s joy shines out like a bright beacon in this video. It reminded me of the fact that for the last 25 years I always whisper “happy birthday” to each and every tiny human I have the privilege of greeting on the day that they are born because this day really is a day to celebrate meeting a future important person. Oh, and I am reminded once again that I do have the best job ever shaking the hands of countless important people.

The mother of this one reminded me yesterday that she turned 9 years old. Honestly, it seems like it was yesterday when she and I shook hands for the first time.

 

 

resting can be hard

Moms, remember when our babies were brand new and the well-meaning, but not asked, advice givers would tell us to rest when the baby sleeps and we might have ignored that advice in the beginning?

Remember?!

The baby is FINALLY asleep!!! OMG! I can take a shower and maybe shave my legs and armpits and blow-dry my hair I might put on makeup and I am definitely putting on clothes, real clothes and then I will take care of that sink full of dishes oh and the laundry who knew an 10lb baby could create so much laundry and I will watch all the tv and write thank-you notes and…

WAAAAAHHHH!!!!

There you are, dripping wet and wrapped in a towel. 

Damn!

And after changing the baby and feeding the baby and changing the baby again and rocking the baby, you realize that you might have slept 30 minutes in the last 24 hours and it dawns on you…

You should have taken the time to rest/sleep when that little baby was down for maybe an hour…that same hour that you made plans to do all kinds of stuff that really didn’t need to be done because this tiny new baby never sleeps.

Oh what a blessed hour it would have been too.

You learn…eventually…hopefully…perhaps after the third baby. Then the well-meaning, but not solicited, advice givers will judge you as lazy.

Resting, when we should, can be hard. There’s so much to do. So little time.

About 5 weeks now into my formal half marathon training, which by the way is going GREAT, I come upon an extra rest day. A rest day on a night that I am working in the NICU.

Hmmm…

I always run a quick 3-4 miles before work because I do. It’s part of my getting ready for 12 hours of taking care of tiny humans all night long routine. Last Friday I ran 3½ miles before work and then ran 7½ miles Saturday afternoon with no problem at all. I need to run before work, I tell myself. There is no way I can get through my night with out a little run before.

Then the rational part of me, the part of me that actually listens (sometimes) to well-meaning, good advice reminds me of what Hal Higdon says about rest:

The most important day in any beginning or intermediate running program is rest. Rest days are as vital as training days. They give your muscles time to recover so you can run again. Actually, your muscles will build in strength as you rest. Without recovery days, you will not improve.

But it’s hard!

I need the before work run!

It’s a Friday night.

The census is up.

The acuity is high.

I really need to run.

SIGH!

I need the rest day too. My body needs the rest day. My mind probably does too. Resting IS fitness training.

Fine, I’ll rest.

Apologies to my colleagues if I get all twitchy.

Resting can sometimes be so hard.

numbers for the ass-hats, anti-vaxxers and other nimrods

This morning I came home after a pretty busy 12 hour overnight shift in NICU-Land to a very sick little boy, who has been sick all weekend with god-knows what because he has no fever, no appetite, is pale and is coughing and wheezing.

I need to remind myself that he is thirteen and no longer a little boy except for the fact he is pale with dark circles under his eyes and mostly wants to just lie on the couch with one of his sisters, Zelda or his mom close by for comfort and reassurance as he struggles to breathe.

But I digress…

I come home after a busy 12 hour overnight shift in NICU-Land to a sick child. I am exhausted. He is too as breathing is work right now. All we both really want to do is just curl up in bed and sleep except…

My new, next-door neighbor is busy building loudly just under my bedroom window…where the sick child and I are trying to rest and sleep a little. Hammering, drilling, loud, loud, loud, loud!!!

Ugh!!!

I get up and go out to talk to my new neighbor…asking how long is he going to be hammering, drilling and using his loud, hydraulic equipment to erect this thing under my bedroom window is going to go on.

He’s going to be here awhile, he tells me. Is that a problem?

Well, yes. I tell him why. He looks at me for a beat, shrugs and tells me he has to get his tuff-shed built now. Then being the awesome new neighbor that he is, he moves all the loud hammering, drilling and hydraulic equipment action over directly under my bedroom window because ass-hat neighbors are the best neighbors when you are a night-shift nurse sleeping during the day.

I give up on sleep and focus on caring for Daniel and plotting as my friends and I are currently planning my revenge on Facebook. I’m sure that I won’t follow through because I am me. Although the tossing handfuls of birdseed into his yard certainly does appeal.

Truthfully, I don’t expect my neighbor (or even my family) to be silent during the day when normal people are living their lives as they do while the Vampires that is the nocshift are trying to sleep. Twenty-five years of daytime sleeping has given me strategies for sleeping when I can, where I can and learning to cope with those strange daylight dwellers. Still a part of me expects, wishes, hopes and dreams for the daytime species to at least give me a heads up when they are having a party going on right here, or are digging a pool or building a shed directly under your bedroom window…not because I am basically a bat…no…how about because of common courtesy…being a good neighbor…with good manners.

Hey, I am going to be building shit directly on the other side of our fence and it is going to be real loud for a few hours and I don’t know if it will bother you or not but I thought I should at least give you a heads up that it is going to be real loud here between our two homes.

Is that hard?

For some yes.

I might be getting some bird seed and soon…

Meanwhile, in the news, mainstream and Fox and even all over social media is the Measles. Today’s moment of pure WTF idiocy came courtesy of my own Facebook timeline:

This whole battle of those who didn’t vaccinate their kids bugs me. We were all doing fine until millions of illegals were allowed across the border against our laws. Stop the infighting and let’s blame the real culprit.

Um…

Wow.

Of course everyone has an opinion about the measles and to vaccinate or not to vaccinate now that measles has been in the news since December. Opinions are strong too. Mine is vaccinate your kids…dammit! I’ve said it before and I will say it again.

But let’s look at numbers because even nimrods have opinions…Facebook timeline proves that every day, literally.

102: The number of currently confirmed measles cases in the United States to date this year.

59: The number of 2015 measles cases linked directly to a December 2014 visit to Disneyland. Eleven more cases linked to Disneyland were caught December 2014.

More than 1,000: The number of people in Arizona that are currently being quarantined and monitored for 21 days for possible measles exposure…that can be linked to the December 2014 Disneyland visit. Measles is that contagious.

90 percent: The number of people who are not fully vaccinated who will get the measles if they are exposed to the virus.

2: The number of hours the measles virus can live, either in the air or on a surface. It’s much more transmissible than Ebola. Before 1963, an estimated three to four million people in the U. S. got measles every year, and of those people, 400 to 500 would die, 48,000 would be hospitalized and 4,000 would develop encephalitis.

1968: The year that the measles vaccine as we know it today was developed and first distributed. The vaccine dramatically lowered the number of cases and in 1989, when a second measles vaccine was recommended the measles rates dropped even further.

1968 was also the year that I came down with measles (yes, I had both measles and German measles as a small child). Mommy-Dearest was pregnant with my sister, Valerie. My brothers had not had measles. So six-year old me was separated and quarantined for a little more than three weeks away from my family. What first grader wouldn’t be able to handle that and not be afraid? Stir in the rare complication of optic neuritis and yes, measles are indeed marvelous for a small child! True I get to enjoy a lifetime of immunity so no shots for me but whatever!

2000: The year there was no continuous measles transmission for more than 12 months which meant measles had been eliminated in the U.S.

No more measles!!!

Whoo-hoo!!!

Unfortunately an increasingly connected world and decreased vaccine rates because of people blindly believing “Doctor” Wakefield’s made-up studies and personal beliefs and whatever bright, shiny belief held fast to have collided to create measles outbreaks all across the U.S….the same nation where 15 years ago there was no measles.

That’s super awesome!

20 million: The number of measles cases around the world every year.

92-94 percent: The herd immunity threshold or the number of the population needed to be vaccinated to interrupt the transmission of the disease, especially to the more vulnerable of the population who can not be vaccinated.

9 percent: the number of students at my son’s school who currently have opted out of vaccinations for medical or personal exemption.

75.1-80 percent: The percentage of school-aged children here in the Central Valley who are immunized.

1 in 10: The number of children with measles who will get an ear infection which sometimes can result in permanent hearing loss.

1 in 1,000: The number of children with measles who will develop encephalitis, or swelling and infection of the brain. This complication can leave children deaf or mentally impaired.

1-2 in 1,000: The number of children with measles who will die from the disease. You know, like Roald Dahl’s little girl back in 1962. So no, the measles isn’t a harmless childhood disease.

0: The number of anti-viral therapies that exist for the measles. Unlike the flu or HIV, there is no anti-viral treatment for the measles. The only option is to support and treat the symptoms, let the disease run it’s course and hope for no complications.

There’s that. and nowhere do millions of illegals allowed across the border against our laws come into the picture.

Vaccinate your kids! Get your own titer checked and, if need be, get a booster or be an ass-hat nimrod. But if that is what you must be please make sure you have some really good insurance because the rest of us do not want to pay for your stupidity..truly.

 

forever devoted to those committed to my care

While talking on the phone to a patient’s family, they tell me that it makes them so happy knowing that I am there taking care of their loved one.

And in that moment, I am reminded of just one of the eleventy million reasons why I am lucky to have the best job ever.

Eleventy million?

Yes, in spite of my suspect math skills I know that isn’t a real number. But it should be as it represents a virtually infinite number of reasons why I love what I do. Every day there is something to remind me like hearing a parent express to you their trust and their gratitude.

It’s what I do and I love that I get to do what I do. It’s what I pledged to always do almost 25 years ago when I received my nursing degree, as I recited the Nightingale Pledge.

I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug. I will do all in my power to maintain and elevate the standard of my profession, and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. With loyalty will I endeavor to aid the physician in his work, and devote myself to the welfare of those committed to my care.

Composed in 1893 by Lystra Gretter, an instructor of nursing at the old Harper Hospital in Detroit, Michigan, it was first used by its graduating class in the spring of 1893. It is an adaptation of the Hippocratic Oath taken by physicians. While the words are dated, the meaning rings true today as I put on those scrubs, pick up my patient assignment each night and spend the next often exhausting 12 hours caring for tiny humans and their families.

Coincidentally this past week in Michigan, the Michigan House of Representatives, led by Speaker Jase Bolger just passed the bill, HB5958, that would allow discrimination to become sanction by the state. The Religious Freedom Restoration Act, akin to one that made nationwide headlines in Arizona but was vetoed, appears to merely force the government to step aside if a person’s “deeply-held religious beliefs” mandate they act, or not act, in a certain manner. Although subject to legal interpretation, under the Religious Freedom law, a pharmacist could refuse to fill a doctor’s prescription for birth control, or HIV medication. An emergency room physician or EMT could refuse service to a gay person in need of immediate treatment. A school teacher could refuse to mentor the children of a same-sex couple, and a DMV clerk could refuse to give a driver’s license to a person who is divorced.

Personally I share the frustration and outrage expressed by friends who identify themselves as LGBT over this legislative action. I doubt seriously they will seek out a church who preaches hate from the pulpit to preside over their wedding vows, or a ultra-conservative Christian bakery to make their wedding cake or do any other business transactions with those that openly expresses such hate. But imagine an openly LGBT person seeking emergency care in a hospital. Can a healthcare worker really refuse to provide emergency, life-saving care to them because it goes against their deeply held religious beliefs? Would a god actually condemn someone who has studied and pledged to provide care for all individuals needing it?

In 1950, The American Nurses’ Association adopted a Code for Professional Nurses that applies to all nurses, including those involved in patient care, administration, education and research.

Provision 1:
The nurse, in all professional relationships, practices with compassion and respect for the inherent dignity, worth, and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems.

Provision 2:
The nurse’s primary commitment is to the patient, whether an individual, family, group, or community.

Provision 3:
The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient.

Provision 4:
The nurse is responsible and accountable for individual nursing practice and determines the appropriate delegation of tasks consistent with the nurse’s obligation to provide optimum patient care.

Provision 5:
The nurse owes the same duties to self as to others, including the responsibility to preserve integrity and safety, to maintain competence, and to continue personal and professional growth.

Provision 6:
The nurse participates in establishing, maintaining, and improving healthcare environments and conditions of employment conducive to the provision of quality healthcare and consistent with the values of the profession through individual and collective action.

Provision 7:
The nurse participates in the advancement of the profession through contributions to practice, education administration and knowledge development.

Provision 8:
The nurse collaborates with other health professionals and the public in promoting community, national, and international efforts to meet health needs.

Provision 9:
The profession of nursing, as represented by associations and other members, is responsible for articulating nursing values, for maintaining the integrity of the profession and its practice, and for shaping social policy.

As an American, I am thankful for the First Amendment affording me and all American citizens the right to religious freedom…praise god for that! As a person who mostly identifies as a Christian, I am compelled to live by the Greatest Commandment especially in loving others as I (should) love myself. As a Registered Nurse, I am equally compelled my vocation, my pledge and my code to provide the best of care to each and every tiny human who passes through the NICU where I practice, regardless of who their parents are…whether they be straight, gay, married, single, under-age, US citizen, immigrant (legal or illegal), homeless, addict, mentally ill or convict. A life is a life and always precious and worth preserving to the best of my abilities as a nurse. Discrimination of any kind has no place anywhere in this day but especially in an acute care setting where I do what I do. Shame on Michigan House Speaker Jace Bolger and the Michigan legislature as well as anyone who cloaks themselves in such a ridiculous, hateful, discriminatory law in t6he name of whomever they choose to worship!

Let us be anxious to do well, not for selfish praise but to honor and advance the cause, the work we have taken up. Let us value our training not as it makes us cleverer or superior to others, but inasmuch as it enables us to be more useful and helpful to our fellow creatures, the sick, who most want our help. Let it be our ambition to be good nurses, and never let us be ashamed of the name of ‘nurse’.

~Florence Nightingale