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.

 

 

this is 13

I am no longer the mother of a child.

:::sob:::

I’m kind of glad that I have been sidelined the past four days with an ugly, ugly stomach bug because I haven’t really had time to really feel all of the emotional feels going on with the reality that my baby boy is THIRTEEN!!!

OMG!

But factor in the usual emotions that roll around every year just in time for his birthday when I think about his precarious beginnings, yada, yada, yada. Yeah, I know, I talk about all of that too much, as most parents of 1lb babies who survive past their first birthday do. Daniel knows too well. He mostly appreciates it too. But today he is thirteen and he’d much rather do what he wants on his thirteenth birthday as most teenagers want to do.

Yeah, as much as he won’t admit it, he was probably glad that mom has been sick.

Every chance he got he told me that today was the best birthday because this is thirteen.

Happy birthday my beautiful, wonderful, miraculous son!

 

adjusted for prematurity

Yes, today is World Prematurity Day because one in nine babies every day are born much too soon. Check out #WorldPrematurityDay and you shall see hundreds and hundreds of images of babies who literally can fit into your hands wearing diapers no bigger than a saltine cracker and you shall see pictures of some of those same tiny babies as smiling school aged children or teenagers or even adults. My own social media timelines are flooded with images of some co-workers own preemies and friends and the parents of former patients as we recognize the tiniest but mightiest humans we have ever known not necessarily to celebrate but to remind everyone that in spite of amazing strides in Perinatal and Neonatal medicine and nursing care, prematurity still happens and when it happens the adjustments for prematurity happen.

age 1 month/28 weeks adjusted age; 792 grams/1lb 7oz

I remember having to explain way too many times the adjusted age of Daniel during the first few years of his life. How that adjusted age seemed to annoy some as they would sarcastically question if we were going to be using his adjusted age when he was a grown man.

Perhaps.

Maybe.

What do you care?

As he has grown and developed, knowing Daniel’s adjusted age helped so much in understanding this life living on preemie time. It helped to have just a little more patience when he didn’t walk until age 30 months (26 months adjusted age) or when we struggled so mightily with potty training and eating. But the fact of the matter is that after the magical age of 2 or 3, adjusting does not abruptly end. Experience has taught me that these tiny humans carry so much more than the physical scars of needle pokes, TCM burns, healed incisions and chest tube scars. The bright lights, the loud, clanging alarms, the noxious smells, even certain touches remind them of the trauma they survived that was intended to help them survive. PTSD is readily accepted in adults after hospitalization, why would it not be valid for a tiny infant whose brain isn’t even fully developed and spends weeks, months even in an intensive care setting? Just because they can’t articulate it does not mean that it is not real.

The fact of the matter is for this child, this boy, there is always adjustments for his extreme premature birth. Adjustments in how he learns, how he expresses himself, how he eats, how he grows, how he handles noxious stimuli, how he reacts in stressful situations. Adjustments because he is who he is. We have come to learn and understand so much of who this boy is and what he is passionate about just by adjusting. He’ll never stop being an individual who was born 4 months too soon. He will always be that. Today, and every day, we honor that, we celebrate it, we accept it and, yes, we adjust.

I feared because it was too early, I cried because it was too soon. Yet I underestimated the strength in one as small as you. ~ Unknown

 

 

because “a child will never starve themselves”

Raising my boy child I have learned to not always rely on the tried and true that helped me to survive raising his four older sisters. Boys are definitely different from girls and extremely premature babies are different from full term babies…even when one factors in the adjusted age that managed to annoy some family members.

In order to be discharged from the NICU after a 4+ months stay, Daniel had to be able to take by a bottle 2 ounces of formula every three hours…2 ounces, 60 milliliters, just 12 teaspoons of milk. Really no big deal except that it was a big deal for him. It was a struggle. A real struggle. Have you ever tried to swallow liquid with one of your vocal cords is paralyzed so they can’t effectively protect your airway and lungs while you swallow?

The struggle was and is real.

Sometimes the baby boy was just too tired and couldn’t drink those 12 measly teaspoons of milk…and sometimes it was just too hard and too scary drinking milk and feeling like you’re going to drown all at the same time. Still Daniel’s nurses and we worked hard to get him home working on that drinking 2 ounces of milk 8 times a day…especially after mommy had a major meltdown and kind of went ballistic with a colleague, who as Daniel’s nurse, made the nursing decision as a well-qualified NICU RN to feed him by a tube into his mouth, down his esophagus and into his belly after he failed to eat 2 ounces three times in a row on her shift.

I just wanted my baby boy to come home…oh, and worst Mother’s Day ever.

But FINALLY, glory hallelujah, he did it three days in a row and he was allowed to come home.

And we thought that it was hard to get him to eat in the NICU.

As the weeks went by it was clear just how real the struggle was for our son as he soon stopped eating…STOPPED.

Paralyzed vocal cord

Trachealmalacia

Laryngealmalacia

Reflux

Chronic Lung Disease

So many things going on with this son of ours all at once that required so much more energy than eating and so he stopped eating…literally…and it became all we ever did…try to feed our baby.

All the time.

Failing at it.

All the time.

We tried to tell the pediatrician assigned to his care until his adoption would be finalized but he was certain we were wrong or perhaps not feeding him on purpose because “A baby or child will never starve themselves.

A very small part of me silently cheered when Daniel proved that know it all asshat wrong refusing to eat for over 36 hours with nurses trying to feed him when he was hospitalized with a Failure to Thrive and Munchausen’s by Proxy diagnosis. But only a small part because the only alternative was feeding him by a tube…

for the next four years.

So much work to teach him how to eat, how to safely chew and swallow without food or liquid going into his lungs…how to trust that he could do this…to not be afraid.

And we thought bottle feeding him was hard.

OMG!

Some days we literally were crying and screaming inside, “You have to fucking eat!

Okay, most days.

Actually every day.

And eight years later we still do sometimes.

Thank goodness it’s no longer every day because even he now understands that You Have To Fucking Eat.

Definitely not a children’s book. I recommend you read it while drinking a Scotch neat…read the book and you shall understand.

 

 

 

 

play it again: boundaries

Originally published October 11, 2010

As parents, we are forever putting up and enforcing boundaries. It’s our job. Our kids believe that we enjoy putting up barriers and roadblocks to hinder them and hold them back in spite of our assurances that we do not enjoy this part of our job…let’s keep it our secret that we enjoy this part…a lot!

But seriously, as parents we encounter boundaries and barriers all the time that are put into place by our own hand, our own words and our own heart. We don’t expect that there will be barriers and boundaries that keep us from our own children. Thrown into the vortex of the NICU or the PICU with a critically ill newborn or child is definitely one of those places where a parent will suddenly find that they have little if no control at all. Even worse, from my own personal experience, is when you, the parent, is also a medical professional. Your child, your baby is critically ill and you have a very good understanding of exactly what is going on. For any parent, it is very easy to bump up against the boundaries of a NICU or PICU setting. For the parent who is also an experienced nurse, a physician, it is almost a given that the barrier between parent and medical professional will be broken down. What else could possibly happen. We, as parents, are frightened to near death seeing our own child in crisis. As pros, we can run through our mind the worst case scenario and outcome with a few blinks of an eye. It’s painfully hard not to try to intervene. We’re parents…we’re good parents. We just have bumped against the barrier that separates us the mom or dad and us the nurse or doctor.

I recall one night in the NICU where I pretty much blew down the barrier between me the mom and me the NICU nurse. Daniel required a ventilator to breathe for him for the first 11 weeks of his life but he often would self extubate knocking loose or even grabbing a hold of and pulling out the breathing tube he needed. What can I say, he was a fighter who drove his care team crazy. This one particular night, I was visiting and helping his nurse bathe and weigh him when…oops, he did it again. As his nurse, respiratory therapist and neonatologist prepared to re-intubate him, there I was standing over him watching him become paler and seeing his little chest caving in exposing every single rib as he struggled with each breath. His care team gently tried to have me step aside but I could not be moved.

“I think he can do this. I think we need to give him a chance.”, I stated as the alarms on his monitor argued loudly otherwise.

It was then that Daniel’s doctor, a colleague and a friend of mine, demanded that I step out of the room now. Before I could argue back, she told me she would come get me when she was done. I stepped out of that room and it suddenly hit me. I crossed that line. I actually crossed it in such a way that I was hindering my own child’s care. My behavior was putting him into jeopardy. Just thinking that brought the flood of hot tears. I ran out of the unit crying.

After what was certainly an eternity, Daniel’s doctor came out to the waiting area to get me. Hugging me, she assured me that Daniel was easily re-intubated and back on the ventilator, pink, stable and now sleeping in his bed. She then faced me colleague to colleague and asked me pointedly if I honestly, as a NICU professional, felt that Daniel was ready to breathe on his own…if he was my patient and not my child, would I have argued with her that way. Of course I knew the answer was no. No, of course I wouldn’t and I knew that. It was then that Daniel’s doctor built up that boundary brick by brick that separated me, the NICU nurse, from me, Daniel’s mom. In order to be the very best mom for my child, I could not, should not, would not be my child’s nurse. It wasn’t easy. It has never been easy as Daniel’s mother or as Zoë’s mother or as Jodie’s mother and certainly as Holly’s and as Hazel’s Mi-Ma. I can’t offer a how-to. All I can offer is that sometimes, for the sake of our children, there are boundaries for us, the parents. Of course we don’t have to like it, we can even push against them if we dare. But just like the ones we build for our children, these boundaries are there for the sake of our children.