photo dump: brown belt edition

Our “Tae Kwon Dan” has earned his brown belt which really, truly is a huge ass deal, at least to me, when one considers his SPD problems and struggles while he sometimes now must spar with light contact. People touching him…touching, not hugging. Most people can’t imagine the struggle that is. Even those closest to him sometimes don’t get it. Thank goodness his Tae Kwon Do Master teacher does get it.

How far he has come since that tiny 7 year old white belt student!

Still the smallest but size really doesn’t matter in Tae Kwon Do…neither does gender.

Having fun, on the other hand, matters. It matters a lot.

Good bye blue belt.

Hello brown belt!

for the love of the shrimp lover

Because his endocrinologist says he’s not gaining enough weight. Because nothing ruins a delicious meal more than having to say eat your chicken…eat your rice…eat your vegetables…yada, yada, yada, through the entire course of the meal. Because nothing provokes a day filled with anxiety for him than when mom pulls chicken out of the freezer to thaw in the morning. Because this child truly, truly, truly takes the term picky eater to a level that pretty much every other parent ever could never understand…remember when I first started this blog and we were just trying him to get food INTO HIS MOUTH and hopefully chew it and swallow it? Because this child has caused me to break every rule or belief I have had about feeding my family and my family will never, ever let me forget that….EVER!

And because he tells me that he is a shrimp lover as he eats a plate full of shrimp, I keep a big bag of frozen shrimp on hand and have no problem sauteeing a pan full with garlic, butter, lemon and red chili flakes just for him. I just got him to literally inhale more than 100 calories there. He then asks for seconds which I will happily oblige…AFTER he eats his vegetable please.

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