as always, sticking together

Almost fourteen years ago, I managed to capture an amazing shot of the men in my life and what proved to be one of my most favorite photos of them.

A photo of the hand of our son, Daniel Quinn, scarcely 30 weeks adjusted age and just 2 pounds and the newest member of the Kilo Club, as he tried to grasp the index finger of his father’s hand.

One year later, as we celebrated Daniel’s first birthday and the finalization of our adoption, it served to remind us just how small he really was and how far he had come then.

A year after that, it would receive a special photo journalism award in a local photography show as it astounded the judges with one who truly was Fearfully and Wonderfully Made…it also irritated a local photo journalist that an amateur photographer would receive such an award…over her entry.

Today that photo is properly framed and hanging amongst so many other treasured photographs of our circus act here under The Big Top.

But today, inspired by the works of Red Methot’s Les Prèmas, I tortured my men with a photo shoot…as a mamarazzi will do.

Fourteen years later we prepare to celebrate tomorrow, as we do every year, because every birthday of a 1 pound baby boy born 4 months too soon is something one must always celebrate. We celebrate our preemie, Notre Préma, as parents should. Tomorrow this most extraordinary and most favorite son shall be FOURTEEN YEARS OLD which absolutely deserves all the shouty caps and everything else that we could possibly offer him. Oh, and I should add that we couldn’t possibly be more proud and happy that we get to call him our most favorite son…as we do every day. On the cusp of completing his fourteenth year, he is suddenly aware of the fact that he is our only son…but yes, absolutely, our most favorite son…something that we all celebrate here under The Big Top.

And it is still true, no matter how old you are, when you go out into the world it is best to hold hands and stick together.

Robert Fulghum

not tired yet

Yesterday was World Prematurity Day and as expected, I shared one of my most favorite pictures of one of my most favorite preemies.

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When he was just one pound, we would nest him using two beanie babies, two lions…and yes, I would call this Daniel in the lions den because…c’mon!

But yes, in recognition of World Prematurity Day and the mightiest, strongest humans I know, I share a picture of the strongest and mightiest one in my heart. The one who calls me Mom.

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He and his lions have come so far, so very far, nearly fourteen years later.

There may come a day where he finds posing with his beanie babies that once covered his tiny, one pound body to be tiresome.

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Today is not that day.

NaPhoPoMo

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!