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.

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: the most massive character

I have come to believe that our scars reveal just how strong that we are…how amazing we are…how wonderful we are. I have my son and every single scar on his body to remind me of this truth. Again I am in awe of every single tiny, mighty micropreemie I have been privileged to know and care for thanks to my own.

Originally published September 9, 2013

Daniel came to me the other day and lifting his t-shirt pointed to a circular, pale, silvery scar on his belly just below his old gastrostomy scar.

What is this?”, he asks me.

It’s an old scar from when you were in the NICU, when you were a tiny baby.

But what is it from?“, he presses.

From a transcutaneous monitor. It was used to measure the oxygen and carbon dioxide in your body so the doctor could adjust the machine helping you breathe when you were very tiny and wasn’t big enough or strong enough to breathe on your own. Your skin was very sensitive so they had to move the probe around often or it would leave a mark that was shaped like a circle. That is a mark left behind by the monitor.

He thoughtfully traces the silvery circle-shaped scar on his belly. I can tell he is still wondering about it.

Do you want to see what it looked like on your body? I have a picture.

Oh yes!

So I pull out the little photo journal I have that documents his NICU life in pictures and in words.

He regards the picture, carefully tracing the TCM probe on his back just above the tiny diaper that he wore.

Do I have a scar like that on my back too?

No. The one on your belly is the only one.

He shrugs and then begins to read out loud the words I copied from the nurse who took that picture.

I have a lot of scars, don’t I?

You do. Every single scar shows just how strong you are. How amazing you are. How wonderful you are. I love every single scar that is yours.

He smiles and hugs me tight. “I kind of like my scars too!

Out of suffering has emerged the strongest souls; the most massive of characters are seared with scars.

~Khalil Gibran

the most massive character

Daniel came to me the other day and lifting his t-shirt pointed to a circular, pale, silvery scar on his belly just below his old gastrostomy scar.

What is this?”, he asks me.

It’s an old scar from when you were in the NICU, when you were a tiny baby.

But what is it from?“, he presses.

From a transcutaneous monitor. It was used to measure the oxygen and carbon dioxide in your body so the doctor could adjust the machine helping you breathe when you were very tiny and wasn’t big enough or strong enough to breathe on your own. Your skin was very sensitive so they had to move the probe around often or it would leave a mark that was shaped like a circle. That is a mark left behind by the monitor.

He thoughtfully traces the silvery circle-shaped scar on his belly. I can tell he is still wondering about it.

Do you want to see what it looked like on your body? I have a picture.

Oh yes!

So I pull out the little photo journal I have that documents his NICU life in pictures and in words.

He regards the picture, carefully tracing the TCM probe on his back just above the tiny diaper that he wore.

Do I have a scar like that on my back too?

No. The one on your belly is the only one.

He shrugs and then begins to read out loud the words I copied from the nurse who took that picture.

I have a lot of scars, don’t I?

You do. Every single scar shows just how strong you are. How amazing you are. How wonderful you are. I love every single scar that is yours.

He smiles and hugs me tight. “I kind of like my scars too!

Out of suffering has emerged the strongest souls; the most massive of characters are seared with scars.

~Khalil Gibran

not missed

At work the other night I find that I have a little bit of time on my hands…

No! Goodness, no it is not that word that is the opposite of fast or busy and it isn’t that word that starts with the letter “q” either.

SSSHHHH!!!!

Nurses do not say such things out loud unless they are naive, newbies, desperate for more hours and time away from bathroom breaks, meal breaks, family time, sleep…or are eager to help move things along for a patient who might have been  maybe laboring all day.

Don’t say those words out loud.

Please.

Trust me in my unit we have plenty to keep us occupied and working hard…very hard…all the time. But the other night I found time on my hands…down time…and with down time we try to catch up. I chose to stock supplies; supplies that when I am slammed with patient care find that I do not have close at hand to help me deliver the kind of patient care that I expect to deliver….

EKG leads…feeding tubes…syringes…kleenex…lancets…heel warmers…gloves…IV tubing…baby wipes…diapers…4x4s…and on and on and on.

I pulled these things (and more) from the stock room with the intent that the next time we get slammed, when I am there, these things will be right where I expect them to be when I need them.

I can be very selfish when I am stocking the patient care areas that I am working in. Then again, I do it for my tiny patients too.

You are welcome tiny patients! Love you beautiful babies!!

So while gathering feeding supplies for gavage feedings because I do a lot of gavage feedings on any given 12 hour shift, I came across this.

Oh you 14 French MIC-Key gastrostomy feeding tube…you were such a HUGE part of my life for such a long time…a HUGE part of my son’s life and his father’s life and his sisters’ lives…until you were replaced by a Bard gastrostomy tube that had to be surgically placed and then, years later, surgically removed. I hated you and I hated the Bard too. Then again, I valued you, grew to rely on you…a lot. It is because of you I often questioned my own ability to care for my child, to nurture him, to feed him. But at the same time I was thankful that you were there poking out of my little boy’s abdominal wall because without you how else would I be able to feed my little boy for so many years?

Oh little 14 French MIC-Key gastrostomy feeding tube, we don’t see you very often here in our NICU but you are here tucked in that drawer in the stock room where we keep all the tube feeding supplies just in case. That is indeed a good thing because what if we did need you at say 0200? There you are, in that drawer. Waiting. Ready.

I close the drawer which you are stored in and sigh. No one needs you tonight or any time soon. Thank goodness. I don’t miss seeing you little 14 French MIC-Key gastrostomy feeding tube. I don’t miss you at all.