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.

the new hunger games

In this news this week…and pissing me off on so many different levels… is the K-E Diet for the blushing bride-to-be who desperately wants to lose 5, 10 or even 20 pounds in just 10 days…no exercise necessary. All you have to do is have a doctor insert a NG tube (naso-gastric tube) into your nose, down your throat, through your esophagus and into your stomach. The tube will be taped securely to your face and attached to a feeding pump that will slowly drip a unique 800 calories/day formula of protein, fats and water.

“It is a hunger-free, effective way of dieting,” Di Pietro said. “Within a few hours and your hunger and appetite go away completely, so patients are actually not hungry at all for the whole 10 days. That’s what is so amazing about this diet.”

Slipping into a wedding gown for a dream wedding is a moment of truth for most brides, but as many say that there is a real fear that it will not quite fit. That’s how Jessica Schnaider says she felt with a June wedding approaching and 10 pounds she says she couldn’t lose. She was desperate for a quick fix.

“I don’t have all of the time on the planet just to focus an hour and a half a day to exercise so I came to the doctor, I saw the diet, and I said, ‘You know what? Why not? Let me try it. So I decided to go ahead and give it a shot,” she said.

I watched this news report sitting next to my son, Daniel…you know, the kid who was fed by feeding tubes the first four years of his life. The kid who could not, would not take food by mouth for those years for so many different reasons…medical and otherwise. The kid who had to learn how to safely chew and swallow food protecting his airway because his left vocal cord is paralyzed. Yeah, THAT KID! He shook his head, while watching this report, and asked why would anyone do that to themselves on purpose…if they didn’t have to. “That is so dumb!”, he declared. And bad mommy that I am, I didn’t chide him for judging someone so harshly…because he is right. He is so very right. Yeah, Jessica Schnaider, my ten year old son thinks you are dumb.

I get the pressure some women put on themselves to achieve an impossible ideal…sort of…kind of. I get the desire for a quick fix that does not involve sensible dieting and exercising…god forbid a bride-to-be actually WORK AND SWEAT to be physically something she really isn’t…something that her fiance did not fall in love with. I do. Or at least I try to imagine what would drive a woman to do this for no other reason than to be skinnier. Okay, fine! I DON’T get it. Not. At. All.

My precious child was fed by an ng tube for most of the 132 days he spent in the NICU. It was only the last three weeks of his NICU stay that he was able, with great difficulty, to take infant formula by a bottle to satisfy his neonatologists who directed his care. But just two months after discharge he abruptly stopped and refused the bottle…completely. There was no other choice but to resume ng feedings…even if his pediatrician thought he was right: that in spite of his extreme premature birth, his chronic lung disease, his reflux and his paralyzed vocal cord there was no reason why an infant would not eat…would starve himself.

This was our reality.

Our life with our beautiful baby boy was all about feeding him by a tube that was placed in his nose that led down to his stomach and was taped securely to his soft cheek.

Strangers would stare, ask what was wrong with our baby and offer all kinds of unsolicited advice and solutions…because it couldn’t be possible that a baby simply would not eat, would starve himself.

Everything I ever believed, learned or did as a mother regarding nutrition and feeding my children I had to let go of with this experience with my child. I had to accept the scrutiny (and sometimes judgments) of professionals and lay-people alike. I had to be the one to re-insert his feeding tube if it was accidentally or purposely dislodged by my baby boy…sometimes daily…and I had to listen to him cry as I did it. Daniel was fed by ng tube until he was 9 months old when his pediatrician and GI specialist reluctantly agreed to our request for a gastrostomy feeding tube. They would only agree because I refused to give continuous 24 hour feedings by ng tube because of the potential for dislodging of the tube and aspiration of feeding into his lungs. It wasn’t until 4 years later that he was finally able to be tube feeding free. Feeding this child still remains a struggle and I imagine it will always be so for him. I hated the feeding tubes…I despised them…but I remain grateful for them because at one point in his life it was the only way to feed him. Having cared for, cried for, prayed for and supported Daniel on this journey I have to wonder like he did…Why? Why would anyone do this to themselves on purpose…just to be skinnier and prettier in a dress that they will wear for but one day?

ABC

Why?