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.

 

 

 

 

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