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: boundaries

Originally published October 11, 2010

As parents, we are forever putting up and enforcing boundaries. It’s our job. Our kids believe that we enjoy putting up barriers and roadblocks to hinder them and hold them back in spite of our assurances that we do not enjoy this part of our job…let’s keep it our secret that we enjoy this part…a lot!

But seriously, as parents we encounter boundaries and barriers all the time that are put into place by our own hand, our own words and our own heart. We don’t expect that there will be barriers and boundaries that keep us from our own children. Thrown into the vortex of the NICU or the PICU with a critically ill newborn or child is definitely one of those places where a parent will suddenly find that they have little if no control at all. Even worse, from my own personal experience, is when you, the parent, is also a medical professional. Your child, your baby is critically ill and you have a very good understanding of exactly what is going on. For any parent, it is very easy to bump up against the boundaries of a NICU or PICU setting. For the parent who is also an experienced nurse, a physician, it is almost a given that the barrier between parent and medical professional will be broken down. What else could possibly happen. We, as parents, are frightened to near death seeing our own child in crisis. As pros, we can run through our mind the worst case scenario and outcome with a few blinks of an eye. It’s painfully hard not to try to intervene. We’re parents…we’re good parents. We just have bumped against the barrier that separates us the mom or dad and us the nurse or doctor.

I recall one night in the NICU where I pretty much blew down the barrier between me the mom and me the NICU nurse. Daniel required a ventilator to breathe for him for the first 11 weeks of his life but he often would self extubate knocking loose or even grabbing a hold of and pulling out the breathing tube he needed. What can I say, he was a fighter who drove his care team crazy. This one particular night, I was visiting and helping his nurse bathe and weigh him when…oops, he did it again. As his nurse, respiratory therapist and neonatologist prepared to re-intubate him, there I was standing over him watching him become paler and seeing his little chest caving in exposing every single rib as he struggled with each breath. His care team gently tried to have me step aside but I could not be moved.

“I think he can do this. I think we need to give him a chance.”, I stated as the alarms on his monitor argued loudly otherwise.

It was then that Daniel’s doctor, a colleague and a friend of mine, demanded that I step out of the room now. Before I could argue back, she told me she would come get me when she was done. I stepped out of that room and it suddenly hit me. I crossed that line. I actually crossed it in such a way that I was hindering my own child’s care. My behavior was putting him into jeopardy. Just thinking that brought the flood of hot tears. I ran out of the unit crying.

After what was certainly an eternity, Daniel’s doctor came out to the waiting area to get me. Hugging me, she assured me that Daniel was easily re-intubated and back on the ventilator, pink, stable and now sleeping in his bed. She then faced me colleague to colleague and asked me pointedly if I honestly, as a NICU professional, felt that Daniel was ready to breathe on his own…if he was my patient and not my child, would I have argued with her that way. Of course I knew the answer was no. No, of course I wouldn’t and I knew that. It was then that Daniel’s doctor built up that boundary brick by brick that separated me, the NICU nurse, from me, Daniel’s mom. In order to be the very best mom for my child, I could not, should not, would not be my child’s nurse. It wasn’t easy. It has never been easy as Daniel’s mother or as Zoë’s mother or as Jodie’s mother and certainly as Holly’s and as Hazel’s Mi-Ma. I can’t offer a how-to. All I can offer is that sometimes, for the sake of our children, there are boundaries for us, the parents. Of course we don’t have to like it, we can even push against them if we dare. But just like the ones we build for our children, these boundaries are there for the sake of our children.

surviving outside adventures

Because it is Throwback Thursday I had to dig up an old photo to share…preferably one that won’t embarrass my four adult children. I just love this picture of my brothers and me for so many reasons.

The awesome that was 1970 fashion.

That pose.

Dear gawd, those damn pale, blue, cat’s eye glasses! I know my friend Kale praises me for being a hipster when hipster wasn’t cool by wearing those sweet frames; but trust me, they might have been ultra cool in the early 60s but  in 1970 definitely not. I cringe today every time I see someone wearing such frames…and yes, I’m kind of jealous that someone else pulls that look off and makes it look good.

Those tore up shoes of ours.

My brothers.

Randy.

Billy and his golden curls.

What lies behind that dead end sign on the street we lived on in Ben Avon during the summer of 1970.

Adventure! Grand, dirty adventures! A creek to wade in and swim in and even drink from. We had no clue what flowed from the giant drain pipe a little ways up the creek. We were kids. Kids who, if the sun was shining, were outside until the street lights came on because that was the way that it was.I seriously doubt Mom ever knew what we were doing and we rarely told her.

Who’s going to tell Mom about getting scratched by the raccoon she was playing with in the creek? Certainly not me. I could only imagine the trouble I would get into for that.

Are you going to admit that you literally rolled in poison ivy because your best friend and sister yelled and screamed at you to “STAY AWAY FROM THE POISON IVY!!” and you HAD to prove that you were immune. Randy never did even while scratching at literally his entire inflamed, itchy body.

Adventures behind the dead end sign, down the hill and in the creek were soon replaced with multiple other adventures because we moved…we moved a lot. A LOT…and because if the sun was shining (and sometimes not) outside was where we were until the street lights came on.

There were late night games in a local cemetery running from grave marker to grave marker, hiding and tagging one another.

Nobody tell that we snuck out after dark.

Oh those endless hikes up and down Robinson Road, which as children seemed huge as a child but not so much when I drove there the last time I visited back home. We chased cows in a nearby cow pasture and played in yet another creek…that also had a giant drain pipe emptying into it. Closer to home there was the trash barrel where the trash was burned and where we often played the Will It Burn? game because we had to try and discover what will burn and what will not.

Trees to climb.

Electrified fences to touch.

Circuses to perform complete with a high wire act on the clothes line in the backyard.

Open fields to run through as thunderstorms rolled in.

And so much more.

As children it was all so much fun…but sometimes not. I used to hide my books outside because sometimes I just wanted to sit and read…even if the sun was still shining and it wasn’t time to come in and make dinner or go to the store a mile away walking alone along Route 22 to pick up cigs and milk and tampons for Mom.

Boy was I shocked when I found out what those tampons were for a few years later!

As an adult and a parent I can’t help but sometimes cringe just a little. Okay, cringe a lot…especially about what the hell was likely draining in those creeks we always ended up in and that raccoon.

Still we survived…no rabies for me!

Different times back then we say. Still I often channeled Mom myself chasing the kids outside to play and make happy adventures. My favorite visual is Abby sitting on the curb loudly boo-hooing because “Mommy MADE me go outside and play!”. Still my clowns made their own adventures because it was their childhood and their time, their neighborhood. No creeks or raccoons or cow pastures or highways to walk along to go spend their 50¢ allowance on a small bag filled with penny candy. They were different kids, with different parents, growing up in a different place in a different time.

Still it’s a wonder they survived some of their bigger misadventures…that I know about and DON’T know about. Blame it on the bad parenting. It’s a wonder the four of them have reached adulthood.

I wonder if Hollie thinks that as she watches her children embark on their own great outdoor adventures in a different time and a different place?

Or perhaps she might better understand why mom would make them all go outside and play.

spontaneous moments like these

I have become very bad about capturing life under The Big Top with my camera. I still carry my camera with me practically everywhere I go but more often than not I’m just holding it, or worse, it is sitting in my bag. I was thinking that as I looked at this shot that has been living in my camera for a few days now.

And after berating myself for not taking pictures like I used to, I found myself smiling just a little bit because I DID CAPTURE THIS MOMENT…THIS MOMENT OF AWESOME BETWEEN A DADDY AND A DAUGHTER!!!

If I ever find myself doubting whether or not my children realize just how lucky they are that this man is their Daddy, I just have to look to spontaneous moments like this.

They know!