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.

sometimes I must be bad

Sometimes you just have to be THAT mom.

Or perhaps when you see the Halloween display in the breakfast foods aisle at your local Safeway you find yourself wanting to relive a small, happy slice of your childhood so you buy them all and bring them home to share.

But only sometimes.

Wait until Christmas. We eat birthday cake for breakfast!

 

word search Wednesdays

What kind of mother would let their kid do his word search spelling/vocabulary homework without offering help?

This kid’s mama!

Some people can look at the jumble of letters in a word search puzzle and see all the words.

:::waving:::

And some people just see nothing but a jumble of letters all mashed together.

Daniel, wave hello.

It’s okay. Except the boy hates Word Search Wednesday. He hates it especially when no one else is around to help like any of his sisters or his dad or even Zelda because he is then forcedforced, I tell you, to check line by line, letter by letter to find the ten words that he is searching for.

Madness! Absolute madness!

It’s unbelievable how long it takes him to complete this homework assignment every Wednesday.

And then his dad walks into The Big Top coming home from work, hugs the boy hello and points at his paper at the very last word that Daniel has been painfully searching for for the last seven minutes.

Well at least he found the other nine all on his own.

 

we are THAT family

Here we are at the Green Valley Mountain Resort for Nationals!

Whoo-hoo!

This place is glorious! Off the strip, in Henderson, away from all the glitz, glamour and depravity and despair that is the Vegas that we love and not love so much, this is the perfect place I am thinking for a Dance Nationals Competition and Convention.

I’ll try to post pictures and a more fair assessment after my favorite dancers have done a little bit of dancing and competing later. For now I am exhausted. Literally. The last 36 hours I have had perhaps a couple hours of sleep choosing instead to kiss my favorite son and see him off to his seaside adventure and annual spoiling thanks to Auntie Toni followed by packing and driving through the night to get here in Las Vegas…er, Henderson.It really seemed like a great idea, driving all night with a 2 year old and a 6 year old crammed into a car loaded with so much dancer stuff. It really was a great idea as everyone, but the driver (me), did get some sleep.along the way.

SOME” being emphasized here.

Oh, and no one judge me for leaving a bag of barf along the roadside somewhere in between the middle of nowhere and Yermo, California.

Nevertheless, we are here…

yeah, we are THAT family. You pretty much KNOW that we are here, no matter where we are, because 6 year old and 2 year old sisters and exhausted mommies.

Perhaps after a good night’s sleep…

Good night!