adjusted for prematurity

Yes, today is World Prematurity Day because one in nine babies every day are born much too soon. Check out #WorldPrematurityDay and you shall see hundreds and hundreds of images of babies who literally can fit into your hands wearing diapers no bigger than a saltine cracker and you shall see pictures of some of those same tiny babies as smiling school aged children or teenagers or even adults. My own social media timelines are flooded with images of some co-workers own preemies and friends and the parents of former patients as we recognize the tiniest but mightiest humans we have ever known not necessarily to celebrate but to remind everyone that in spite of amazing strides in Perinatal and Neonatal medicine and nursing care, prematurity still happens and when it happens the adjustments for prematurity happen.

age 1 month/28 weeks adjusted age; 792 grams/1lb 7oz

I remember having to explain way too many times the adjusted age of Daniel during the first few years of his life. How that adjusted age seemed to annoy some as they would sarcastically question if we were going to be using his adjusted age when he was a grown man.

Perhaps.

Maybe.

What do you care?

As he has grown and developed, knowing Daniel’s adjusted age helped so much in understanding this life living on preemie time. It helped to have just a little more patience when he didn’t walk until age 30 months (26 months adjusted age) or when we struggled so mightily with potty training and eating. But the fact of the matter is that after the magical age of 2 or 3, adjusting does not abruptly end. Experience has taught me that these tiny humans carry so much more than the physical scars of needle pokes, TCM burns, healed incisions and chest tube scars. The bright lights, the loud, clanging alarms, the noxious smells, even certain touches remind them of the trauma they survived that was intended to help them survive. PTSD is readily accepted in adults after hospitalization, why would it not be valid for a tiny infant whose brain isn’t even fully developed and spends weeks, months even in an intensive care setting? Just because they can’t articulate it does not mean that it is not real.

The fact of the matter is for this child, this boy, there is always adjustments for his extreme premature birth. Adjustments in how he learns, how he expresses himself, how he eats, how he grows, how he handles noxious stimuli, how he reacts in stressful situations. Adjustments because he is who he is. We have come to learn and understand so much of who this boy is and what he is passionate about just by adjusting. He’ll never stop being an individual who was born 4 months too soon. He will always be that. Today, and every day, we honor that, we celebrate it, we accept it and, yes, we adjust.

I feared because it was too early, I cried because it was too soon. Yet I underestimated the strength in one as small as you. ~ Unknown

 

 

this week’s photo dump

Feeling lazy…fighting hard against Bill’s nasty cold that he picked up after our trip to Texas that everyone else is succumbing to…thinking that I have way too much to say and not really wanting to say much of anything at all…I’m just going to dump another slide show on y’all.

Yes, I’m running more again and I am thinking seriously about running the Modesto Half…the one I couldn’t run three years ago. No, I still don’t have a place to hang all those race medals from all of those other half marathons that I ran three or four years ago. But I do have these new, sweet compression tights which proved to be AMAZING on their inaugural 5 miler.

Yes, I am THAT mom who sent her son to school with mismatched socks. In my defense, it was Spirit Week and yes, one day was Mismatched Socks Day.

But the next day was NOT Dirty Face and Un-brushed Teeth Day. Twelve is such a wonderful, kind of scummy age. Yes, I am THAT mom who didn’t notice this until he leaned over to kiss me goodbye at the drop-off. I don’t imagine that he will forgive me for the spit bath I gave him anytime soon. That’s okay.

Halloween came the next day and that trauma was soon forgotten. This happens to be the first year where an older sister wasn’t using him as her trick or treat beard…er, I mean volunteering to take him trick or treating which meant even more candy for him and his new neighbor and friend here. Do you know how awesome it is to have a friend your age living on your street and who likes doing the same things you do? Daniel says it is definitely awesome.

And while Daniel was haunting the neighborhood, some sisters were busy making adventures of their own.

Nieces too.

Fallon’s very first flight, from San Francisco to Atlanta.

Where she and Hazel rocked it as the flower girls.

Hard!

Meanwhile, you know that Halloween drinking game everyone was playing this year?

Major fail here under The Big Top.

Two Elsas and one Anna.

A good thing since I voted while passing out candy.

Then there was the end to Daylight Saving for this year. For some of us it was hard…really hard!

As for me, driving home from SFO late tonight, after picking up my daughter, her husband and their wonderful, little flower girls, I am thankful for that extra hour. Yes, as a matter of fact, there is wine in that cup.

 

 

 

play it again: discovering the heart of the ocean

Originally published October 13, 2011

A boy and girl from differing social backgrounds meet during the ill-fated maiden voyage of RMS Titanic…

And now my fifth circus clown discovers Titanic. We are right on schedule too as he is around the same age as his four sisters before him watched this epic story as told by James Cameron. For the girls it was the star-crossed lovers story that lured them in. For Daniel it is the fact that Jack Dawson is cool…oh, and when the ship sank. THAT was really cool!

My favorite part watching it with him?

When he turns to me and states, “You know this really happened, Mom. There really was a Titanic and it is at the bottom of the ocean.” That’s my favorite part, my favorite part each time I have watched it with each of my circus clowns for their very first time.

Of course this means that my Little Man is growing up. Up next in the horizon up ahead, god help me, puberty.

boarding pass for Daniel

Even though it was 6 years ago, I remember Daniel’s first flight as if it was just yesterday.

Magical it was! Perhaps because he is so magical. We never really did leave the Earth, as he imagined. If only.

Then in the news today we learned that there is an opportunity for such an adventure, a journey to Mars!

Daniel got his boarding pass.

Have you?

Get it. Be a part of the journey.

 

the Four Horsemen and other signs of the coming apocalypse

The End Times are coming!

Earthquakes.

Drought.

Wars.

Plagues.

And these two are getting along…

playing together…

happy to see one another…

HUGGING!!!

Prepare your hearts.

Gird your loins.

Pray.

Get your zombie kits ready.

The apocalypse is coming!!!

I do believe that I will see the apocalypse in my lifetime. And when it comes, I’m not repenting for anything I’ve done
~Nate Lowman