Surviving your child's long hospital stay - Part 1: admit you're worn

I recently read where someone asked how others survived being long-term NICU parents. Five months in the NICU, or any hospital, is too long. We got out sooner than we'd expected, but it was a difficult road.

I remember I was too emotionally exhausted to cry. The bones of my soul were brittle and all my nerves had been exposed so long that they were now raw, not emotionless, but too burned to feel any sensation. And I wasn't the one hooked up to the monitor.

A friend posted this song (below) on my facebook page two months in. I didn't really listen to it for long then, because I didn't want to hear anything that hurt, I wanted the raw nerves to remain numbed. But when I did listen to it, it hit home -- harder than I thought it would.

I know the writer sings of depression, anxiety, and unseen areas of being worn -- but that's not what I heard when I finally clicked the link. Every line seemed to apply either to me or to my son, and often both. I often sang the words metaphorically or spiritually for myself, and sang parallel words for our son. The difference was, when I thought of our son, the words were applied a eerily literal way. His physical body was torn. We were worn.  And somehow admitting it helped.  Here are the words, and here is what my mind saw as I heard them.
------------------------------------------------------------

Keep on breathing, heart heavy
takes too much work. Intubate me.

Worn
(Tenth Avenue North)

I'm tired
I'm worn
My heart is heavy
From the work it takes to keep on breathing

Just before heart surgery. For him the
"frail torn" heart was a literal thing.

I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left

(Chorus) Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

Getting blood just before his second surgery.
"All that's dead inside" for J was his gut. He need it to live, but
it had died off (NEC). Chances of survival slipped to slimmer.
"I know I need to lift my eyes up" but his eyes were swollen shut
from over a pound of water weight (edema) on a two pound frame.
At this point it seemed that life would just not give up.
And it occurred to me that rest might not come in life.
He seemed to have "lost his will to fight"
I told him it would get better, that life could be better than this.
I begged him to hold on. All those around me prayed, because I was
too tired to pray anything beyond a moan.

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Cause I'm worn

I know I need
To lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

(chorus)

Come and flood my eyes
With the most aggressive form
of ROP, we weren't sure he'd see.
But at this point, we finally had hope -
because it looked like he'd healed enough
and he might just live.

And my prayers are wearing thin
I'm worn even before the day begins
I'm worn
I've lost my will to fight
I'm worn
so heaven come and flood my eyes



Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn



I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn.
Yes all that's dead inside will be reborn
Though I'm worn
Yeah I'm worn

Second child's story for her younger brother.

My daughter was writing a story about her brother. It started out pretty normal.
I could tell by the words she was asking me to spell that the story went something like this:

My brother is cute.
He is small.
He is a baby.
He has friends.

Then: "Mom, how do you spell orthotics?"

...

I started laughing out loud, picturing her mentioning all his inanimate "friends."
Orthotics, balls, glasses, bowls (because they sound like "ball" and look like half a ball), cups and cars.

Yes, this is my little  boy.

Toys & Games for CP / PVL kids

It's getting close to Christmas, so let's talk toys. I can't speak for all two year old boys, nor can I speak for all special needs children, but maybe some of my ideas for my child will give you ideas for the kids in your life.

Jonathan has periventricular leukomalacia.  Which on the surface seems to mean he has a mouthful of impressing sounding words and another acronym (PVL) in his medical charts. I explain PVL (in his context only -- not an appropriate explanation for all kids) here. But my one sentence explanation (which, of course, is not at all medically accurate, but gets us close enough for dinner conversation) is that PVL is "a close cousin to cerebral palsy."

Whether from PVL or prematurity, he has a weak core. He has difficulty drawing because he doesn't push down hard enough. We've discovered that a magna doodle is A MUST HAVE. He loves it, because without exerting much force, he still can draw lines.

In addition, he has difficulty letting go of things gently, which makes it difficult to stack things. He's a fantastic kid, but he's weak and clumsy.

So I was DELIGHTED to find this website. (https://www.fatbraintoys.com/special_needs/cerebral_palsy.cfm) I especially covet the Brio Magnetic Building Blocks. I wish Santa hadn't already finished his Christmas shopping for our family.

Another accidental find was "the duck." You see a picture of the duck below. We got J the duck because he hates baths. And we thought if he felt more secure in a bath, he'd like baths better. So far it hasn't worked. BUT -- as long as the duck is not filled with water -- he LOVES the duck. The PT and OT that come to our house love the duck too. J reaches to the side to pick up toys and put them in the duck. He climbs in and out of the duck. In other words, he engages his weak core all over the place.  We found this in the baby bath section of our local grocery store.

In other news, you'll notice in the first picture that J's walker sits under the Christmas tree, "a crutch... carefully preserved" as he has learned to (mostly) walk around the living room without the walker. He still walks better with AFOs, but he'll walk around without the orthotics now as well.  Merry Christmas, and "God bless us, every one." (for my obsession with Tiny Tim, see this article where a doctor convincingly puts forth the case that Tiny Tim, like Little Jon(athan), had renal tubular acidosis.)

P.S. The duck that he holds in his hand? That is the same duck that you see in his pictures from his 12th day of life, below. See how much he's grown?

Preemie Power

Steve and I recently worked to create a superhero story of JAM's life for the annual Hand to Hold Preemie Power contest. I'll post it here when the contest is over (tomorrow) but for now, go and check it out here: http://handtohold.org/donate/events/preemie-power/vote-for-your-favorite/#view/18023/2379885

Do my words seem too light-hearted? Do I seem ignorant of the heroic feats he has suffered? Yes and yes, which is likely why I won't win the contest. But these words are the ones I want to leave him - the way I want him to recreate his preemie past. He can be proud of his scars, and the pain of them need not scar him any longer. Again, read our recreation here.

Post-NICU rollercoaster - A How-To

Hand to Hold just published a piece on surviving the post-NICU rollercoaster.

I wrote it. So if you want to see what advice I'd give on surviving all the medical complexities that can come AFTER the NICU, read here. 

P.S. If I haven't said it before --  I think "NICU rollercoaster" is a terrible term. Read the post to see why, and to see my alternative analogy.

I've started a one-woman campaign to get the nurses to stop saying "It's just all a part of the roller-coaster ride" and get them to be a bit more honest. "Yep, it feels like you're being jerked around. Because you are. It's hard. Just think of it like you're a giant yo-yo. See, isn't that fun? Oh, it's just disorienting and kind of mean? Yeah. That's the NICU."  A bit of honesty. The campaign's not working, but I have had small victories. Like two years ago when I got the nurses to stop using the roller-coaster analogy on me for a good two weeks. I think a wise NICU nurse wrote it in my charts. "NO roller-coaster analogies! TRUST me!"  Ranting here is just frosting on that cake.

The Blessing of Terrible Twos

Tonight, in the midst of a normal two-year-old meltdown (we were feeding him too slowly), the following came out of Steve's mouth:

"Jonathan, it sure would be nice if while you're the SIZE of a ONE year old, you'd ACT like a one year old.  And then, once you're the size of a TWO year old, you'll look around and say, 'well, I'm THREE now, so I'll just act like a three year old.'"

It is very very good to see JAM getting upset about preferences, like the absence of favorite toys, or the fact that "HIS" spot on his parent's lap is occupied by his sister -- and NOT crying just because of pain or exhaustion or hunger.

When he was intubated in the NICU, we longed to hear him cry, to hear him tell us how he felt.

When he was lethargic from failure to thrive, we were glad when he'd cry out and tell us he was upset. It seemed like it took so much for him to complain, and we wanted to be there for him.

So while Steve jokes that it'd be nice if Jonathan would skip the "Terrible Twos," and while sometimes I wish that he'd wait until I'd had at least one cup of coffee before he began his morning meltdown, we are delighted to see him complain.

It's good to have a kid that's healthy and happy enough to have a temper-tantrum. 

It's good for us to cry out and mourn. It's when we do so that we are comforted. 

Preemie Power!!! A Contest for preemies

Reasons I like Hand to Hold's annual photo & essay contest for premature babies:

1. The title. Preemie Power. It speaks volumes to parents of premature babies. Our children had to learn to do things the hard way, and they powered through.

2. The stories. When my son was born, I felt like we were alone, like 23 weekers just didn't make it. That's what the internet seemed to tell me. But Hand to Hold's photo and essay contest tells me a different story. It tells me that there are many many kids out there whose parents were scared to death for the first few weeks and months. It tells me that despite the rough start, those kids made it. And that brings hope. Hope is good.

3. The spin. I admit, I entered this year. It's our first time entering, and I did it in part because I really really looked forward to throwing a superhero spin to my son's NICU experience.

I pretended I was future-him, a junior high kid with an overactive imagination, explaining to all his
comic-book-geek friends what all his scars are about. I made up this elaborate story, complete with super-villians. And then, when I was done, I had his dad throw in a few good touches, and a friend who is better at comics than I help me get the genre right. I was excited with my finished product (which I might post here when voting opens, we'll see).

I realize my essay probably won't win. It is light-hearted and lacks some of the sympathy, tear-inducing language that the judges will likely gravitate toward. It makes fun of some of the scariest NICU diseases out there - but it does so on purpose. I learned something from five months in the NICU and from my chronically ill father. Namely, we need humor. In our darkest times, humor is like a firefly, shining a bit of light. Not enough to read by, but enough to remind us that there's an end to all of this.

And there's something delightful about an escape into fiction, into a world of superheros. In that world, the good guys always win. And that's something I longed for in the NICU. An easy, straight-forward fight.

Pontificating aside, you all should check out the Preemie Power contest for inspirational stories and pictures of other cute kids who beat the odds.

And -- if you are the parent of a preemie -- you should enter this contest. You can win cool stuff. Entries are accepted for the next two weeks, and voting begins mid-October.  CLICK HERE for more information.