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.

J's progress - 25.5 months old

J woke up with a huge smile and kisses today.  Real kisses. He was so proud of himself. He's given them before, but not for a while, and he's only recently learned to pucker. I think he was just excited to see what I'd do. He smothered me with them and then laughed with joy.

Bad news:

I put this first because it's short. He has obstructive sleep apnea. We'll consult with an ENT later this month.

Good news:

It is day two of no projectile vomiting. A week ago I finally broke down and bought emesis bags online. He had been vomiting three to four times a day all summer. They'll probably come in the mail today. Maybe we won't need them much after all.

What has changed? We're not particularly sure. It's week three back on reflex meds, so that helps. Also, we've been more proactive with the inhalers, and we've finally gotten a new filter for his bedroom air filter, so he's breathing better. Plus, we're running out of high calorie formula, so we're using more pureed real food and less formula. Not enough to make the difference, but maybe just enough that things are sitting better on his stomach and moving better through his bowels. There is a correlation between constipation and vomit, so keeping things moving is one of many keys.

Jonathan has also learned the word "burp." (He says "buub" which sounds a lot like "bahbah" -- bottle, or "bah" -- ball, so you have to listen carefully.) In context this is hugely helpful. He now tells us clearly that he'd prefer to not drink anything for a bit while his stomach works on other things. In truth, it has less to do with the word he's saying and more to do with the fact that he's trying to communicate with words. In the past, he'd scream because he didn't want a bottle, we'd have no idea what was bugging him, we'd reintroduce the  bottle or sippy cup thinking he was still hungry, and the mere sight of it would induce gagging, crying, and unless we were very lucky, vomit.  Now he stops, arches his back, says "buub!" and we wait. He believes we'll listen to him, we now know to listen to him, so everyone is a lot more patient with everyone.  The whole household is happier.

(His meds for his acidosis always give him gas bubbles, so this new word is useful at least three times a day.)

He's more curious about things, more talkative, and has that bright look in his eyes that says, "oh yeah, I totally know what's going on here."  Today on the swing I'd say "ready, set" and he'd answer "GOOOO!" before I'd push him. He loves people more than just about anything, but balls and music are second best.

He's 18.75 pounds. Almost 19. That's a gain of nearly three pounds this summer -- more than three times what he gained from October until May of last year.

We're working now on building strength. He can climb up and down stairs, but his right leg is weak. We're trying to get him to lead with the weak leg in order to strengthen it. When he stands, he locks the right leg, which isn't good long term. He hasn't added to his record of last month of five steps yet, but maybe when his new AFOs (ankle foot orthotics) come in he'll be able to make strides with his strides.

-------------------------------------------

And again, J has taught me just how much small strides can lead to greater things. Maybe I'll run a half marathon tomorrow. If I do, I'll be remembering him around mile eight or nine, when things get hot and my feet start to blister. I'll remember that hard things are still possible and still worth doing. I'll remember that even if our bodies have betrayed us, often we can reshape and strengthen them. I won't ever be an athlete and J won't ever be a goalie (his vision being what it is). In all likelihood, I'll never be able to finish a 5k in under a half hour, and J won't look like a two year old until he's three.  But just as with J, I can always grow, too. I'll stop comparing myself to others and instead just look at that next step. 

Okay, let's be honest, J gets distracted. Half way up the stairs he stops and turns around to see how far he's come. So he doesn't always look at that next step.

But there's something to looking behind, too. To seeing how far we've come.

Keep on growing, baby J. You've come a long long  way.

RTA update

Me returning a call: Hello! How ARE you?
Man: Good. You?
Me: Doing fine. ... wait, is this Steve?
Man: Who?
Me: Steve?
Man: No. This is Alex.
Me: (wracking my brain for any Alex I know) Oh... um... I think I got the wrong number.
Man: Dr. Alex
Me: OH!!! Jonathan's nephrologist!  Sorry. I recognized the number and thought it was my husband. ... He just got a new job and I thought this was his work phone.
Dr. Alex: I wondered why you were so excited to be hearing from me. I just sent you an email, too. Wanted to let you know Jonathan's renal panel looked great. His HC03 is up to 26. So keep the dosage the same.
Me: That's exciting, too. ... Sorry about that, again.

I need to program Steve's new work number into my phone.

Embarrassing conversation aside, I was excited to hear from Dr. Alex. Maybe not as excited as if it were Steve, but who can blame me?

There's a reason I recognized Dr. Alex's number (that's not his real name, but you probably already figured that one out). We've chatted a lot over the past month. And truth be told, I am happier and happier to hear from him. He's had to change Jonathan's dose of renal medication once, but since then, my son has turned into one thriving little man.

He's only gained a pound since we started treatment for his renal tubular acidosis a month and a half ago but he's gained so much else that we're bouncing from excitement.  And considering he couldn't gain even a pound all winter long, we're quite happy with a pound in a month and a half.

Things gained:
Energy
Regular BMs
Height
Alertness
Energy
Talking
Walking
Energy

He's bouncing off the walls. He's so much more interested in learning things. He's not walking around in a tired stupor any more. It's not surprising that he hasn't gained as much weight as we'd hoped -- he's burning off all those correctly metabolized calories in learning to do all the things he only wished he could do before.

Continued struggles:
Gag reflex. It's too strong. That boy gags too well. I continue to use the techniques we learned in feeding therapy to help him be willing to experience new textures and foods, but it's a struggle. Crying will also induce the gag reflex, so an accidental bonk of the head often means a misplaced lunch on the floor. We are so glad we bought a home with wood floors.

Chronic lung disease / BPD. We don't talk about this often, but it's still there. It's the middle of the summer, so we didn't expect to see a ton of it, but it's also the middle of the summer, so his pulminologist thought we might want to try a half dose of his steroid.

The Vision of Trees - ROP

This post first appeared in Catapult Magazine and is a raw look at how I processed JAM's potential blindness when he was diagnosed with one of the worst versions of retinopathy of prematurity, "AP-ROP" or "Rush Disease," and I found myself coming to terms with the knowledge that, even with laser eye surgery, he would never have normal vision and may never see more than shadows. 

 

Emerald, orange and yellow flashed at crisp sunlight, shading my windshield of dead bugs. I arched my neck to look past the filth. Leaves had never been those colors before. I thought I knew what color was, but this display was different. Never in the history of the world have trees given such delicious colors. On this day the trees had decided to become deeper, more majestic, merged together to make the most beautiful bouquet, each at perfect peak.

 

Our crabapple tree, just days before his birth.

I knew why they’d done this. It was for me, in celebration and in mourning. They’d heard his news. He’d make it to his first birthday. That was almost certain. The worst was behind us. But his eyes may never take in an autumnal feast. They had called it one of the worst forms of retinopathy of prematurity. Fast progressing.  They showed me the pictures, thick veins twisting to and fro, pulling at the thin retinas, stuck beneath a protein cloud that prevented veins from growing into the sunlight. He may soon be blind.

 

So the trees chose that day, as I drove home from the hospital with this news, to give me their fruits — a gift and a sacrifice.

The wind blew hard in the weeks that came. I didn’t mind at first. It took away the stifling summer, with its long days and no answers. It threw aside the canopy of leaves, the curtain that hid the true frame of things, giving cool clarity.

 

The trees showed off their shape. Some grew straight and strong. Their roots were secure. Nearly each branch would gain another set of leaves to join in next year’s autumnal feast.

 

It was the crab apples that darkened my vision. They would pull at my eyes as I drove so that I could not look away. Gnarly, thick, with roots that yanked at the retina of the ground like the vessels in my son’s eyes, unable to reach further into the sky.  The branches on the bottom had died off, shaded by the new growth that would not grow high enough, would not let enough sunlight through.

 

I wanted his eyes to be maples, tall and thin, stable and continually reaching for the edge of their world. Maples could see. Apples were full of retinopathy of prematurity, and that made it impossible to stretch high enough.

 

Everywhere vessels called branches flashed to my retina images of his eyes. I wanted the canopy of colors back again. Why hadn’t I minded on the day when the leaf curtain left the sky? I wanted it back, to shield and clothe the tree frames, to help me forget blindness, darkness, to help me see light again. A tree is a tree, always. I tried to convince myself it didn’t matter its frame. Please, give me back light and color and beauty. Show me your leaves, not gnarly death. Leaves give hope.

 

I parked my car.  Time for footsteps, for movement forward even if this is not the road I’d have chosen. Push on, feet heavy, anticipating a long, dark winter. At that moment of cold reality, and without warning, the leaves beneath me gave way. With their final cry, they gave a gift.

 

Crunch.

 

Crunch — kick — crunch.

 

Sunlight hit my forehead, warming my face. Dark winter was not yet here.

 

I looked down again, with purpose, looking for the crunchiest leaves.

 

Crunch, crunch, crunch.

 

The oak trees might be brown and ugly, but they won every crunching competition. The feeling under my feet was satisfying, the heels on my shoes were best for crunching. I liked the small almond apple leaves for the kick, the way they gathered close and exploded into the air.

 

The texture of the world took shape. And the texture of the world was good.

 

The gift came from both the short and tall in the woods and on garden paths. The gift required no light, no color, yet it was still beautiful.

 

Without light, there is still beauty. In beauty, there is vision. My vision was made new.

 

I saw a child, healthy and four, crunching oak leaves in his fists, laughing and throwing them into the unreachable and unseeable sky, basking in warm sunlight, unaware that his eyes were like the crab apple tree that threw speckles of cool on his forehead.

 

He was going to live. And life would be good. I would make it so. I would pass to him the gifts of the trees.

 

Comparing

Last year not-smiling

Parenting rule #2:  Don't compare. Just don't. Unless you're comparing your own child to themselves.

Granted, no parent actually FOLLOWS this rule, but we know we should. And that is at least something.

JAM weighs a hefty 18 lbs 4 oz at two years old. We're not thrilled because that's a horrible gain in the last year. (See? I'm only comparing him to himself! What a good parent I am.) I'm not concerned any more, though, since the amazing nephrologist just recently figured out all that "failure to thrive" stuff.

This year not-smiling (see mom, I grew THIS much)

There are a few plus sides to being small. T-shirts last longer.The pictures below are from his first birthday AND his second birthday -- same shirt. And, at least he's behaving developmentally appropriately (he's advanced even) for his appearance.  He looks like about a 12 month old now, don't you think? That's what our neighbor guessed when we told her it was his birthday today.

Last year's smiles: part 1

He deserves an extra year. At birth he was 4 months behind his peers. Then he had six surgeries before discharge. I figure every surgery puts me around a month behind -- so there's another six months. Well, we'll say five, since one was "merely" eye surgery, and he's a kid, so he heals faster than us adults. Add two more major surgeries before he was one, each requiring about a month of healing, and you've got a total of eleven months of disadvantaged environments in his first twelve months of life. Ugh. Math only leaves him one good month in that first year. (I'm guessing that was the month of May.)

Okay, so that's rough. Then add to that that in his second year of life he spent most of the time undernourished and exhausted, with his body stealing from his muscles and bones to keep his pH closer to balanced -- and you'd expect to see a kid who is just barely hanging in there.

But that's not the kid we see. (Anymore.) Our child is doing so remarkably well considering it all. There were moments in the last few months where we were really really concerned, where I cried tears of frustration and hurt at the small tired baby that lay staring at the light because his energy reserves were gone. But then, even then,  he'd bounce back up again, moments later, and trot around the room on all fours, his head high like he was showing off for the world. His spirit was not crushed. Perhaps this babe has figured out the secret of how to live on love alone.

Next year, bud, next year we'll add good-old-fashion nutrition to all that love friends and family have poured on you. Next year is going to be amazing. You'll finally outgrow that shirt.

Last year's smiles: part 2

This year's fuzzy smiles

Last year: awkward pose

This year: awkward pose part 1

This year: awkward pose part 2

Bonus picture. (This year.) I love this kid.

Happy Birthday, JAM

Happy Birthday, little JAM man!

We don't have anything as cool planned for your second birthday as we did for your first, but on this day, no matter the year, we remember the wonderful gift that is you and the provisions that carried you through.

Your first year was the year of survival. You had many surgeries and brushes with death.
Your second year was a year of discovery in the midst of medical mysteries.
Those mysteries have now been solved.
Let's have your third year be a year of thriving. A year of normal toddler-hood.

You seem to agree. Let's be normal. You started today with a normal terrible-two temper-tantrum.

I'll take the temper-tantrums as a good thing. This is a new phenomenon for you, my normally laid-back child, but you've discovered you have a will, and that you can't figure out how to bend the world to this will of yours. I don't blame you for being frustrated. You have preferences, and while your mouth still won't say "no, mother, I'm teething now, so I'd really prefer the bottle to the sippy cup. And could I have water instead of formula to start off with, please?" your brain knows that this is what you want.  We're going to figure this thing out, babe. This year will be remarkable.

Thanks for sticking around.

Sweet. Presents.

That was it mom? Just a shirt?
(This one is 12-18 mos and way too big for him. I'm thinking
of putting last year's green shirt on him again for pictures later today.)

JAMmin! Drumming is one of his favorite things to do.

Yep, I'm TWO!

He gained a pound!

Only two weeks into our fight against the acidosis monster (otherwise known as "Renal Tubular Acidosis") and already we are starting to see some HUGE gains.

As in a pound.

As in more than he gained between November and May combined.

All in two weeks.

This momma is really really happy.

Tomorrow my baby turns two, and he is finally over 18 lbs. 4 ounces over, to be exact.

Take THAT you nasty acidosis monster,  you. You can't hold JAM back ANY MORE. We've found your cryptonite, and it's only a little more medicinal than baking soda. Ha.

(Sigh of bliss.)

Say goodbye, failure to thrive. Because THIS baby? This baby is going to THRIVE now. Just wait and see what this next year will hold!

My Vocation Revealed

I used to think my career path looked scattered, unorganized, pulled. Now I realize that each job, each skill learned has brought me here, to my new vocation.

Vocation: a strong desire to spend your life doing a certain kind of work -Merriam-Webster

Last month I received my last paycheck. It may be years or decades before I earn another. My new job is one that won’t pay, and one I never wanted.

I tried being a stay-at-home parent once before, and it didn’t fit. The wool was too itchy, the expectations too high, and my coffee always too hot or too cold. I found a job that was fulfilling and meaningful, my children thrived in daycare, and I cherished my time with them more. It seemed clear that I was a better parent when I was a working parent.

Then daycare didn't work for our youngest, "JAM." I gave up the job I loved out of obedience and need. In an unexpected breath of grace I found I fit easily into the new role. In the end it wasn't that I was a better parent as a working parent; I was a better person when I followed God's plan and direction, no matter how much or little sense it all made. That journey brought me here.

My first job was in a group home for people with disabilities. I discovered under it all I was an intellectual snob that believed that everyone should be "best" at something. Fastest, smartest, skinniest, funniest. I'd been searching for this -est part of me, and these clients forced me to stop. As we became friends, I learned that they were -est only at being themselves, and that was enough. These were the friends that we had in mind when we told the doctors "resuscitate our son." 

Since then I’ve worked as a teacher and in  administration and event planning. The skills in all these jobs touch my children’s lives today. As a teacher I practiced putting myself in the learner's shoes in order to help the learner reach toward the next step. This skill has been essential as I help JAM overcome his PVL (brain issues). As an event planner I needed to know how things worked and keep everything organized and functioning smoothly. I use these skills daily now as I coordinate half a dozen specialists, plus therapists, teachers, medical equipment, and insurance bills -- all in addition to coordinating the schedules of two older children and normal toddler things like diapers and sippy cups, story times and changes of clothes. Even my training as an English language teacher is coming in handy as I work with a speech therapist to teach JAM his first language.

From tutoring and teaching to paying bills and coordinating caterers -- I have had half a dozen jobs in the past dozen years. All of those skills will be used as I move into being "just" a stay at home mom.

I used to be afraid of going back to being a SAHM, but those fears have been squelched. At the core of it all I've found that I thrive when I am following God's plan, wherever that may take me. In addition, I thrive when learning, and I have learned a lot since JAM was born. I spent today researching acidosis. I am in awe of how our bodies compensate for deficiencies. Tonight I witnessed E's kind heart and K's incorrigible optimism. And in the midst of writing this blog post, I've discovered that JAM is soothed to sleep best by harpsichord. I am fascinated.

I am doing more than just surviving my job. I have found my vocation - in the place I least expected and for unbeatable pay.

This post is part of the differentdream link share. Read and be inspired by articles written by parents of special needs children. Visit here: http://www.differentdream.com/2014/07/dream-team-link-share-17/

Week one on RTA meds - still pinching myself.

I am still pinching myself that we have a diagnosis. I am so grateful that the reason for JAM's failure to thrive has been discovered.  It will take a while for his system to regulate and stabilize, but we are already starting to see some benefits. Given that RTA could be life threatening or cause rickets, we are so very happy that this kidney disease was diagnosed so early (relatively speaking) in his life.

Down sides:

While we are in the early stages of this, he will have to get blood tests regularly to see what the meds are doing to his Ph levels. First test comes next week. Then it's every few weeks until he's at a good level, then at least every three months for the first year on meds.  That said, it's better than if he had diabetes, so all told, not too bad. Too bad that he is a very very difficult poke. In order to get a good draw on the first try, we have to drive to the children's hospital 45 minutes away. Even then, they struggle to get blood on the first try. [Last time we had a blood draw the phlebotomist took one look at J, remembered him from the previous draw, and immediately called for backup.]

While I thought solving his weight gain issues would gain us a free pass to take out his g-tube finally (he hasn't really needed it for over six months), the nephrologist recommends we keep it in, at least until we are sure he'll take the drug orally. He mentioned that he knew a kid who had a g-tube given to him specifically for RTA -- he wouldn't tolerate the drug orally, and they had to give it to him somehow, so they put him through surgery, gave him a g-tube, and administered the drug through the g-tube. I thought this was extreme until I learned how much medicine J has to take daily. It's only one medicine, but he gets a lot of it three times a day, at least for now. There's no sneaking it in to one swallow, because too much has to be given for that. We haven't even tried to give it orally yet. It's super sweet (smelling at least), and so I could see how this salt-loving boy would utterly reject it, even if we tried to hide it in applesauce or some other yummy treat. We'll wait until he's a bit better at eating and until things are stable with his Ph levels before we try giving him the drug orally. And then we'll wait several months more before we remove his feeding tube. (Sigh.) It's okay, it's kind of nice to have as a back-up.

How he's tolerating it:

At first the drug seemed to make him nauseous. Either that or he had a headache (a distinct possibility since E and I were both fighting a bug that gave us a huge headache). So maybe it wasn't the drug. But he wasn't feeling that great.

Now he's doing a lot better.  He's still more irritable than normal, but he's turning a corner. We're only five days in, but we're starting to see small changes.

Up sides:

The biggest has been in his gut. [Okay, TMI warning here -- you may want to skip this paragraph.] He would never ever have normal bowel movements. He'd go to both extremes -- sometimes at the same time. Theoretically (from an RTA standpoint) this might be because muscle weakness impacts bowel function, as your bowels are one big muscle. Coordinating that muscle when you are weak is hard. Plus, he has extra scarring from his NEC (bowel surgery). This issue has resolved itself already. It's bizarre. We kept waiting for constipation to hit again, but it hasn't. So, we know his muscles are  now working better. He's stronger.  Maybe we can stop being followed by GI in the next year.

His breathing seems slightly improved. His energy level as well. Not enough to know for sure that it's better, but he's going in the right direction.

All in all, I'm thrilled.

I still haven't found any good resources for RTA. And I have no idea why J has it. A friend says you can get it from sniffing too much glue (there's some truth to this). Not sure where Jonathan's gotten all that glue to sniff, maybe he's been hiding under his crib mattress.

Update on Failure to Thrive - RTA.

Remember this post from about a month ago?  How I was wishing I could change the Ph in my boy's blood and get him to suddenly and magically start gaining weight, stop vomiting, have regular bowel movements, stop having his arms buckle underneath him when crawling, and stop being lethargic?

Well, turns out we can change his Ph.

His blood is too acidic. He has renal tubular acidosis. It's rare. Even among all my doctor and nurse friends I don't know anyone (other than the nephrologist) who knows anyone who has been diagnosed with RTA.

But he has it. And we can do something about it. Finally, an answer.

We are rejoicing.

He isn't tolerating the medicine well yet, but we're hopeful.

Downside: there are lots more blood tests in his future. Poor babe.

Becoming the patient - How being a preemie parent changed my perspective on healthcare.

Being a preemie parent -- or the parent of any medically fragile, medically complex child -- changes your perspective on things.

As of yesterday morning we'd been to the ER (emergency room) a total of three times this summer. Twice for J's severe illnesses, once for his older sister's broken arm.  That's more than the previous three years combined.

Yesterday we added one more ER visit and I became the patient. It was a dumb injury. I tripped on an uneven sidewalk. I was carrying JAM. I protected his head and body with my arms, so I didn't have anything to stop my fall. My knee fell on another piece of uneven concrete that acted like a knife, cutting a 5 cm gap in my knee. I knew immediately that J was scared and I was more badly injured than just a scrape I could walk off. Thankfully, my brother had just turned the corner down the same street and saw us fall. He acted as a first responder and took me to the ER, my sister-in-law took the other kids home, including an utterly unharmed Jonathan. I did my job well. My baby was safe. (I will wear my scar as a badge of honor.)

The admitting nurse asked to look at the injury. I lifted the towel. She looked shocked and immediately covered up my wound again. Yes, I know, that there is nearly entirely exposed kneecap. That's how I knew I needed to go to the ER. That one isn't going to heal itself. She told me it was one of the worst lacerations she'd seen. I thought "no, this isn't THAT bad. Looks pretty clean to me. Besides, I'm not in any danger here. It just hurts."

Yep, being a preemie parent changed me. I'm a bit tougher. After all, it's a knee. It's not NEC.

Ways being a preemie parent changed my experience in the ER:

1. They asked me my date of birth at registration. I gave Jonathan's DoB and then realized I was older than two.

2. It ain't a "medical emergency" unless you need to be sedated or put on oxygen. This here was just an inconvenience.

3. I automatically interpret numbers on the machines, it's second nature now. "Oh good. My blood pressure is pretty close to normal and my blood oxygen only a little lower than usual, but still in a normal range, so I am actually handling this fall pretty well. Guess I'm not going into much shock."

4. I understand the medical wards better. I knew why they got me in fast - I was the scariest one in the waiting room - and I suspected that if the child with burns had come in ten seconds earlier, my wait would have been about eight minutes longer. And I wouldn't have minded a bit.

5. In general I have a lot more patience and am a lot less demanding -- I know what to expect now.  They're not going to give me sprite until they see if I need surgery, so there's no sense in asking until I'm no longer NPO.

6. At the same time, I also know when I need to ask questions and how to answer their questions.  I feel like I'm part of the medical team now, from the moment I walk in. Being dramatic doesn't do anyone good. Unless you are afraid you're bleeding out on the sidewalk with only your infant around. Then, by all means, one should scream as loud as possible (and I did). But once they're attending to you? Keep to the facts and be honest about how you're feeling.

7. I notice cleanliness. Yes, nurses, I saw when you didn't put on hand sanitizer as you walked in the room. I also notice when nurses put on gloves and then rummage around opening and shutting eight different drawers trying to get the bandage for my hand ready. Yes, I know you're protecting yourself -- but if you'd first gotten out the bandage and set it aside and THEN put on the gloves, you'd be helping protect ME, too. I don't think I would have noticed before. Yes, I know this isn't a sterile procedure, but we're in the ER, and there are lots of germs around. And this here is an open wound. (They were a lot more careful and absolutely sterile when dealing with my knee -- as that was a surgery and not just a band-aid.)

8. I've seen a lot of medical procedures over the last two years. And the short of it is, I'm used to blood and needles. As such, I thought it was kinda fun to watch myself get stitched up with two layers of stitches. It's all super interesting, once you get over the shock.

The one thing that hasn't changed: I still make really bad jokes when I'm in pain. I inherited that from my father.

"This wound is 5 cm."
"Oh, good, I'm half way to having this baby then."

...

Really?  I really thought THAT was an appropriate response?

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For those of you with medically complex kids: how has parenting changed your perspective on medicine and doctor's offices?

Thriving - of growing a garden and growing a child

Exploring sand

J is happy. He loves his sisters, books, balls and sandboxes. He's growing taller and looks more like a toddler. He is getting healthy after a round of a tummy bug and has snapped back into being his normal toddler self.

But his energy level is and always has been low. He used to quake when he woke up from low blood sugar. He has finally -- after eight months of trying -- gained a pound. But one pound in eight months isn't so great for a one year old. Sometimes he'll be crawling and his arms will buckle beneath him. He's weak.

They say this is "failure to thrive," and I did and do hate that term. But maybe they're right.

I had a garden last year. It was on clay, alkaline soil. I tried to plant blueberries, and if you have read this blog from the beginning, you remember what a disaster that was. No matter what I would do, my garden would not thrive.

Check out my garden this year.

I've never been able to grow squash. My kale has always been wimpy. Tomatoes and peas worked, but barely. And I've never attempted kohlrabi, knowing it wouldn't work in my shady, clay soil.

So what changed?

I moved. I got a new garden, one with sandy-to-loamy soil. One where plants can thrive and the Ph levels are perfect (or easily amendable).

And suddenly plants that would die or barely hang on before started growing like crazy.  I love my new garden.




















Jonathan got a new early intervention teacher. She met him for the first time last week. Her sage advice to me? We've got to get him gaining weight. If he doesn't have the energy level to sustain a normal toddler lifestyle, he'll continue to fall behind on gross motor skills and overall development.

No, duh.

Least inspirational speech ever.

He loves to eat.

I wish I could get new, better soil for Jonathan. I wish there were a way that he would suddenly be able to start to thrive, to grow, to gain weight.  I want answers because I want him to become all that he can be.

I learned early on that planting peppers outside before the last frost was a recipe for short, small, probably dead pepper plants. Wait until it's warmer, until they can grow well.  Otherwise your crop will be decimated.

Jonathan didn't wait until it was time. We're so glad he hung on, but I had hoped that by now the
"thriving" part of toddlerhood would have started.

So, I'm praying hard for a diagnosis. We've checked most everything. We've spent the last eight months searching for answers and we've nearly reached the end of the line. Our last hope (before we diagnose him with "wimpy white boy syndrome" - in other words, "sorry, lady, we can't do anything for your son") is acidosis.  That is to say, we hope all of this -- his fast breathing, his failure to thrive, his low energy level, chronic constipation, and the presence of kidney stones a year ago -- we hope all of this is because his Ph levels are off. If he has renal tubular acidosis, everything that is confusing about J (other than his low zinc levels) could be explained by this. If this is it, it means his kidneys aren't ridding the body of acid like they should, and it's throwing his system for a loop.


And like my new soil, acidosis is easily amended. He'd take a supplement. It would help change the ph of his body. That's it. And then he'd start to thrive. I nearly cry thinking about it. How amazing, how wonderful. If this were it?  If this were it, it would be an answer to prayer.

The nephrologist has run one set of tests. It came back confusing and inconclusive because he was still battling a tummy bug and was dehydrated.  So we're running another set of tests in a week.

Please, please be RTA.

Otherwise, we'll just be glad you hung on, and we won't expect you to produce as much as your other pepper peers.


P.S. As J's dad is quick to point out, there is one JAM oddity that cannot be explained by acidosis. That is, his PURE AWESOMENESS. Seriously, this kid is cute!

"The Gift of Presence"

Recently this article was published. I go deep here, hit the spiritual elements of our journey, and land on one solid truth: sometimes what we need more than anything else is someone to walk with us in pain and joy, in hurt and triumph.  I learned this through three simple words, spoken in to my soul. I was still pregnant, crying out to God, and more than anything else I wanted to hear, "this baby will live" or "don't worry." But I didn't hear that. Instead, my soul's ears heard a steadying and merciful, "I am here."

If you want to read more, the article, "The Gift of Presence" is here (published by Banner magazine).

You can also read more about elements of the story as published in the article in these posts from this blog:

• About crying out & giving over, when night fell
• Spiritual support on the cusp of viability
• About giving him his name, Jonathan
• Heart surgery
• Gut surgery
• Surgery just before due date
• Coming home

As I read through this article today my first thought was "ugh! a typo!"
And then I got feedback from friends, positive at that, and I thought perhaps I should re-read it.  A second reading reminded me just how blessed and surrounded we were. We were exhausted. I soaked up every ounce of those blessings and rang them out on Jonathan and then greedily looked for more blessings to soak in. Steve plodded on, focusing on the next step and acting as a strong pole for me to lean on when I crumbled, and J -- JAM knew no different. This is how life had always been. We needed and coveted your prayers and gifts, and sometimes we were sure we were completely burned out, but somehow we were sustained. Thank you. Thank you so much. Two years out almost, and it is still hard to remember, hard to believe how our world so quickly changed. But in it all, we were supported. Thanks.

Happy Birthday Virginia Apgar.

If I could have tea with anyone from the 20th century, I'd pick Virginia Apgar. Analytical and compassionate, she is my hero.

I discovered Virginia Apgar when I was sitting in on a medically themed Adventures in Ideas seminar at the University of North Carolina seven or eight years ago. In so many ways she paved the foundation for neonatal and maternal fetal medicine practices today. And she did so in an era when female medical doctors were uncommon. I wish I'd known her.

In many ways, thanks to her work, my son lives.

She saved babies with numbers.  For more on her work and my absolute adoration for her, see this recent post on Hand to Hold's blog.

Happy Birthday, Virginia Apgar. Born 105 years ago tomorrow.

No GI answers yet - but glad for summer

Jonathan is now back to his October weight. That's a loss of half a pound more. He's been pretty sick (including temps so high he ended up in the ER last weekend) so this explains some of it, but we were hoping for answers now.  No weight gain in eight months is scary in a one year old.

JAM continues to grow taller and looks more and more like a little boy every day, but he is still stuck at an easy-to-toss 15 to 16 pounds. It makes Steve's nightly romp with the kids easy and fun, but it has cause me to gain worry weight --the weight that he should have gained by now plus some.  A new gym membership and new FANTASTIC running group in town should help with both the worry and the weight on my end, but neither get to the root of JAM's sticky problems.

We had hoped that the procedure with GI would answer all our questions. It didn't. No poor absorption issues spotted. Nothing.

So we are back to confused.

In other news, he has perfected his hand clapping and has stood for up to five seconds on his own. He has even taken his first step - although it was more like a graceful fall than a step. He might just be walking by two!

And finally, I ended my day job last week. This led to a slight crisis of identity. This week I woke up to a dream where I'd just graduated from college but had no job and no idea what I wanted to do with my future. I hadn't even applied to grad school, but I thought to myself that, since I couldn't figure out what else to do with my life, maybe that's what I should be doing.

Thankfully the morning light reminded me that my job was set before me, and it was a good and worthwhile position. I even got a training manual from his new speech therapist in our new town later that same morning. She says that since he's entering the program late, I need to read chapters one through six by next Wednesday. And just like that, I'm back to school! Training how to be an advocate and teacher for JAM.

By the way, my office view couldn't be better. I get to be outside whenever the weather allows, and I can work from a sunny window inside. Plus, there's no dress code, and my solo client is one of the easiest going, cutest people in the world.  I'm blessed.  I just hope I can also bless him.

Lifelong 'disability' - PVL

This is a hard post to write, so like most hard posts, I've put it off for a good two or three weeks, mulling over whether or not I wanted to make this public and how. But sometimes it's the hardest things that are most important to put out there.

Last month a brain scan showed that our son would not outgrow his prematurity by age two. My response surprised me. We were not shocked. We took it the same way we'd take hearing he had an ear infection or strep. Perhaps because we realized that we already knew, and he has been receiving therapy for this for over a year without a name in hand. A full week later the implications set in, the finality of it all, and it took me another week to process this fully. In the end, though, my stomach has settled and my son is exactly the same person he was before the diagnosis.

To be fair, for the most part, the news came as a blessing. The MRI of his brain showed he did not have hydrocephalus. His ventricles are stable, not growing. He won't need brain surgery for a shunt. The neurosurgeon renamed his brain as exhibiting "mild ventriculomegaly," a close cousin to hydrocephalus, a term which (like "mild hydrocephalus") also means "mildly large ventricles." Doctors seem to give fancy terms for things that could be said in normal ways. Lovely. He suggested a reason for the enlarged ventricles, which was confirmed when we met with the neurologist a few days later.

The neurologist confirmed the neurosurgeon's suspicions and gave Jonathan a new sticker for his charts. His ventriculomegaly is caused by periventricular leukomalacia (PVL). DON'T look it up.  If you ran across this blog looking for info on PVL, then go ahead and look it up. But everyone else, here's what it means for JAM:

Nothing much new. Actually, yes, really. I'm not being sarcastic. It's not degenerative, it's not going to change for the worse over time, and we've already seen the signs of it and know he can overcome it. We just didn't know that it had a term or that we could see a picture of it in his brain.

Since that's not a very satisfactory answer, here's a better explanation. His brain MRI shows that some of his white matter (a part of the central nervous system, a neurotransmitter of sorts) is gone, making room for a larger than usual area for the spinal fluid (that's the ventricles - it's where the spinal fluid hangs out). Perhaps the white matter weakened and disappeared as a result of blood oxygen levels going low (desaturations). That happened a lot in his early life. Or perhaps the PVL is a result of the same intrauterine infection that caused him to be born 17 weeks early. Either way, the grey matter, the thinking part, is unchanged. His central processing unit is still intact.

Rather than raising questions, this explains everything we've observed for over a year. The best part is that now that we know more about the "why" for what we've seen, we can better address his particular issues.

Jonathan is a strong kid who shows none of the classic signs of cerebral palsy** -- no low muscle tone or spasticity. And yet he has had issues with motor development. Sometimes he did fine. He figured out a pincer grasp really early on,  he could feed himself cheerios, and he taught himself how to point and grab his feet and all sorts of things. That said, for some things he can't just do skills that other kids just "get." We had to explicitly teach him how to bend, how to catch himself, how to move his legs to walk and crawl, how to clap and hold a bottle.  For some of these things, we could see he was strong enough and that he wanted to do these things long before he could do them. The motor planning just wasn't there. He couldn't watch-and-repeat. He had to have us retrain his brain.

Think of it like learning to ride a bike or whistle. People show you and tell you how to do it, and yet you can't just do it. It takes practice. We show the brain what we want it to do until one day it just comes. A little more practice and it is perfected. Once the skill is perfected, it stopped taking so much thought. We can just do it. The same is true with JAM.

I've been telling friends for months about how I learned to vibrato or perform complex fingerings on my viola -- about how I knew how to do it, I was strong enough to do it, and yet getting the message from my brain to my fingers took so-much-effort. And then one day, it just all started to click, and after months and months of practice, it started coming more easily. A switch had turned on in my brain. Apparently that switch is in the white brain matter. Within another week, the task could be done without much thought at all. We all rewire. JAM just has to do this for more skills.

In a nut shell, this is what PVL means for Jonathan. It's not every skill that's affected, but it effects some skills unexpectedly, and as he grows and learns new skills, PVL will likely continue to trip him up. He couldn't clap his hands until just last month, at 22 months old. He could pat his legs, but he couldn't translate that to clapping until we worked with him on it for a solid one to two weeks.

Now, to the post title. This new diagnosis means J won't outgrow his prematurity by next month. It means he has a life-long disability as a result of his prematurity. Sort of. Let me explain.

We made a new friend a week before the diagnosis. Her elementary school aged child also has PVL. His response to J's diagnosis echoed our response, "That's so.. AWES... ... I mean, that's really sad."  No, little boy, that IS so awesome. We are not alone. In fact, right in front of us is a thriving boy who is showing us life down the road. His parents call PVL a hidden disability. He still gets help for his PVL, still has some therapy, but you don't know when you meet him that there's anything different about the way his brain works. His parents have no doubt that he will be able to do nearly anything he sets his mind to - it just may take a little more effort than the average person.

All in all, this is fantastic news. No brain surgery needed. We will just work hard,  and we will overcome. This is not a disability, this is him daily proving his ability.

Here's a song that JAM jammed out to today (he is quite a good dancer). It echos my thoughts on all this.

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**Side note on the CP comment above: Cerebral palsy often comes with PVL, the two are not mutually exclusive. A child with PVL is at higher risk for both CP and seizures. My comments here are not meant to confuse. It just appears at this point that J's issues are nearly all PVL related, and not CP related. We doubt he will be diagnosed with CP, but he is still too young to know for sure.