A 23 weeker success story.

On a board somewhere a mom asked for 23 weeker success stories. For a bit I questioned what constituted "success" since there's no doubt that prematurity will impact my son in small ways for a long time, but then again, if three years ago I could have seen what I see now, I would have cried tears of joy. My son IS a success.

He is still medically complex. We've been chasing down genetic reasons for our son's kidney conditions. We've added a few more symptoms, treated those symptoms, ended up with electrolyte imbalances that have landed us in the ER and hospital (and first ambulance ride) and adjusted medicines again.

We're still working out what's going on, so I'll keep this brief, but it's such a relief (and so odd) that the thing that makes him medically complex is not a result of his severe prematurity.

To go down the list from head to toe:
PVL - that "life long disability" we talked about before -- mild, and last head scan showed ventricle size to be high end of normal instead of mildly enlarged. Doesn't seem to be holding him back much at all. We've now graduated from neurology and neurosurgery. They don't need to see us any more. Ever.
Retinopathy of prematurity - We've got a kid that's quite nearsighted, and becoming more nearsighted with every growth spurt. But his eyes still correct to 20/20 with glasses, so this isn't holding him back. He's at risk for eye issues down the road, but this just means we need to keep up with his eye appointments.
Chronic lung disease - a puff on an inhaler twice a day and occasional administration of albuterol and he's good to go. We see pulminology about once or twice a year tops.
Kidneys - this is the biggy. The list of things wrong with these organs is long, but all seems to stem from one genetic condition. Nephrocalcinosis, mild (and quickly disappearing) hydronephrosis, distal tubular acidosis, polyuria / polydypsia, and associated physical delays from a body that hasn't managed electrolyte imbalances well for three years... yep. This is the one we're still trying to figure out how to control. It's impacted eating (as he gets nauseated now from potassium and sodium levels being off -- and when he was younger it impacted his nursing as he was chronically tachypnic) and that impacts speech. There's a chance hearing has been compromised as well. We'll check that out next week. He's failure to thrive still and needs a g-tube to administer some (but not all) of his food.

And that's it. He walks, he runs, he talks, he has a fantastic sense of humor, and his small stature and glasses just gives him more "OOOOOH!!! He is SOOOO adorable! That kid is so cute!" everywhere we go. It's almost an involuntary response on the college campuses we frequent.

Yes, success. Yes, the long road was worth it. There was a light at the end of the tunnel.

You are enough.

A year ago I wrote these words on the comments section of a blog written by a mom who has gone before me with her own premature son. She re-posted them in this post and I re-found them while surfing the web this evening. I found it to be such a treasure that I thought I'd share.

Folks, we are all enough. Whatever or wherever you are, it is, simply, enough.

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I worked with non-verbal, non-ambulatory adults before having my second trimester baby. They kindly taught me that I was an intellectual snob. If you'd asked me, "Do you think all people have value?" I would have said yes. But secretly, in that part of me I wasn't even aware existed, my actions showed that I believe people had to be smart enough, bright enough, fast enough, good enough. They had to have something that they were best at, and I was constantly measuring myself to see if I was "enough" of anything.

My adult special needs clients quickly became friends. And they weren't fast enough, smart enough, etc. enough at anything. But yet they were enough.

Now when people in my very brainy world (full of philosophers and academics) talk about what it is to be human, I think of these friends. If their definition does not include my friends, it is a false definition, because in so many ways these friends taught me how to be human better than my lofty education ever could.

I know that sounds ideal and romanticized, but the lessons I learned from them were ones that no textbook could have taught me.

The lessons I learned from them were the ones that allowed us to, without hesitating, say "yes, resuscitate our son, because if he can live - even if it's as a non-verbal and non-ambulatory person, if he can even have a chance at life, it is worth it."

And it has been so worth it.

Nominate your NICU hero

Do you know a NICU Hero? Did you ever get a chance to thank that special person?

Hand to Hold and Mead Johnson Nutrition are accepting nominations from April 1 to May 14, 2015, to the Third Annual NICU Heroes Awards. They are inviting parents and caregivers to nominate NICU health care professionals whose compassionate care and dedication helped lessen the emotional toll of a NICU stay and ensured the best outcome for their baby and family. 

There really are so many NICU and bereaved families receive care from neonatal staff who goes above and beyond what is required.

Nominating is easy. Fill out a short form with contact information, your story, hospital name and the name and email of the NICU professional you'd like to nominate. That’s it!  

Nominations will be from April 1 to May 14, 2015 at 5pm CT. All nominees will receive a Certificate of Nomination in recognition of their achievement and a copy of the story you share about the difference they made for your child/ren and family. It's a wonderful way to share your appreciation for their efforts when words hardly seem enough.

A panel of judges, composed of NICU parents and active NICU professionals, will judge the awards and decide on two winners. The two NICU Heroes Award Winners will receive the following:

·  A  a NICU Hero Award certificate and trophy, presented at the winner’s hospital,

·  A $2,500 donation made in their honor to the pediatric healthcare charity of their choice*, and

·  A one-year subscription to the Hand to Hold NICU Resource Library for the winner’s hospital to help educate families new to the NICU

*Some limitations apply

"I know, it's the glasses"

The gradual end of isolation brings with it comments from strangers. Today marked our first timid outing of the year, to attend the Good Friday service. We stuck to the sides and backs of the church and applied hand sanitizer so liberally that one of the ladies watching us smiled the third time we reached for it. Since we are new to the community, people don't know us well. Since Jonathan's been in isolation, people have never really seen him before. He's got a face that's hard to forget.

Mostly we heard, "Oh MY goodness!! He IS    SO   CUTE."

And we responded, "I know, it's the glasses."

But also other comments.
"How old is he?" (gulp)
"Two-and-a-half-but-he's-really-small-for-his-age."

This time followed by, "It's obvious he's REALLY smart." 

To which I of course reply, "Thank you,"

But inside a little knot tangles and untangles as I think:
"Maybe? I'm glad you think so, but I'm not sure I dare to hope... you don't know it, but he's in special education because of his significant delays. That doesn't usually  equate itself to 'really smart.' He may forever be in special education. But I love the way he sees the world, and watching him watch us encourages me and gives me joy. In the end, does it matter? Do labels matter, and even if they do, does THAT label matter? I try so hard to believe labels are nothing compared to the kid. Smart or not, he's still himself, and that's worth so much."

In the end, perhaps the best response is, simply,

"I know. It's the glasses." 

More gratitude - The sun has come out again

Checking out the toys

Y'all know that J is small and developmentally delayed. And y'all know that some of that is from his prematurity, and some is from the long undiagnosed renal tubular acidosis.

Saying he's "developmentally delayed" is harder than admitting he's small. I want to strike it out with all the "BUT"s of his life. "BUT he's trying so hard, BUT he's almost up to 50 words. BUT you wouldn't know it looking at him. BUT he's not THAT behind, BUT it's from the lethargy of undiagnosed RTA." But no BUT will remove the delays from his chart, not yet.

We had an appointment with the developmental pediatrician today to check up on these issues and get an overall sense of progress.

Winter gray lifted and the sun showed through scattered white clouds the full there and home again. I knew the sun would come back again, eventually.

As he played in the waiting room, another girl, just his height, came and joined us. He viewed her with cautious curiosity, and she saw him as an instant friend. They played side-by-side for a while, and then she jumped up on a table that was just above waist height for her. He regarded this with some surprise.

"Learning bad habits, are you, buddy?" I said to J.

"Oh, get down from there! You're teaching him bad habits!" the other mom echoed to her daughter.

"It's okay," I said, "He doesn't have the strength to do that. And, honestly, if he did, I'd be thrilled."

Because the two looked like twins in height and build, the next question was inevitable.

"How old is he?"

"Oh, certainly older than she is." I said, "He's a tiny guy."

She nodded at my redirection and turned to her daughter. But, looking at them side by side, exactly the same height and playing so similarly, curiosity got the best of me, too.

"So, how old is she?" I asked.

"Almost two," her mom beamed.

"Ah!" I said, and then, because it would be rude not to share, "He'll be three in July."

"Wow, he IS itty-bitty!" she replied.

But do you know what? The comment didn't sting. Through that entire interaction, watching him with an almost-two-year-old who was clearly stronger than him but not THAT different, I couldn't help but smile with gratitude. "She's an almost-two-year-old." I thought, "That means he looks like an almost-two-year-old and he acts like an almost-two-year-old. He might look like a two year old before he turns three!" I thought, "And he's getting so strong,"

Our conversation stopped there as the nurse called us in. Jonathan heard her call and walked HIMSELF out of the waiting room (a first), head held high with the confidence of a toddler who knows where he was going. I followed him, still smiling, thinking of the little girl.

In the doctor's office, he paraded himself around the room with glee. I marveled that his rib cage was no longer visible. Four months ago I had to keep him strapped in the stroller to keep his hands off the dirty floor. This time around he never once tried to crawl. He was terribly helpful with his physical, showing the developmental pediatrician how to use the alligator hammer to check his reflexes, and reminding her that a fun looking twirly wire connected the fundoscope to the wall. What a difference from the lethargic stares of last spring. So grateful.

He weighs nearly 9.5 kilos (20.75 lbs) and is 31.25 inches. He's still off (below) all the charts for height and weight by age, and he's sitting right around the 5% weight-for-height ratio, but that's really good compared to a year ago, on all accounts. Our weight goal is 10 kg by April -- a goal that seemed impossible when we set it last fall, but he is getting there. Ah, gratitude.

The developmental pediatrician commented on his muscle tone. "I have written here from our last visit 'low muscle tone in ankle,'" she said, "but he's not any more." She gushed. I'm overjoyed.

The endocrinologist doesn't think J has any hormone related ailments. The GI doctor thinks he looks great and confirmed that NEC was likely the cause of his zinc deficiency, which is an answer to that question. Both specialists have one more follow up appointment (one four months out, one a year out), but in both cases, I think that just may be the last we see of their offices.

We've seen huge gains with the in-home physical and occupational therapists over the last two months (it's hard to believe it's only been that long) and so at today's appointment we arranged for him to switch to inpatient therapy after he's out of isolation. I was reminded that April was just around the corner.

I could climb this -- if I wanted to.

The drive to inpatient therapy is not short, and it'll mean weekly appointments in the Big City, but this boy is taking off -- and it seems for the first time in a long time that "catching up" might just be a thing for him. It will be a while yet, but we are so grateful.

These amazing developments (well, other than the emergence of the sun) brought to you in part by nephrologists, fixers of the kidneys, and by bicitra, the medicine that is correcting J's renal tubular acidosis. This month is national kidney month. We remember you this month, kidneys. Thank you for keeping us alive, giving us energy, and helping us pee -- all year round.

"Do you ever wonder why (your baby was born so soon)?"

Father and son
Copyright held by the author. Do not reproduce without permission.

Last week Steve and I met a retired pastor. In the course of our conversation, he learned about our son’s ridiculously early birth and subsequent struggles.

“When you think about your son, do you ever wonder, WHY?” he asked.

“For every 'why,' there are twenty-three 'thank you's,” Steve responded.

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My answer would have been, “Yes. I often wrestle with the ‘why.’ Why is he alive? Why can he see and hear and speak?  Why can he walk and talk and play and make jokes? Nearly every day I wonder why.”

I'm grateful my life partner is so much more eloquent (and concise!) than I.

To celebrate Steve’s twenty-three “thank-you”s (I never did hear what they were), here are twenty-three of my own.

1. Thank you for life through the night

2. For the opening of eyes and the ability to see

3. For plastic tubes and life-saving bleeps

4. For doctors and nurses

5. For breast milk

6. For the ability to hold one’s child

7. For the sound of a squeak of a cry

8. For kidneys that work

9. For intestines that digest

10. For therapists that understand and care

11. For laughing and smiles

12. For two staples and a scalpel used to heal a broken heart

13. For family and friends that stay away when sick

14. For family and friends that cleaned and cared and cooked when they were well

15. For PICC and central lines so that pokes are no longer needed

16. For brains and bodies that can get stronger – even if it takes hours of therapy

17. For the groaned prayers and lit candles of friends around the world

18. For the good sense to catch oneself when one falls – thanks for the vestibular system

19. For walking, and the tools that makes it possible

20. For talking, even if mumbled words

21. For peace beyond understanding when things are uncertain, and the comfort provided by sympathetic friends

22. For perseverance

23. For a chance

What are your "why"s and your "thank you"s?

This weather has got to go

Let's be honest.

I've not seen the sun for more than moments in two months. My doc was so alarmed by my vitamin D deficiency that she called a prescription dose of it in to the pharmacy. I've gone to events just for the purpose of getting out of the house. I spend hours trying to get the online system from J's hospital to work so that I can read his test results as he struggles with morning lethargy and vomiting.

The system still doesn't work. I even called their support services. Turns out that when I click on labs, it tries to send me all the labs at once. With a kid like him, that's enough to cause any computer to time-out.

I told a doctor friend about the new tests JAM was getting. He immediately understood what the endocrinologists are testing for, so he gave me a new term and enough information for me to start on an online search of medical journals for answers again. I know I shouldn't. I know I should just wait. But information seeking is cathartic for me. It tells me what I know and what I don't yet understand. And I still don't understand JAM. Again we wait in the hard limbo of wanting answers and not wanting THESE answers.

I worry and I cry and I am ready for the cold winter to be over.

I am still glad he's in isolation.

But being a parent of a medically complex child is difficult. JAM is a delight. The cares and worries that surround him are worth it.

We're used to all the other stuff now. now. We don't bat an eyelash when we have to take out an emesis bag after he's stuck with a needle. We aren't afraid of gavaging in public. Getting blood draws is still hard, but we've toughened for the most part. Two times ago, J actually just sat and watched as they drew the blood. A squeak at the needle poke was his only protest. Last time they missed on the first try, so they had to draw blood again, and he wasn't so happy.  As they searched for a second vein, he wailed "AGAAAIN!?" and proceeded with crying and "mommy! ba-ba! [bad, bad]"

It is hard, but it is worth it. We are waiting for answers again, and my soul's as cloudy as our sunless sky.

WAIT

for the sun to come out again.

Storms always come
but they blow away with the wind.

So WAIT,

for the sun is coming again...

                                     -PFR