"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." 

How a third year of isolation was the best thing that happened to us

If you are a parent of a preemie, especially a micro-preemie, then you know about isolation. This year I've decided that it's the best thing that has happened to us. It took me until now to come to that conclusion, but I've no doubt that it is grand. If you are sinking in winter blues, take heart. It's worth it.

And if you are a JAM fan -- this post acts as an update on his growth and development. Enjoy, and thanks for your part in his story!

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"Go, go!"

Earlier this fall I had it all figured out. Play groups, story times at the library -- I had arranged it so that every other day of the week held an adventure for me and my former preemie. I figured he deserved it. Two winters of isolation for a kid who loved people -- it had been rough. But, now he was two and we were DONE. No more synergist shots. No more isolation. Sure, we'd be careful, we'd wash often, we'd keep him away from sick people as much as possible, but we didn't have to bend our world around his preemie lungs anymore. We could go to church as a family, because he could be in the nursery. We could go to story hour at the library. We could arrange regular play dates. We loved the freedom.

Sure, he got a cold every other week, but kids this age do. No big deal.

Except that for him the colds took forever to go away. He'd barely recover from one before he'd catch the next thing going around.

And by mid-October, all of that illness moved in to his lungs.

He had pneumonia.

We caught it early enough. Armed with antibiotics and inhalers, we kept him out of the hospital. But that was it. His pediatrician put her foot down.

"No more nurseries. No more grocery stores. No more restaurants. No more libraries." Our son was back in isolation. "Just through the RSV season," she said. In our area, that's nearly half the year.

It felt like a death sentence. I wanted to cry. No, no no. This wasn't fair. My son FINALLY had it all together. Eight surgeries his first year left him weak. In his second year, failure to thrive due to undiagnosed acidosis left him extremely lethargic and small.

FINALLY we'd figured it all out. He's on the right meds, he's growing. FINALLY he's acting like a normal toddler, curious and energetic. Finally I had hope that he'd start to catch up. and being around people only helped - because if my son loves anything, it is performing for a crowd.

His doctor was taking away that crowd.

Did I mention that I nearly cried? Because I did. Over and over again, the isolation hit like a lump in my stomach. This wasn't fair.

Jonathan didn't help things. He'd crawl to the sliding door and point out at the cold snow falling and say "Go, go! CAR! Going? Go, peee [please]?"  He'd watch his sisters leave to do fun things, and I could tell that with all his being he wanted to follow.

And again I'd have to tell him we couldn't go, not anywhere. It was too cold to walk, and being in a new town meant that we didn't have any other friends homes to visit. No other places were safe for him.

On Sundays we split squad again, like we'd done for the previous too years, One of us took the girls to church, one stayed home with JAM. And no matter where I ended up, church or home, I fought the tears. It is worse this year, since a new town means a new church. We know nearly no one, and I'm a certified social introvert. I want to know people, but it small talk drains me. Twice a month I meet the same dozen people over again, and still do not remember their names. It is so defeating.

But ISOLATION IS THE BEST THING THAT HAS HAPPENED TO US

First of all, forget RSV. Have you seen the statistics on this year's flu virus? It wants to hit kids like JAM. And SOOO many people around us have gotten this flu. But he's still well. I think because he has not been exposed to the germs. At our last weigh-in with the doctor, I thanked her for isolation for just this reason. (She, in turn, marveled at how many words he had started saying.)

Second, a healthy toddler is a more active and curious toddler. I didn't realize it until he got over his pneumonia, but this kid loves to move. With the lethargy from his acidosis (RTA) last year, I guess I'd just sort of assumed that he was a laid back kid. This fall as he fought off cold after cold, I thought he was ridiculously alert and active compared to before the RTA diagnosis. But (little did I know) - he was still operating at less than 100%. 

Thanks to isolation, my son is healthy, active, and curious. Sure, he still hates it when he is stuck at home, but he is growing by leaps and bounds.

Today proved that to me.

A month ago we had a consult for an in-home physical and occupational therapist. "He can't release things," I explained, "he will only throw them. I know this frustrates him, but he just can't figure out how to put things down gently. He can't do puzzles. He has a hard time sorting shapes. He walks, but he can't stop and just stand unassisted, he won't hold anything in his hands while he walks, and he won't bend over to pick something up" I said. "He can only climb furniture if I put a cushion down so that he can climb half way at a time. He doesn't talk a lot."

The occupational therapist stopped by today. As soon as she walked in, J looked up and said "Chechur!" ["teacher!"] and got a big grin on his face. He'd never met her before, but I told him that a teacher was coming. He had remembered. Immediately he started showing off. (He's figured out that teachers are there so that he can perform for someone.)  He walked around the room over and over again. He STOPPED mid-walk to redirect his steps another direction. He picked up his favorite car and brought it to the windowsill. Reader, this is a big deal. HE WALKED with a toy!

The elephant shape sorter. Photo and sorter by infantino.

When he tired of walking, he climbed up on a chair (no cushion for assistance needed, thank you very much) and took his elephant shape sorter out and started sorting shapes. The OT saw the shape in his hand and said "that's a circle. Look for the circle" and he turned the belly of the elephant past a triangle, a hexagon, and a square until he got to the circle. Then he put the circle in the elephant. That's right, he RELEASED a toy.Then he tipped the nose of the elephant to get the circle back out so he could do it again.

I was floored. He was doing everything we told the therapists he couldn't do.

Not that he's suddenly miraculously on track, he still has a long way to grow, sensory issues to overcome, and a core to strengthen -- but this month has been incredible, unbelievable, fantastic.

And I have no doubt that he would not have gotten here without isolation. Staying well has kept him growing and learning. We have three and a half months to go, and while I'm not excited about the cold snowy days, I am excited to see where he will be when we reemerge with the tulips.

The Runner

If you know me, then you will not be surprised that on an early autumn day a year and a half ago, healing from a c-section scar, I noticed a runner and at first I mourned.

I'm not particularly fit, but I love running. It is a banya for my soul. Each step, each mile has me beating my soles like birch twigs in a sweat house. I am cleansed as toxins housed deep in my heart and head are brought forth and released through tiny pores, flushed down the drain by a refreshing post-run shower. My heart rate regulates, my temper calms, and I can be more the person I wanted to be.

Once I could do it, running became a part of my self-prescribed therapy and a reference point for how far I'd come after being thrust into the life of difficult-to-digest emotions, the life of parenting a severely premature baby.

So look back with me, will you? See a glimpse of the runner that I saw as I drove into the NICU that warm September day. The story has been posted in two parts.
Part one
Part two

In the end the moment reminded me that even when you feel you're treading an unknown and lonely path, often there are footprints of those that went before you, if you take a second glance.

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The full story can be found on differentdream.com. A warm thank you Jolene and the rest of the crew at differentdream.com for wanting to include my story on their blog for parents of special needs children.

Today: my son is a minion

I didn't mean to, but I think today's outfit was the perfect blend of a minion meets a mime.

I've been laughing at this all day. Had to share.

Here is JAM at PT practicing his standing.

Day 11 & 376 of J's life: Here I raise my ebenezer

A year ago today I wrote the following on our care page for Jonathan:

July 28, 2012
The good: It looks like J will be able to complete the drug therapy [to close the PDA] today.  A look at his heart tomorrow will tell us if it worked. If all goes well, he will be able to resume feedings tomorrow.

The not so good: He's depending more and more on the machine to breath for him.  His forced breaths per minute is up (from 30 to 45), he's "riding the vent" too often -- which means too much of the time he relies entirely on forced breaths from the vent to sustain him and he's not breathing much on his own. Over the last few days his oxygen level on the vent has steadily gone up (from 25 -- or just above regular air saturation -- four days ago to mid-60s today).  He hasn't maxed out the amount of oxygen he can get from the machine, but it's not so cool that this number has to keep going up.  They are tweaking his TPN (his IV nutrition solution) in hopes that by making it less base of a solution, he'll breath better. (Who knew?)

Oh, also he will get another blood transfusion today for low red blood count in his blood.

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These days are hard. It's easy to look at a peaceful baby sleeping in his crib and know that he's doing exactly what needs to be done to thrive.  When he has hard days, though, I'm reminded of my own helplessness.  He is too young for kangaroo (or skin-to-skin) care -- his skin is too fragile and his neurological system is not well developed. I can't yet hold him and have that soothe him. I want to help him relax, but there's nothing I can do.

Today he is (gestationally) 25 weeks.  Fifteen weeks to go.  This is starting to feel like a long road.

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To end on a positive note, K & E finally got to meet their little brother today!  They've been battling a cold and so weren't able to hang out with him until today.  E's thinks he is the cutest and littlest baby she's ever seen.  K laughed as she looked at him, "He can't speak yet!  He can't even say 'goo-goo, ga-ga'"  They both seem to really like him.

Back to today, July 28 2013, a year later -- a spiritual note

I'm about to get church-y. (You've been warned.)

Our whole family went to church this morning. Jonathan ate his whole bottle while the congregation sang songs. No spitting up, no needing a break even (except to burp). And I'd put a little extra in, so he must have been hungry. A full five ounces down, like a normal baby. Then he went into Ms. Susan's arms. She's one of a few surrogate grandmothers / aunts in our area. He slept on her shoulder for the service. I love it that he can be in church with us. As my daughters say, "It's almost like he's a normal baby now.  He's not a preemie anymore, is he momma?"

The sermon was pretty good. Pastor Nick is talking about psalms. Today he looked at psalms of praise, and he used Psalm 111. He talked about the Israelites in exile. How they tended to forget God, in spite of all the signs he performed among them. That brought him to Psalm 111 - a reminder that God is worthy of praise. He reminded us of God's goodness and steadfastness -- even in his justice and anger. And he reminded us about the tradition of an ebenezer (not Scrooge) -- a "stone of help" set up to remind us of God's great works.

I think of the following hymn when I hear ebenezer:

Come thou fount of every blessing.

tune my heart to sing thy grace;

streams of mercy never ceasing

call for songs of loudest praise

Teach me some melodious sonnet,

sung by flaming tounge above

praise the mount - I'm fixed upon it -

mount of God's redeeming love.

Here I raise my ebenezer

Hither by thy help I've come

and I hope by thy good pleasure

safely to arrive at home

Jesus sought me when a stranger

wandering from the fold of God;

He, to rescue me from danger,

interposed his precious blood.

(or in some versions: "bought me with his precious blood.")

Apparently Pastor Nick thinks of this song, too, because there, half way through the sermon, he made us all stand up and sing it. Being a NICU parent forever shades the way you see the world. And even well known songs like this have put me to tears in the past, because of baby J. I didn't cry this sermon, but down the row Ms. Susan, with Jonathan snuggled in her shoulder, she choked up a bit. (I guess it's not just NICU parents then, after all.)

No matter what the outcome of last year had been, God would be worthy of our praise. He's God. But beyond that we knew that he knew and loved our son. We knew he heard our groaning. Prayers surrounded us. He walked with us. That made all the difference.

But that didn't make Jonathan's path easy or short. You'll see more as his story unfolds here. The next month will be very hard. And those hard days will leave Jonathan scarred. Still, God is worthy of praise.

When the time comes that I finally leave Jonathan in nursery -- probably in about a year  -- you church friends will see that he is a scarred baby. He has about seven easily visible scars, not counting the many that only an ophthalmologist can see.

When you see those scars - when you pick him up and his shirt goes above his belly button, or when he's wearing shorts and you see one above his knee (a failed attempt at a central line placement), or when he is swimming in the lake at a church camping trip - don't be sorry. Those days for sorrow have passed and are gone.  The scars are his ebenezers. They are our reminder - God helps.

Doctors were given skills and wisdom to know when to perform and how to save his life. When things looked the worst, when his kidneys failed or his bowels stopped working (yes, my biggest fear before birth happens to J) -- people prayed, and things started to turn around. Not by our works, but by God's grace.

The pastor today encouraged us to share the ways in which God has blessed us, to raise our own ebenezers. In a sense, that is what this blog does.

It's not that God makes our roads easy, but God walks with us in our troubled times. God still rescues, and God still heals.

This is my praise for today. Thanks for reading.