Thursday, January 29, 2015

Letter to my oral adverse child

Dear Son,
It is time. Time for you to start self-feeding a significant amount of your nutrition. More than just a few cherrios and sips of milk. You should start to use a spoon soon. Everyone says so.

As such, I'm giving you opportunities. Every meal I put puree on your tray. I give you crackers and spoons to dip in the puree. I give you opportunities to touch and play with different textures of food, even if you're not willing to put it to your mouth yet. And then I try to feed you myself with the spoon, as much as you'll allow. I don't force, but I do offer. You used to be much better at it, never needing the feeding tube, but you've become stubborn as of late. Now sometimes you take it, but most times you refuse and fake-gag, waiting for the sippy cup of milk or the feeding tube to satiate you.

Please, it's time. Practice learning how to self-feed. I know you're smart enough for it, I know you can do this.

Your Mom


Dear Mom,

I understand your concern. I also understand that the puree on the tray is really really slimy gross. Have you seen that stuff?  And the spoon is the terrible device that brings that slimy gross stuff to my mouth and face. Is it any wonder that any chance I get, I put as much of the slimy stuff as I can on said spoon and then throw it vehemently on the floor?

It's okay once it's IN my mouth, but lately you've been asking me to TOUCH it. And when it touches my hands and face? Well, you can understand why a civilized boy like me wouldn't like that sort of slime around him. Of course there will be push back when you're asking me to do the unthinkable. I hope you understand.

I try to be kind. I don't make too much of a fuss, I simply wipe it off my face with the back of my hand and then find the closest towel-like-thing (usually my hair) so I can wipe it off my hand as well. Yes, I make a face, but let's face it, purees make slimy messes. And I hate slimy messes. They lead to the second worst thing in the world: baths. Or washcloths. Both of which also aren't fun.

As such, and as I've showed you at multiple meals, I propose a different method of self-feeding, one which I think will serve me well for life.

"self feeding"
You have this tube you hook up to my stomach, as you alluded in your letter. I haven't figured out how you attach it to my second belly button (I've tried, but it's hard to see what you're doing when you hook it up under my shirt). But, once it's hooked up, I think I can do the rest.

I've tried to show you this. I begged and pleaded (and you FINALLY got the message and let me try), I know how to put the food into the syringe that leads to that stomach. I told you I knew what it was doing -- going down-down into my stomach. It's not that complicated, and if I pour it in, I don't have to touch it. It's brilliant.

I'm two and a half, mom. I can gavage my own food.

I even know about the plunger. When food stops being dispensed in to my tummy because it gets clogged, I push the plunger gently and the gravity feed resumes. I've shown you I can do that too. I've been insistent about it.

You want me to learn how to self-feed. I understand. You're a busy woman, and I'm a grown toddler. I propose, however, that you allow me to self-feed my own way. Don't teach me to tolerate slimy foods. They feel funny. Instead, just give me some expensive medical equipment, and let me do this my own way. We'll both be happier.

Your Son

P.S. Yes, in hindsight I realize that trying to put my cheerios down the feeding tube wasn't the best idea. I'll refrain from that -- and small toys -- in the future.

Saturday, January 10, 2015

Lessons about Life's Blind Spots

I attended a forum today at the local university. I will be honest, while it applies loosely to my educational training, the real reason for leaving the house this morning was not the topic of the forum. It was simply to get out of the house. The world of isolation and the cold of winter are both getting me down. That said, I am glad I went. The forum's topic was issues of the global church and, more broadly, issues of cross-cultural understanding. In short, we need each other. We need the perspectives that can be gained only through community.

As I listened, I knew two things:
1. These presenters had known the rawness of life. They have learned to walk when things are difficult and the weight seems too burdensome to bear.

While that is not surprising, I discovered that, because of our time in the NICU, I could relate to their stories in a new way. I learned these lessons in the NICU and they learned these lessons across the globe, but the way we responded -- the way God led us when things were bleakest and we had no more of our own strength -- were so similar. Their experiences resonated with one another, and with mine. I was nourished.

2. Jonathan's life can speak to our understanding of the world around us. Particularly, his vision helps me understand my own vision. So, in the "Lessons Learned through a Micro-Preemie" spirit of this blog, as I listened, I penned these thoughts.

As you, the blog reader, know, when my son was just a few months old, he was diagnosed with the worst form of retinopathy of prematurity, called Rush ROP, or Aggressive Posterior Retinopathy of Prematurity.  The vessels in his eyes were not growing correctly, and left untreated, his retina would become detached and he would become blind. The surgery to preserve his central vision would come with a cost, though. The scars the lasers left would limit or eliminate his periphery vision.

As you also know, the surgery worked. While he wears glasses, his central vision is preserved and (with the glasses) he can see even the smallest bead clearly.

At the last appointment with his eye doctor, I asked when Jonathan would be able to tell us what he couldn't see, so we could know how bad his tunnel vision was.

The doctor turned his head slightly and paused. "He will never be able to tell you what he cannot see," he said.

He further explained, "He will not see blind spots. He will not think he has tunnel vision. His brain will fill in everything." From memory or conjecture, my son's brain would make up for his visual failings, so things would always look normal to him.  Nothing is blocked out.

As I listened to the speakers at today's forum discuss our understanding of our world, it occurred to me -- we all have my son's vision. We all anchor our beings by focusing on things that make sense to us. We limit our own vision to bring greater focus to the world around us. It makes sense, but we must be aware that these blind spots exist. We will not see them as blank areas, because our brains will fill in those spots as best as possible.

This is why we should turn our heads from time to time and focus elsewhere. The blind spots must be acknowledged and questioned, even if we don't feel those spots exist.

Prior to getting his glasses, Jonathan spent a lot of time looking at his hands. It was the only bit of his world that he could see clearly. I wonder what we can do to think more broadly, to look beyond ourselves, to earn a new perspective.  I wonder how many of us, given the chance, would aim for that perspective. If we're going to be honest, we'll admit that it is easier and less painful to fill in the blind spots in our head than to turn that head and seek new clarity.

These are today's lessons learned from my micropreemie, and today's challenge.

Thursday, January 8, 2015

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!


"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.


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.

Wednesday, January 7, 2015

A thank you to our secret "Santa"

Remember a month ago when I posted about toys & games for CP/PVL kids? Did you see that comment where I especially coveted a certain item?

That item came anonymously in the mail a few weeks later.

And because I don't use my "real" name on this site, I know it must have been sent by someone who knows us personally and loves our son.  I just don't know the identity of that person.

So, dear "Santa," whoever you are, since I can't send you a note, here I say -- THANK YOU. J loves the blocks!

National Blood Donor Month

In honor of the brave souls who bare arms for our weakest, who dedicate their time and their veins to save those who don't have enough, thank you. Thank you to blood donors everywhere.
JAM & his sisters today.
This life made possible by blood donors.
This post (on PreemieBabies101) is in your honor.

You've saved my son's life more than once. When I was not able to give, you gave for him. You are heroes. Pass it on, encourage others to give.

(More on blood donations and preemies in this JAMmin' news piece.) 

JAM receives whole blood in preparation for surgery for NEC.