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.


  1. What an awesome post! I'm so happy JAM is growing, learning, and thriving. You are doing a great job helping him, mama. I'm proud of you for sticking with isolation even though it's been rough on you socially and emotionally. We are contemplating going back on lockdown, this year, too. Jax caught the flu and it knocked him down for the count and he's having a rough time bouncing back. As you know, it's just not worth it. Maybe next year is the year for our 23 weekers!

  2. A-- I haven't been on social media a ton, but I saw that Jax got sick! So sorry!!! It's been an especially rough year for the flu in your neck of the woods. So sorry that he caught it.
    THIS is the year for our boys -- they will overcome their preemie and odd-but-not-preemie ailments and start to truly thrive. And then next year? Next year they'll be unstoppable! (That's my optimistic take on it all, at least.)

  3. Laura, thanks for the wonderful and newsy update! We are so happy with you for all the wonderful achievements J has made. We pray that he will continue to thrive in isolation.
    Aunt Patti

    1. Man, I just went through your whole story on You tube and now reading your blog. Your son is just so much fun to watch, could you put up an update video? I love his red hair. I am sitting around waiting on a grand kid when ever that will happen but right now I am a BIG Jonathan fan and I wish I could meet him. God Bless you and God Bless JAM and can we have a nother video? See JAM wasnt behind he was just bored to tears until his Chechur got there!!!!!!

    2. Average Joe -- I should do that. It's been a pretty intense two months, but we should get JAM out there again. (Pst -- always curious -- How'd you find this blog?) Thanks for your interest!


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