And so it begins

the PTSD
getting better getting worse
step forward think back

This is the night it all started last year.

Though, it actually it started as a pretty joyful day. The wee-er one and I watched the inauguration proceedings all day on TV. I spent most of the day holding Ike-a-saurus, nursing him, playing with him, watching him sleep – and I felt lucky. Happy. Relieved that our terrible 2008 was over and that Obama was ushering in not just a new administration, but a new outlook on everything. I was wearing my Obama shirt, where he's riding a unicorn on top of a pedestal. It really was a unicorn and pedestal kind of morning, from a unicorn and pedestal couple of weeks. We were done with the bad and ready for the good.

And then, that night, I noticed that Ike was making a weird noise when he was breathing. He didn't seem sick and he was eating fine, but the noise was kind of disconcerting so I called the after hours number at our pediatrician's office. There was some brief discussion over whether it was worth the $15 charge, but we decided to go on and call because the noise was kind of weird and we were still getting used to having our little preemie at home.

As soon as the doctor talked to me she said, "Is that noise your baby? Is that him breathing?" I said yes. She said, "You need to take him to the ER. It's probably just croup, but with his preemie history, go get it checked out."

I got a little nervous after that, even though until then I'd been pretty calm. I'd only had to take one of my kids to the ER once, and that was for a bonk on the head out of town.

So we packed him up in his car seat and I drove him to the children's hospital. They diagnosed croup, gave him some breathing treatments and sent us home. He was still making the noise. Louder, even, but they said it was normal and he was fine.

The next day we followed up with the pediatrician who was concerned. He directly admitted us to the hospital just to on the safe side. He, like me, wasn't a fan of the noise Ike was making to breathe.

We came home two and a half days later. Then we followed up with doc and were sent back to the hospital because of the noise. Then home again, a visit to the ENT, and a diagnosis of laryngomalacia and reflux. We were told the floppy larynx was making the noise – swollen from reflux, and possibly aggravated by croup. We were told he would be noisy until 12-18 months and then everything would probably resolve.

And yet, the noise got louder.

So loud I couldn't hold the baby and talk on the phone at the same time.

This was his breathing, while perfectly calm, perfectly happy.

I made that recording seven days before they were performing chest compressions and intubating him in the PICU.

But even with that level of noise the ENT we saw (a second opinion) said that as long as Ike was eating and gaining weight everything was fine.

Obviously, it was not fine. Obviously, it was not croup. Obviously, I am still not over everything that happened. I replay those weeks over and over in my head wondering if there was anything we could have done, anyone we could have seen to somehow have avoided the trauma to come.

Obviously, there was nothing we could have done. Maybe, maybe we could have requested a bronchoscopy to investigate under his vocal cords. If we had done that, he probably would have been trached immediately, but it would have happened before he got sick. If he had been trached earlier we might have avoided the two weeks on the ventilator in the PICU and the intubation that could have scarred his airway even more. But no one – no one in Austin anyway – was going to put a seemingly healthy 5-month-old preemie under general anesthesia to look at his airway. Not unless he was having blue spells or losing weight.

So today was the day it all started. Had he always had a narrow airway and he just hit a critical weight and that's why the stridor began? Was it damage from silent reflux we knew nothing about? We'll never know, and I guess it doesn't matter, but I will always wonder.

Everyday, when I'm falling asleep, or waking up, or going about my day, I think of the night of Valentine's Day. 26 days after the stridor began. Me, barefoot, chasing a racing gurney down a hospital hallway as a team whisked away my gray, but still crying, baby. After 26 days of deafening stridor, complaints and jokes about how the family was going to have to yell to be heard for the next 18 months, a tube was put down his throat, and then a few days later the trach, and I have not heard him cry since. He cries, of course, but not with his voice.

Everyday I'm thankful we have that trach, and everyday I think of the last day I heard him cry. We can hear his voice now – he's learning to vocalize around the trach – and it's amazing. But I've still never heard him laugh. Well, once in his sleep, on January 19th last year. And now he's nearly 17 months old. He laughs, chuckling in his silent trachy way, and it's awesome. But I haven't heard him laugh laugh. After weeks of whispering to him in the NICU, just after he was born, that he was going to make it and one day he was going to give a baby chuckle and the NICU would be behind us, I feel like I made a promise I shouldn't have. But who could have guessed all of this?

This was when it started. And it is making me freak out a little bit.

But this is how he is now, so I should chill with the PTSD. More zen, less ohshitohshitohshitthisiswhenitallstarted.

I just keep telling myself, this is how he is now. He's OK. It's OK. I need to be OK, too.

SmileyIke
"This is my trach, peeps. It's good for breathing."

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10 thoughts on “And so it begins

  1. You’re a great mom. Great family. Great community. This little man’s going to grow up and do something huge someday, and it’ll be because he and his family weathered the storm. Much love.

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  2. Tears here, girlfriend, for everything you guys have been through. Every time you post his picture it just makes me want to weep. (Lie–usually I do weep.) He looks so amazing and happy and beautiful and HEALTHY. And I can’t imagine the memories you have to deal with even in the face of him looking so dang great. I think perhaps a little therapy for you would not be a bad idea. I know I’d need it after going through all that.

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  3. PTSD sounds like the right term to use. The wife and I feel the same. With all the intense joys and accomplishments, the process of having your heart ripped out over and over again is still so hard for us parents.
    Your Ikester is a wonderful miracle just as our Annie-lu is. Hang in there mom, don’t let the the grief get the better of you!

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  4. LOOK AT HIM! That face. Those beautiful eyes. That cheeky little grin. He brings tears of joy to my eyes, just looking at that smile.

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  5. our paed diagnosed – no, suggested – croup. and then they told us it was likely laryngomalacia. they were totally wrong and totally flippant. the ENT was shocked by the time we reached them and emergency trached.
    i have so little faith in non-specialists.
    sorry to put this when it’s not the point of your but it just made me so angry to read.

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  6. even if you haven’t been there, your writing takes us there 🙂
    – ps, on 2 random occasions when emily was young we happened to suction her when she was laughing and a little baby giggle came out. her dad and i both started to cry…after LTR we CAN hear her laugh!
    i don’t know you guys but i can’t wait for you to be at this point too.

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