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Ike-a-saurus was busy today. In the 35 minutes after our nurse left for the afternoon, I lost him twice.
"Where's the baby?!" I shouted, running through the house. The front door, of course, was wide open. The wee-er one, putting on her coat, helpfully gestured outside. And there was Ike, sitting in the driveway, poised to eat a random berry he'd found.
I snatched him up. "How did he get out here?" Innocent looks all around. "He just did," the wee-er one answered. Uh-huh.
So back inside we went. I sat him down on the floor in the kitchen while I contemplated what to burn cook for dinner. I turned around and he was gone.
"WHERE IS THE BABY?" I yelled. More innocent looks from the older kids. I ran into the living room and I saw the tail end of a tiny diaper rounding the corner - upstairs - into my bedroom. So I hoofed it upstairs and dragged him back down to the kitchen. This time, I strapped him in his high chair and gave him some tomato paste to play with. (Side note: why doesn't tomato paste have fat?)
Fast forward to later in the evening. My husband was finally home after being trapped in traffic, the older kids were upstairs shouting things at him in unison and Ike-a-saurus and I were hanging out downstairs.
Ike bolted for the stairs, but this time I was with him. He stopped on the little landing and we played a quick game of "I see you on the stairs, get over here" which is like peek-a-boo, but involves slapping your hands onto the stairs and ducking your head and sometimes smashing your eye into the railing.
Tonight, the game was going along bruise-free when I noticed that Ike's foot was caught in one of the creeping tendrils of the plants we have on a ledge high over the stairs. I reached over to get the leaves off his foot when BAM. The pot - twice Ike's size - came crashing onto the stairs. There were pot shards everywhere. Wet soil was on the wall, the baseboards, the stairs - and covering the entire right side of Ike's body from his hair to inside of his diaper. That pot missed clonking him on the skull by about a millimeter.
If it's not one thing, it's another. Are we living a version of Baby Final Destination? Because if we are, THAT IS NOT COOL, UNIVERSE. NOT COOL.
Tomorrow I have no plans to pee or cook or go on the stairs. We'll see how it goes.
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.
"This is my trach, peeps. It's good for breathing."
