The Road Never Ends

A couple of weeks ago, the kids and I were at my parents watching tv (I think it was the Olympics actually). I was nursing Gabe when he suddenly started shaking. It wasn't violent like a seizure and he never stopped nursing, but his body was shaking. I wasn't sure what to do, but he stopped and kept eating and seemed fine. A few minutes later he did it again. This time I yelled to my mom to come and watch, but by the time that she got over he'd stopped.

He did it a couple more times over the next few days, but we were all sick, so I thought that perhaps it was just part of the cold. I did call the pediatrition, but she wasn't concerned enough to tell us to take him to the er on a Saturday.

A few days later, when we were all healthy again and he was still doing it, I took him in for an appt. Everything looked fine, but given the fact that he's a micropreemie we get to be paranoid about absolutely everything, so she wanted to get an EEG, just to make sure.

An EEG is not generally a very traumatic test. There's no poking, proding, needles or pain. They stick things on your head and measure brain waves. Not a huge deal. Well, not a huge deal unless you've spent months with your baby in the nicu. Then it hits all of your ptsd triggers and you're a mess. 

When Gabe was in the nicu, I always held him on my right side. The way that the room was set up and the way that he as connected to all of the machines, I always had him on my right side. Since we got home, I always hold him on my left side. I'd never thought about it until I was sitting in the hospital (again), holding my baby on my right side (again) who was hooked up to a bunch of wires (again) while I sang him all of the songs that I sang to him in the nicu. 

I got Gabe to sleep while the tech went to start the test. Then she left the room and came back with an IT guy. 20 minutes later they told me that there was a problem with the software and they were going to have to call the vendor and I'd need to bring him back to do the test again.

I was a disaster. It hit all of my triggers anyway, and now I had to do the whole thing over again??? Plus, we still didn't know what was going on. I drove to my parents house, handed my dad the baby and completely fell apart. It was the worst I'd lost it since we got home.

A few days later, the pediatrition called and said that they weren't sure when the machine was going to be fixed so I should take him up north for the test. Well, long story short, after trying to get an appt up there for a couple of weeks,we got referred to Seattle instead. So last weekend, Pat, Gabe and I went to Seattle. (Bella stayed here with a friend and had so much fun that I'm not sure that she even noticed that we left...)

Seattle was fun. We wandered around and got a lot of good food. Gabe exploded a few diapers in public places (including Pike's Street Market and the light rail). We even met up with Pat's nephews that were in town for a video game convention.

Gabe was a bit overstimulated by Seattle. There was so much to look at that he's just stare for an hour and then fall asleep for awhile. He also found funny things interesting. He got to have lunch in front of Husky stadium and instead was more interested in the concrete wall...

The trip was fun, but there was still this overarching stress of this appointment. The night before we went in, I was a mess. I'm not even sure that I can put into words what it was like to walk into that hospital. It was so hard. We just got our baby back from the hospital and here we were, taking him back again.

Only one person was allowed in the lab with Gabe, so Pat went to find coffee and I went back for the test. Poor Gabe was not very happy about the whole thing. They told me to make sure that he slept two hours less than normal, so he was tired and hungry and cranky while they got him all set up.

But, as soon as they let me hold him he calmed down, nursed and promptly fell asleep. He did great and there were no software issues with the machine this time! :) He even had an episode during the test, so they were able to see exactly what was going on.

We finished the EEG and then we had to kill 4 hours until we were able to talk to the neurologist. That wasn't hard on my head at all... Anyway, after lunch, packing, napping and wandering aimlessly, we went back to the hospital. It turns out that Gabe is not having seizures, he's just having shuddering episodes. They don't know why, but they're not worried. His brain looks completely healthy, he's developing correctly and, once again, they can't believe that he's a 23 weeker. So, all that stress was for nothing. :)

Walking out of that hospital was such a wonderful feeling! We actually got to take Gabe home with us, which was one of my huge fears about the whole thing, and he's fine. He just has these strange episides that we'll keep an eye on. I can handle that!

The trip home was rather eventful. Apparently a 2:00 appt is too late in the day if you're trying to catch a 8:00 flight. Between the appt, picking up our bags, taking the bus to the lightrail, the lightrail and TSA (which was a short line, however apparently you shouldn't put your baby in overalls and they set off the metal detector and no one knows what to do...) we just barely made the flight. The Gabe screamed for an hour and a half on the flight home. Apparently he felt that it had been a long weekend...

But we're home now, we have answers and all is well. I still jump when he shudders, but at least I don't have to worry that something is actually wrong. That said, this preemie journey is never over.

Here are a few more pictures from the trip.