On the evening of December 12, Tristan had a fit of strange little jerks of her knees. By noon the next day, she’d had several more and, on consultation with the nurses in the family, we took her in to the Children’s hospital ER. Going back to the hospital woke a lot of feelings in me I didn’t expect. I had thought, hoped, assumed that once the babies were home all would be well. But all wasn’t well. I was on some level more upset about taking her back to the hospital than I was about the possibility that something might be really wrong.
We didn’t have video of the spells when we first took her in. It was, hands down, the most pleasant ER experience I’ve ever had, in that there was very little waiting around. But the resident and then the attending examined Tris, said she “examined very well”, and thought that the spasms we described sounded like “myoclonic jerks”—usually harmless spasms, like large hiccups. They started a referral to neurology just to be on the safe side and sent us home.
That night, we caught the above video; by this point Tris had had seven or eight episodes in 24 hours. At 10:30 at night we decided to head back. If I thought we’d been seen quickly before, this time was lightning. We just handed the registration nurse the ID bracelet Tris had gotten on the first visit, and were shown directly to a room. The resident and attending from before were still on shift, and considerably more concerned about the video than our descriptions. They showed it to the neurologist. We were assured that he still didn’t think they looked like real seizures, but they were going to admit Tris anyway.
Those words hit like a hammer.
Before that, it was the “everything’s probably fine, they’ll check things out just in case” bubble. After that, it was real.
They took us back upstairs, to the pediatric ward, one floor down from the NICU where we had spent so much time. The same but different. I was stunned, robotic. Going through the motions, while inside My vrai chanted how can I leave her here again???!?” over and over.
More upset, in that moment, about being back in the hospital than about the possibility that something might be really wrong with my baby.
Leaving her there was like tearing my heart in half all over again.
On the other hand, sleeping with only one baby at home was a huge treat.
The next morning felt like a surreal repetition of our NICU lifestyle. I packed up River and a little cooler of pumped breast milk and trudged back to the hospital.
They did the EEG that afternoon. As medical tests go, it’s pretty non-invasive, and I gotta say the funny little head-sock they use to cover all the wires was pretty adorable. And surprisingly stable, which is good because she had to wear it until she had an episode, and I was worried how it would handle nursing, since she often tries to whip her head back and forth wildly.
PICU was like a more chill version of NICU. I was a bit stressed about managing with River there and just me, but on the other hand, unlike in NICU I COULD HAVE RIVER THERE TOO. I could nurse them whenever they wanted. The nurses even held River (not a patient) a few times while I was feeding Tristan.
Tristan, for her part, seemed to fall back into the hospital routine, too, spending most of her time sleeping or sucking on a soother. They hardly ever use their soothers at home, and tend to spit them out after ten seconds when they do. She did enjoy the little fish tank video that plays on a screen above the bed.
And then, a couple of hours into the EEG, while the nurse was on her break, Tristan had her seizure.
It felt weird to be excited about that. But that was what we needed to happen.
The EEG confirmed seizure activity, but not the worst-case scenario, infantile spasms. The neurologist recommended starting an anticonvulsant, and ordered an MRI to see if there was any obvious cause for the seizures. The MRI would be sometime the following week, and if she tolerated the medication well, the neurologist was reassuring that Tris would be home before Christmas.
I won’t tell you the diagnosis was easy to take. Even though it was about as good as it could have been, in the circumstances. I cried. I just wanted to hold Tris and make it better. And the most likely cause of these seizures is brain damage related to the premature birth, so bring on another wave of guilt and maternal failure from that direction.
But I cried through it. Went home. Came back for an evening visit with my husband and Tyo. Cried some more. Bought a one week parking pass. Enjoyed another night of sleeping with only one baby at home.
By the time we came in the next day, they had already done her MRI. We were pleasantly stunned. No brain abnormalities detected, just a remnant of what might have been a minor bleed, probably from birth (so minor it didn’t show up on either of the two head ultrasounds she had in NICU). No tumors (my husband’s nightmare.) The neurologist said she could go home that afternoon.
So I guess we wasted some money on that parking pass.
It’s a mental adjustment, for sure. My baby who I hoped would be perfectly healthy, once we got through the whole NICU thing, isn’t. She might grow out of it, but she might not. But at least so far, it isn’t impacting her brain development, and now that she’s been on her medication for a couple of weeks she’s getting over the sleepiness that is the main side effect in infants. And the measures you have to take to protect kids with seizures are basically the same as what you do normally for infants. So that will be more of a thing later than it is now.
So for now, we’re good.