Mama worries

The same week Owen turned four months I was nursing him just before bedtime and he started to shake. His eyes rolled back in his head and his head and arms were shaking rhythmically. Jeremy was at work that night so I wasn't sure what to do. I pulled him off the breast and tried to wake him up - I wasn't sure if he passed out or had fallen asleep. He sort of opened his eyes and his pupils looked like tiny pins. He went right back to sleep. I tried to stay calm, and called Jeremy. I didn't know if it was a seizure or what had just happened to my precious baby - all I knew was that it was really scary.

Jeremy came home shortly after and asked me again what happened and checked on Owen. We had his 4-month visit in a few days so we decided to ask then - unless it happened again.

I brought it up with O's new pediatrician and he said if Owen was at the breast, transitioning to sleep, and then stopped shaking when I woke him that it was probably a benign myoclonic jerk. He said it was kind of like when adults are falling asleep and we twitch a little. He said it can be more pronounced in babies. Since it had only happened that one time, it wasn't anything to be worried about.

Over the next few weeks it was happening more and more until a few weeks ago when it happened every day at both nap time and bedtime. Each time I would wake him because it was so unsettling. The frequency started to worry me, so when I went to the pediatrician for the lactation appointment I brought it up again. They decided to order an EEG for my little babe.

Last Friday, on Daddy's only day off, we were back at Children's hospital for the EEG. I was told the test would take 90 minutes and I needed to bring O tired and hungry, "try not to let your baby sleep for 2-3 hours prior to testing" the lady on the phone said. YEAH. RIGHT. We ended up getting an earlier appointment so it had been about two hours since O had eaten or slept. By the time we arrived he was hungry and tired.

When the tech called us she said, "Okay we're ready for Owen." Jeremy and I both stood up.

"Oh, Dad - you can wait out here."

This was her first mistake.

No. absolutely not. Both me and my husband are coming back.

Okay, suite yourselves but this test takes over an hour.

We know.

When we got back to the room, she grabbed Owen from me and started wrapping his arms down in a sheet and strapping him down to a table. Owen was screaming, my poor tired, hungry boy. She is frantically pasting the leads onto his little head - all 23 of them. Then she says,

Do you have a bottle or pacifier?

No, he doesn't take a bottle or pacifier. I breastfeed him.

Well, they should have told you when you scheduled - he has to remain completely still in this position. Do you want me to get a pacifier for him?

No. I told you he doesn't TAKE a pacifier. (Owen screams louder) And he is hungry!

Well, he's going to have to wait an hour before he can eat. I need him like this.

I started to get really upset and cry. Jeremy tried to calm me down and communicate our concerns to the tech. We explained what we were told on the phone and that we brought our own swaddle, which would keep him much calmer than what she was doing to him. We were told that we needed to recreate the environment in which the shaking episodes happen and that meant to breastfeed him when he was tired.

The lady could see that I was obviously upset. All I kept thinking in my head is THIS IS NOT WHAT IS BEST FOR MY BABY. THIS IS NOT HOW THIS IS GOING TO GO.

I had Jeremy take the Woombie out of the bag. I told her we were going to use that instead of strapping him to the table and I would pull a chair close to the leads so I could feed him.

Well, when people breastfeed they are all over the place, baby is wiggling, mom is switching breasts.

I assured her that Owen stays completely still, eats and falls asleep.

And as soon as we zipped our little pumpkin into his swaddle, he snuggled up on his Mama, ate and fell asleep.

The lady was amazed. Then Jeremy decided to tell her that he was a RESIDENT ON THE SURGERY FLOOR. I think the lady almost shit. her. pants.

Owen did beautifully for the test. It broke my heart to see all of those leads on his head, but I knew he wasn't in pain and I was with him. He slept through most of the test and then fussed a little at the end. She showed him some flashing lights and then we were done. Mr. O was all smiles as we left - icky, sticky hair and all.

We received the results of the test yesterday and it was completely normal. Yay for my baby!! If he were having actual seizures everyday, chances are the EEG would not have been normal. Also, being able to wake him up to stop the shaking was a good sign that it was not true seizure activity. SO we're going with benign myoclonic jerks and the doctor says he will probably outgrow them.

I am glad we took the extra precaution. It gives me peace of mind now when the episodes happen. I am also glad we advocated for what was right for our baby. And I will never hesitate to do it again.

uh, even now these pictures make me a little sad - sweet boy in his spider-man onesie. He WAS a superhero that day!

Nursing boy, completely still

Mama loves you angel

As soon as we got home, Daddy snuggled our chubster before we put him in the bath to scrub all the icky paste off his head

Very thankful for our perfect boy.