Our Journey Begins

The first three weeks with Bryce were extremely difficult (as it is for every new parent). We knew something was wrong, but we couldn’t figure out what. He struggled to eat (nursing was tough, but so was a bottle). In his first five days of life he lost one pound. We were taking him in twice a week to check his weight. He was gaining, but very little and very slowly (at three weeks old he still hadn’t made it back to his birth weight).

He was also IMPOSSIBLE to wake up, no matter what we tried! Most of the time he would sleep for four hours straight, sometimes six (and we tried waking him every two hours, then every 30 minutes). At night he would cry for hours on end. He would become so frustrated that his body would lock up and get very rigid. We could hold him up and he would stand on his feet. I tried feeding, singing, rocking, and a bunch of other things to calm him down, but NOTHING WORKED. Lack of sleep was taking its toll and our nerves were almost shot! Most days I was stressed, depressed, anxious, confused and everything seemed to make me cry. I started calling my mom multiple times a day (always bawling) because I had NO IDEA what to do and just needed someone to tell me it was okay. I remember thinking how easy the new moms at church made motherhood look, and I felt like a total failure.

Then one night we figured it out. I had just finished attempting to feed Bryce when Justin got home from work. It was late (after midnight) but we decided to spend some much needed time together and watch a movie. Halfway through, Bryce’s little arm started hitting me repeatedly. I thought he must be waking up and wanting to eat, so I looked at him.

Some moments in life change you forever. This was one of them. The most fear, anxiety and sorrow I had ever experienced all took place with this one glance at my sleeping boy. Bryce’s entire body was convulsing, his mouth stuck in a sucking position, his eyes rolled back and quivering. I couldn’t breathe! In that moment I knew my beautiful baby was having a seizure. It only lasted five seconds, but in those few seconds I felt my world was caving in.

I don’t know how he did it, but Justin was able to calm me down after a while. Once I was relaxed enough to think I started second guessing myself. Maybe it wasn’t a seizure, after all babies don’t have seizures . . . right (someone please tell me I’m right)? We started watching Bryce like a hawk, but nothing happened . . . at least until 3 pm. Jus was about to leave for work when once again Bryce started convulsing and his eyes rolled back.

Bryce coming out of a seizure

Justin gave him a quick priesthood blessing, then left for work. I called the pediatrician and after talking with him for about 20 minutes, it was decided I should take Bryce to the ER. Fortunately Justin was able to get the remainder of his shift off. He picked us up (good thing too, I was an emotional wreck and there was NO WAY I could drive), and by 4 pm we were in the Emergency Room.

Bryce was immediately given an IV (the first time of many I’ve held my precious boy down so he could get poked by a needle) and hooked up to the monitor. Then the testing began. We started with an X-Ray. It came back normal. Next was a CT scan, also normal. Then an MRI, again normal. Part of me was grateful all his tests were coming back showing absolutely nothing wrong. The other part of me was screaming “WHY ARE ALL THESE TESTS NORMAL? SEIZURES. AREN’T. NORMAL!” I was confused, frustrated and scared, to say the least.

Bryce’s seizures became more frequent while in the ER. However, they were no more than five seconds long, so the monitors never picked up anything to indicate they were actually happening (his heart rate and oxygen level never changed). Naturally the nurses and doctors weren’t overly confident in what we told them was going on, but they gave us the benefit of the doubt. We were in the ER until 11 pm, when we were transferred to a room so Bryce could be monitored throughout the night.

The electrodes started falling off

When we got to the room, our nurses told us they get a lot of new parents claiming their baby is having seizures when, in fact, they weren’t. I know they were trying to help us relax, but instead it only frustrated us more to know none of them believed us.

We were given a camera to record Bryce’s seizures so we could show them. Around 4 am we caught the last two seconds of one. Justin immediately took the camera to the nurse. Finally she realized we were telling the truth.

At 8 o’clock that morning the NICU doctor came in to do another test, a lumbar puncture (spinal tap). I knew if I wanted to comfort my baby after this procedure then I shouldn’t watch. Across the room, three nurses pinned my baby down while the doctor stuck the huge needle into his back. Bryce’s screams of agony tore me apart!  I had to sit down so I wouldn’t faint and I just sobbed (the connection between a mother and child is truly amazing). I looked up at Jus for comfort. He was watching the procedure and silent tears were streaming down his face (this only made me cry even more).

We didn’t get the results from his spinal tap for a few days, but they also came back normal. This meant that we had no idea what was causing the seizures.

Finally the electrodes stayed in place

We wrapped his head to ensure they didn't move

Before Bryce could be diagnosed with epilepsy he needed an Electroencephalogram (EEG). At 10 am the same morning of the spinal tap, the technician came in and began putting electrodes all over Bryce’s head. It took an hour to cover his head in wires, then another hour to observe his brain waves. He had at least four convulsions during the EEG that we saw (and many more that we couldn’t see). Turns out he’d been having seizures since the day he was born (probably even in utero), we just didn’t know that’s what was going on.

By the end of the day we received the results from his EEG. Finally test results were ABNORMAL (it proved that Bryce was having seizures and not just a few, but hundreds we couldn’t see). He was then put on Phenobarbital (an anticonvulsant). WOW! What a difference it made! His convulsions stopped (at least for a little while) and he was a completely different baby! He actually wanted to eat (he still wasn’t good at it, but much better than before). He was happy while awake, and we could even wake him up without much trouble. The difference was unbelievable!

We stayed in the hospital over the weekend so Bryce could be monitored a little longer and to make sure he was on the right dose of medication (too much would be toxic). Then, Monday evening we were discharged. I’m not going to lie, I was a bit nervous to go home. What if he started having seizures again? Would he outgrow these seizures, or would he always have them? Could I actually do this? Was I ready to? Little did we know, our journey had just begun.