Respiratory problems…that was the brunt of what we could expect, if anything. So it wasn’t any surprise when they pulled our baby girl Maura out that she needed to be resuscitated. She didn’t cry. It took a minute or so. It seemed more like five. Overall, Maura was pretty good. They took her to the NICU just to keep an eye on her, but after a mere 4 hours, they brought her to me, and I snuggled down and tried to nurse.

For two days, things were normal. I was recovering from my cesarean section, and Maura was coming along fine. After being in limbo for a few days, it was quite a relief that there weren’t any other issues. I was ready to get out of there. I wanted home. The doctors all gave the OK for us to head out with one last stipulation – the car seat study. While Maura weighed in at 6 pounds 5 ounces, she was still a preemie by definition. Hospital policy required all preemies to take the car seat study. So I nursed Maura and changed her. She scrunched up her face as if to cry, but then settled back down. They took her off to be tested.

Joe and I waited for her, packing up our things. I took a short video of our hospital room as we were the first to use it in the new wing. Joe asked if he should head to the car.

“Just wait,” I’d said. After having to leave our son due to his bilirubin levels when he was born, I was just a little superstitious. 

When her test was over, the neonatologist came to see us. Maura had failed. She would not be able to go home. She had an “apnic” event. I felt as if I was being swallowed down a hole. This couldn’t be happening to me. Everything was fine. She was fine. They were going to keep her overnight for observation in the NICU. 

For two days, we watched Maura slide downhill. These apnic events became seizures. She was stripped of her newborn clothes, hooked up to monitors, and stuck with an IV with three antibiotics and phenobarbital. I remember the first time we walked out of the NICU. My husband cried. I promised him it wasn’t for long. This would all be a blur. Little did I know. 

On Friday morning, I walked in to see her. She wasn’t in an incubator anymore. She was holding her own, swaddled, sleeping. Things were looking up, or so I thought. The neonatologist came to talk to us. She said that if ever there was a time she wanted to transfer a baby to a better hospital, now was it. She mentioned Childrens Hospital in Philadelphia. It was all happening so fast. They were taking my baby…to another state…to another hospital…and she wasn’t coming home. 

Maura was transferred that afternoon to CHOP. It was such a foreign place at the time. Directions to get there, where to park, where the NICU was…we had no idea we’d soon call CHOP home for quite some time. 

Everyone knows NICU babies have rules. These rules are given to them by the doctors. They have to be off C-Pap before they can nurse, they have to breath on their own, hold their own core temperature, all those rules. Some babies are feeder-growers – just gaining weight and growing in womb like environments. Maura was a feeder-grower most of the time. I liked to call her “Regular Baby Maura”. I’d arrive at the NICU with my milk cooler at around 8 in the morning. We’d spent our days snuggling. Then there was the darkside – the seizures. 

You see, Maura has epilepsy. By definition, it means two or more unprovoked seizures. They thought it would pass. It wasn’t uncommon. They called it benign neonatal seizures. It was commonly controlled with phenobarbital so of course, this was the first course of treatment. Maura was resistant. They added Keppra which helped. Maura’s seizures stopped, and they sent her home after 17 days. We were kidding ourselves to think she was ready. She was so tiny in her carseat. She weighed less than 6 pounds at the time. She was still so helpless.

Three days later, she was seizing again. There were three at home. On the third one – when she turned blue – cyanotic – we brought her back. I felt so embarrassed. I couldn’t take care of my baby. I thought she was ready. She was far from it. There were several more that night. They were by no means under control. There were new rules. She wasn’t your run of the mill preemie. She had something to prove. Maura could have no more than 3 seizures a day (because after all, she was going to have them) and she couldn’t turn blue and need c-pap.

Every night before I went to bed, I’d call the NICU. The nurses were always so nice. They’d share every detail and wish me a good night. She often had good evenings – time usually not spent with us while we spent it at home with our toddler. It was the mornings that we’d wait with baited breath. I never called in the morning. It was motivation to get up and moving faster….to drive the 45 minutes to CHOP…to walk up to the NICU…to get her overnight update. It was usually then that I’d be let down. Her seizures liked to strike at night. I’d run the numbers in my head – Maura was far from coming home. 

Maura continued to baffle the specialists. Why were her seizures happening? Why hadn’t they passed on? What would they need to do to help her? They continued to dig deeper for answers. At one point, they even sent the geneticists to see us – to research incredibly rare (like less than 5 cases world wide!) disorders. It was quite scary at times.

One of the neurologists that had stopped in to see Maura in passing had mentioned Topamax. It was another seizure medication. Little did they know how much I’d research it. It was a different kind of drug. It didn’t react with the inhibitory reactors of the brain, it reacted with the excitatory reactors – a different approach – an option that I pushed for Maura for days before they finally gave the OK. It wasn’t approved for use in newborns, and I’d need to sign off on it. Maura’s seizures stopped nearly instantaneously. It was our miracle drug. 

I started calling the NICU in the morning. I found the faith I needed to believe this was it. And every morning, I reveled in the news. Maura was seizure free. The meds were working. Maura was given a new rule: If she could stay seizure free for five days, they would send her home. I knew this was it. 

After 35 days, Maura was released on three anti-seizure medications. 35 of the longest days of my life. I never thought that a 36 weeker would spend 35 days in the NICU. She had other plans for us. 

Maura has been seizure free for just more than 3 months. Do the math – as you can see, there were other seizures at home through the summer. Her medication levels were adjusted easily by phone and email, and we never brought her back to the NICU except to visit, of course! She is currently down to two anti-seizure medications, as we look to wean off of one in a few months to narrow her to just one medication. While 6 weeks in the NICU sleeping caused quite a bit of low tone, Maura is thriving with the help of Early Intervention and a lot of love at home.