Patrick Scott Marvel was born on April 27, 2022 at 12:19 PM. In what we now know as "true Patrick fashion," he thought he would throw us some curveballs throughout my labor. I had intense contractions that lasted long enough to watch the Avs lose to the Jets on Sunday night, and then win against the Blues on Tuesday night. Once they finally would admit me to the hospital, I pushed for five hours, the epidural fell out of my back halfway through pushing, (yes, fell out), they attempted to vacuum him out twice, and he ended up arriving via C-section. Once Patrick was Earth side, we had 12 weeks of newborn exhaustion and bliss.
The first week of August 2022, shortly after Patrick had turned three months old, we noticed he was having some weird arm and leg movements- almost as if he was doing crunches. It happened randomly, probably three times a day. I did what all new moms should never do… got on Google. What I found was concerning and the YouTube videos that I found were exactly what I was seeing at home. We went to the pediatrician, who after conversing with a few other pediatricians in the office, told us it was probably just some leftover newborn reflex. My gut told me otherwise but I went with it. I videoed the movement and it was forwarded it to a neurologist at Children’s Hospital in Colorado just to be safe. We went on with our day and went out to dinner with some friends. While at dinner I saw a random phone call coming through, and my heart sank because I immediately knew where this was going. It was the neurologist at Children’s Hospital, who told us we needed to get to the ER as soon as possible. I will never forget his words… “Time is of the essence. Drive safe, but hurry.” We did just that, and after the long process of getting admitted, we were up to the neurology floor and a nurse began attaching an EEG on Patrick’s head- 25 little electrodes glued to his head overnight. We didn’t sleep a minute and I was throwing up out of pure panic.
The next morning, the neurologist came into our room. She told us that Patrick had something called "infantile spasms"- exactly what my Google search had led me to the days prior. Infantile spasms are a rare form of seizures found in infants. The neurologist proceeded to tell us the EEG showed that the seizures were only coming from the right side of his brain, and that side had some really wacky brain waves. The left side looked great, but they wanted to do an MRI to see if they could figure out what was going on on that right side. Another moment that I will never forget- they had me sit in a wheelchair and hold Patrick as they wheeled us down the long, sterile hallways of Children’s Hospital to the MRI floor. Sounds dramatic, but I felt like I was in a nightmare waiting to wake up and I was praying that was the case. We got to the MRI floor and they told us that you could not have any metal on your body if we wanted to go into the room with him. I had some permanent bracelets and a necklace soldered on that I couldn’t take off. In that moment I could have cut them off and gone into the MRI with Patrick, but I firmly believe that was God's way of telling me not to. I let Brendan go into the MRI and I am so thankful I did. They put Patrick in a little tube and he screamed for about 20 minutes. They needed him perfectly still, so they let him scream himself to sleep. Definitely a dad job, and I'm so thankful Brendan took one for the team there.
The MRI showed that Patrick had a stroke at some point. They said that based on the imaging on the MRI, it looked as though it had happened a while ago. Either in the womb, during delivery, or shortly after. We will never know when it happened, and although it doesn't matter, I will always wonder. It's something I think about at least 5 times a day. Patrick's stroke team at Children's said "it was likely a complete freak accident." They also told us that 1 in 4000 babies have a perinatal stroke, and every human's highest chance of having a stroke is during delivery. Our delivery wasn't exactly short or smooth, so we definitely aren't ruling that out.
Side note, our quick visit to Children's Hospital had turned into a three day ordeal. I was still in a maxi skirt from dinner two nights ago. I wasn't comfortable sending Brendan across town to go home and get clothes so he ran to the Target down the street really quickly to get toothbrushes, toothpaste, and new clothes. When he got back we changed, only to realize he had left the security tags on every item of clothing he had bought. So we walked around Children's Hospital for two days with huge red plastic security tags on them. 😂
So, we are sitting there at Children's and we now know that our perfect little three-month-old son had a stroke and now has a form of epilepsy. The seizures were being caused by the abnormal brain tissue that had formed after the stroke. Where do we go from here? Step number one was to stop the seizures. The first line of defense was to put him on prednisone...A high dose of a very strong steroid. The hope was that this one round of prednisone will stop the seizures forever. He started the prednisone and the seizures stopped within 12 hours. (I use the word seizures, because that is what they technically are. However they aren't what you're imagining. Like I said earlier, they were super subtle movements). The plan was to be on this intense steroid for one month- two weeks of a very intense dosage then slowly weaning off. We learned rather quickly that steroids make you hungry, they make you angry, and as our doctor said, “he is going to feel like there are ants under his skin for the next four weeks." There really is no other way to put it, it was hell. It was a long four weeks of an angry baby and we watched our baby get bigger and more swollen by the minute. It was heartbreaking to watch, but he wasn’t having seizures and we were willing to do anything it took. These pictures go in order from August 4th, to August 21st, to September 3rd. He got so big, so fast.
This was definitely the most challenging few weeks for Brendan and I. It felt as though our world had been flipped upside down. My parents, who live less than five minutes away, moved in with us to help with the screaming baby all night, but more than anything we needed them to talk us off of a ledge multiple times a day and assure us it was going to be okay.
Two weeks into the prednisone, Patrick had another EEG. It showed that the prednisone was still working. No seizures were seen. We were thrilled and so hopeful. We had another one two weeks after that as we were weaning off the steroids. This time, the EEG showed that his seizures had returned. They looked quite different though… Rather than him doing a crunching motion, his eyes simply would roll to the left for less than two seconds. We were facing the heartbreaking news that he had failed his first medication, his best shot at overcoming infantile spasms. (And no, you cannot "grow out" of infantile spasms. They just become bigger, scarier, and with every seizure, there's a higher chance of brain damage being done).
The first week of September we transitioned into the next medication, which took a little bit longer to kick in. Perks of this medication? Less swelling and no hangry baby. Side effects of this medication? Has the potential to ruin his peripheral vision forever. This means we had to visit the eye doctor… Have you ever tried to dilate a four month old's eyes? And then keep them awake long enough for the eye doctor to do their exam? Turns out eye exams are hard when you're fast asleep. Another few appointments of a screaming baby and a tortured mom and dad. (And a hot mess of an eye doctor who had to google what she was looking for, on her phone right in front of us 🤦🏼♀️)
P started this medicine in the beginning of September and he can be on it for nine months to a year. We did monthly EEG's to ensure it was still working. Fast forward to the end of November, we met with our neurologist at Children's who we love dearly. It was time to start preparing for next steps in the event that Patrick fails this medication. The next best option is brain surgery. Sounds crazy, but when she said that we were weirdly relieved. We knew the medication route wasn’t working and wasn’t permanent. Since he had failed the prednisone, we knew his chances of any other medication working were very small. Spending the rest of his life hopping around from medication from medication, waiting for him to have a seizure, was our worst nightmare.
That's a lot for one post, so I'm going to leave it at that. The story has unfolded quite a bit more in the last month- there's another post to come. If you are reading this or hearing this for the first time, I promise we are doing better than you'd think. We have had 7 months to process and work through this- and we know that Patrick chose us to be his parents for a reason. That is getting us through!
In the meantime, he is the HAPPIEST baby you'll ever see. If you saw him, you would never know. He looks, acts, and IS "normal." We spend our days doing what most 10 month olds do- playing, eating, napping, babbling. We go to physical therapy and occupational therapy 3x a week to work on strengthening and using the left side of his body. (The stroke was on the right side of his brain, so the left side of his body has to work extra hard to keep up.)
We love you all and appreciate your continued prayers for Patrick!
We love you Sweet P! ❤️