“I already knew I was pregnant with another boy. As we made small talk at our gender reveal party, I knew it in my heart. I already knew his name, and I knew the theme of the nursery. I suppose that’s a normal part of pregnancy, all of the planning and imagining. But it is safe to say that many things do not go as expected.
We had picked an outer space theme for Trevor’s nursery, not like a cartoon-y theme, but a mature theme that he could grow into, unlike the silly monkeys we chose for my first son. I had found a cute sign that read, ‘The stars aligned, and God brought me you’ and I used that as my inspiration. I was so excited to bring our sweet baby boy home to his perfectly planned out nursery.
He was born on a Sunday, the same date that my father passed away 3 years earlier. It was bittersweet. I was 6 months pregnant with my first son when we made the decision to remove my dad from life support, so this was now another grandson he’d never meet.
In the hospital room there was a little corkboard that had been written all over and right in the center was the name ‘Trevor’. I was so shocked and overwhelmed that this was happening on this date, in a room where our son’s name was written on the wall. I told the nurse, ‘Look! That’s the name we picked for our baby!’ She responded with a shocked expression and said, ‘That’s my brother’s name too!’ It seemed as if the stars had aligned.
We brought him home a few days later. He was perfectly healthy, 9 pounds, and cute as a button. There were so many family members and friends who came to visit, and they all snuggled him close to share their love. But the best of all the snuggles came from Trevor’s big brother who, nearly 3, shared all the hugs, and kisses, and snot a proud brother could share.
On Monday, at just 3 weeks and 1 day old, I noticed Trevor had a fever. I called the pediatrician and informed them that we had just been in for his 2-week checkup and told the doctor then that he had been congested, but now he had a high fever so something must be worse. They had us come in immediately.
We arrived at the doctor’s office and they checked us in by taking his weight and temperature, and then sent us to the examination room. The doctor came in a few minutes later, looked him over, and said he was going to admit him to the hospital ‘just to do some routine stuff’ since he was young for such a high fever. I didn’t love the idea, but I was willing to do whatever was needed. We walked across the pavilion to the hospital and went up the elevator to the PICU to be checked in for 48 hours of testing and observation. We didn’t leave the hospital for 9 days.
Wednesday morning, our pediatrician came by and explained that all tests were normal so far. There had been no sign of fever since he was admitted (I actually began to question if I knew how to use my home thermometer) so, as long as everything remained the same, we’d be discharged that evening! I was so relieved that nothing serious was discovered and I was ready to be back home with my husband and son.
Just an hour or so later, a nurse came into the room to start Trevor’s scheduled antibiotic infusion and something unexpected happened. Trevor started screaming and was inconsolable. I grabbed the phone and called for the nurse to come back in because I suspected the IV or medication was hurting him.
I don’t remember exactly what happened, but as she returned, I set him back on his bed to let her determine what the problem was. She immediately reached for the ‘Code Blue’ button on the wall. My baby wasn’t breathing?! ‘He was just screaming! How could he not be breathing?,’ I asked. I remember running out of the room with my face in my hands as all the doctors and nurses ran into his room. I made it into the hallway and I looked around for a familiar face. I recognized a nurse from a few shifts before and called out to her. She came to me and held me while I hyperventilated. What felt like hours ended in just a few minutes. A doctor walked out and said, ‘He’s breathing on his own. He didn’t need any help. He’s doing everything on his own.’ I was in shock. Just an hour earlier, we were making discharge plans and now this?
Our doctor came back and said because of his apneic episode that we’d be staying one more night for observation, but they felt strongly that he had just choked on some mucus that built up in his throat.
That night was rough. We tried to stay positive but it was so scary and confusing. I dressed my new sweet baby in some footie pajamas and wrapped him in a blanket. I noticed he had a twitch in his left shoulder and felt so sad he had been stuck in this place so long that he already had a crick in his little neck. Around midnight, his twitch had gotten worse and his entire arm was jerking. I called the night nurse in to look at him and she paged the doctor on call. He ordered an EEG for the next morning.
Thursday morning came with the most anxiety yet. An EEG tech came in and applied all the electrodes to Trevor’s tiny newborn head. She explained that they’d record the electrical activity of his brain for several hours and then send off the report to a neurologist who would determine if there were any problems. Not even 30 minutes later, the technician left and returned with a doctor who said, ‘Trevor is having seizures and needs multiple medications immediately to prevent further problems in his brain.’ I completely lost my composure. I couldn’t even understand this chain of events. What was going on?!
A neurologist came by Thursday evening and gave us (almost) all the answers! He said it’s probably just a little spot of (something I can’t correctly remember), but it’d probably be something insignificant in the long term and not to worry. He scheduled an MRI for the next morning to get definitive images for diagnosis. We were so relieved at his confidence and knowledge. We rested easy and were eager for the MRI to confirm his suspicions.
Friday morning was me and my husband’s 5-year wedding anniversary. He had gotten off work early to come to the hospital to see us following the MRI. Coincidentally, the pastor who married us on this date had surprised us with a visit and some prayers for our baby. It’s as if the stars had aligned again.
We later discussed that because we were just waiting for results, I would run home and freshen up and then surprise our oldest son by picking him from his Mother’s Day out program. We went and got ice cream and stopped by my mom’s house to say hello, and my then phone rang. My husband was calling to tell me the neurologist had come by with the results and wanted to talk to both of us. I was on speaker phone in the hospital room and the doctor spoke the words that still make my heart sink to my toes: ‘Trevor’s condition is much worse than I expected.’
Our son experienced a multifocal bilateral ischemic stroke. We began all sorts of testing, and were given referrals for a geneticist, hematologist, cardiologist, neurologist, and physical therapist.
To this day we still have no answers. Every doctor we’ve seen has said the same thing. ‘Trevor’s clinical presentation does not match his MRI.’ We weaned him all of medications by 6 months old, and now at 18 months old he has all his cognitive and physical abilities and is currently working on his speech.
Trevor has the most beautiful smile and infectious laugh. He and his brother love playing together. They run around the house and build legos and color. They love dancing while Alexa plays music. We still don’t know if there will be any long-term effects but for now, he’s happy and healthy and that’s the greatest blessing!
My husband and I are so amazed at our son and are so grateful we were able to lean on each other during this difficult time. They say marriage is for better or for worse, but when you say your vows you don’t imagine this kind of stuff to be the ‘worse’ they’re talking about. We still talk about all the things we imagined as we were preparing for his birth, but we never expected that we’d be asking ourselves will instead of when. We never expected our baby to be such a miracle, but sometimes the stars align, and God provides a blessing.”
Provide hope for someone struggling. SHARE this story on Facebook with family and friends.