Bex's Story

After a 2 year struggle with infertility, our hopes and prayers were finally answered when I found out I was pregnant. I can honestly say that I LOVED being pregnant. Yes, it could be uncomfortable at times, but I truly cherished every moment, since it was something we wanted for so long. My pregnancy was going along smoothly until I went in for my 36 week check-up. I thought I was just really uncomfortable, but I was actually experiencing contractions. At 10:00 pm on October 24, 2013, Bexley Raquel made her appearance in this world, 3 weeks and 1 day ahead of schedule.

Unfortunately, about 24 hours after being discharged from the Maternity Center, we were admitted to the Children's Hospital because Bex was jaundice. Jaundice is actually highly common among babies born early, so we thought a few days of phototherapy and we would be home with our baby girl. However, her bilirubin levels were not going down as fast as the doctors wanted, which led to more and more tests (i.e., watching your baby have her blood drawn multiple times each day). At one point, they decided to do a brain ultrasound to check for bleeding in the brain, which might have been the cause of the slow decline in her bilirubin levels. Instead of any bleeding, they discovered suspicious shadows, so a follow-up MRI was ordered. The MRI revealed abnormal white matter in Bexley's brain. We were crushed and no one could answer what this would mean for Bex's future. We were referred to a Genetics doctor to run some tests to look at a series of metabolic and genetic disorders. Thankfully, this series of tests came back normal, which was a relief because many of the disorders tested for were debilitating and degenerative. We were relieved, but still we asked, what does the abnormality in the white matter of Bex's brain mean? Again, no one could answer that, so we were told to go home and watch her development very closely.

So for the last 7 and a half months, that is what we have been doing. We have been watching her grow and change and trying as hard as we can to put that abnormal MRI in the back of our minds. At her six month check up, our pediatrician mentioned she was slightly behind on some of her gross motor skills. He made some recommendations on things to try and call back in a few weeks if still concerned. A little over a week ago, I noticed Bex start exhibiting some abnormal movements. These episodes tended to occur around meals or were followed by a burp, so our first thought they were a result of gas or constipation. When they started occurring with increased frequency, we called the pediatrician and made an appointment to go in to show the on-call doctor a video of one of her episodes. Like everyone we showed the video to, his initial feeling was gas/constipation. However, due to her history, he recommended we follow up with neurology. All weekend we rationalized it was gas issues, but every time she had another episode, we both felt something just wasn't right. By Monday, the episodes had increased in severity and frequency. When she had one on Monday lasting 8 minutes, we called the doctor to say that she wasn't getting better and we were taking her to the ER.

We were admitted to the hospital, so Bexley could be monitored for 24 hours with a video EEG. After 8 hours of monitoring, the pediatric neurologist stated it was clear she was suffering from infantile spasms or West Syndrome. She was started on a high dose steroid treatment and anti-seizure medication. The neurologist actually seemed to think that it could simply be West Syndrome (Infantile Spasms) caused by the abnormality in her brain or that might be why she had the abnormality originally (chicken v. the egg). However, there could be other underlying disorders causing things. Therefore, we consulted with the Genetics doctor again. They drew more blood to look at several genetic disorders that may be the cause of her spasms. We will get those results in 4-6 weeks. 

Chris and I decided to create this blog, so we would have an easy way to keep everyone in the loop about how little Miss Bexley is doing. We truly appreciate all the support from friends and family so far. Bex is one lucky girl to have so many people on her team cheering her on.