Two Scary Words with Scary Possibilities

I was put under general anesthesia when I had Maksim, and the first thing I remember when I woke up, was my obstetrician and the neonatologist telling Logan and me a bunch of numbers and statistics regarding survival rate and quality of life for babies born this early. Terminology was used like PDAs, brain bleeds, echocardiograms, head ultrasounds, retinopathy of prematurity, cerebral palsy, and necrotizing enterocolitis. Thankfully, my foggy brain was able to understand most of what was being said due to my nursing knowledge, but there were still a lot of scary unknowns and outcomes that required time to just wait and see how Maksim would be affected.

Maksim had so many tests run while in the NICU, three of which were head ultrasounds that we agonizingly waited for the results of. As Maksim's mom, I think these were the tests I stressed over the most. A PDA can be fixed with surgery, and NEC can ultimately resolve with intervention and cause no lasting effects. But brain bleeds. Brain bleeds are scary and bring along with them results such as cerebral palsy and other mental and physical deficits.

I remember the feeling I had when Maksim's last head ultrasound came back with clear results indicating no brain bleeds. There was a lot of relief knowing he had made it past that hurdle. Unfortunately, brain bleeds are not the only cause of cerebral palsy, and even without them, the micro preemie population remains at high risk for this disorder. Therefore, for a NICU mom, those scary words tend to annoyingly resonate in the brain when physical, mental, and social milestones are delayed.

I have watched Maksim progress and meet many milestones in the last year, but I have also seen delays that have continued to concern me. CP has come into my mind many times, particularly the past couple of months, and my fears were validated last week when Maksim's therapist mentioned it and suggested an evaluation by a neurologist.

As one might imagine, I have spent the last week tirelessly researching cerebral palsy. I have done way too much reading and video watching in an effort to come to my own conclusion on whether or not I think he has it. I have compared and contrasted and planned and prepared. I have researched medical equipment and therapy programs for children with cp. I have watched videos of kids with cp and videos of kids without it. One minute I am convinced he has it, and the next I am convinced he is just delayed and needs more time. In short, I have driven myself crazy in an effort to know, and plan for, the future.

We were able to schedule an appointment with a pediatric neurologist in Salt Lake, but it will not be until March 19th, which definitely seems like light years away. In the meantime, I pray I can live in the moment and enjoy my beautiful son without worrying about the future.


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