On the day my first son celebrated his first birthday, I learned that he was also going to be a big brother. My husband and I were elated, and once we discovered that we were having another boy, the idea of brothers blossomed in my heart and mind. I was in love with the idea of two little boys racing around and wrestling and filling our home with laughter for years to come. In February, when I was around 30 weeks pregnant, I came down with a fever, chills, aches, and the full load that my doctor assured me was the flu (particularly nasty that year); I was advised to stay at home unless my fever spiked particularly high or lasted a week. It almost did, but on day 6 it broke, I went on the mend, and I carried on.
My pregnancy had been picture perfect so far, and I often joked with my best friend (also pregnant) about how she had received so many more ultrasounds than I had. When I was asked to come in to check on the position of my placenta, I told her I was trying to catch up, not knowing just how true that would be! Everything changed at 33 weeks, when they assured me that my placenta was well out of the way for a natural birth, but that the ventricles in his brain were larger than they should be. After further ultrasounds, it was decided that he showed a variety of markers that “something” was off in his brain, but because of his size and position that far into the pregnancy, they couldn’t get a very good look at just what was going on. They offered to take a closer look “if we wanted to consider terminating” – that wasn’t an option to us, so we simply waited it out and monitored him by weekly ultrasound.
On March 11, 2008, Daniel was born after an ultrasound revealed that my amniotic fluid was dangerously low. His c-section birth was followed by a sudden crash, where he went from near-perfect APGAR scores to being whisked to the NICU with an enlarged liver and spleen, a blueberry rash, breathing difficulties, and platelet levels that were practically non-existent.
It was 2 days full of platelet transfusions and tests before they gave us a CMV diagnosis. We’d never heard of it before, and suddenly found ourselves thrust into a world of the unknown. Our son spent 2 months in the NICU receiving an intravenous Gancyclovir treatment; he was the first baby to receive that treatment for CMV in the St. Louis area. He fought each day to grow stronger, though he wasn’t without setbacks, particularly when a secondary bacterial infection made its way into his blood stream and nearly took him from us. Somehow, he made it through; he came home, but he spent another 6 weeks on oral Valgancyclovir there, with constant blood draws and monitoring.
Finally, after 4 months of treatment, he was free and clear of the medical doctors and ready to start on the long developmental journey ahead. After passing his newborn hearing screen, he was diagnosed as profoundly deaf in both ears at 3 months of age, and received bilateral cochlear implants shortly before his first birthday. The next few years were a wash of discovery and therapy. No one was able to tell us what to expect from our baby boy who was severely symptomatic but had undergone this anti-viral treatment that “could have” changed his outcome dramatically. We were given a directive that no parent can ever easily follow: wait and see. So we participated in all the therapies, we fought for every opportunity, and we waited impatiently for him to grow and show us just what he was capable of.
I think those first 4 years were probably the hardest ones I’ve ever faced. Uncertainty is not a friend of mine; I prefer to plan, to be able to know and to act. I felt like my hands were tied, was often overwhelmed, but at the same time was discovering a new perspective on motherhood and on life that has transformed my life.
Daniel’s journey has been filled with ups and downs. It took him longer to reach most milestones that parents look forward to, and he loves to chart his own path. It took him over a year and a half to walk; now he loves to outrun me (and easily can). At 2, we were told he would probably not communicate with us beyond a basic level; by 4, he had taught himself to read and was writing sentences responding to questions he could not verbalize the answer to. He spoke his first real words around age 3, but we learned he spoke only in vowels; it took another few years of therapy got him using consonants in speech at an (almost) age appropriate level. As I’m writing this, he is 7. He spends nearly half the day with his general education second grade class, participates in Cub Scouts, races around the playground with his friends, loves video games, and hates homework…pretty much like any seven year old boy.
We have joked since he was a toddler that he likes to go the way of most resistance. Because of his rough beginning and congenital CMV, he has hearing loss, poor muscle tone, moderate-severe ADHD, mild autism, and speech apraxia. He also has an infectious laugh, gifted mind, unconquerable spirit, and a mischievous streak a mile wide that endears him to everyone he meets. We still don’t know exactly what the future looks like for him long term, but it’s a lot easier to accept the uncertainty these days and enjoy the amazing journey he’s taking us on.
--Shared by his mother, Kelly
Posted: 1/10/2016 12:30:33 PM