In terms of micro-preemies, I have had it pretty easy.
Sam was big for his gestational age. Yes, you read that right. One pound twelve ounces is considered big.
His time in the NICU was pretty uneventful… at least after he had his PDA ligation and began peeing regularly. Yes, we were there for 95 days, but we managed to avoid many of the perils that we were warned about. Sam never had NEC (my biggest fear). His lungs were never an issue – in fact, he only spent 3 days on the ventilator. Somehow, my little 24-weeker managed to escape without a single brain bleed.
Our first year at home, we were so lucky. Aside from breaking the baby, Sam managed to make it his first year at home with no specialists, no therapy, and no hospital visits. I finally started to breath that first year, feeling like we were going to be OK.
Then, Sam started to remind me he was, in fact, a preemie. First, despite bathing in hand sanitizer and putting our house on lock down during Sam's second RSV season at home, Sam got sick. Really sick. Like five days in the hospital sick. It was like a slap in the face. I had tempted the fates by branding him the Anti-Preemie and now I was being dragged back down to earth.
After the RSV scare, Sam began having major problems with reflux and constipation. After a year with no specialists, we suddenly found ourselves with a pedantic gastrointerologist in our lives. Not long after that, Sam had his NICU follow up clinic visit, and concerns about his fine and gross motor skills were raised. So we added weekly Occupational Therapy to our routine.
Then, around his second birthday, I noticed Sam was not talking as much as I would have expected. After a quick consult with the developmental pediatrician, we were referred to speech therapy.
So, now, we were up to two different therapies a week + a specialist. Ah, the life of a preemie parent.
Then, in October of last year, I returned from a six day vacation and looked at my son with fresh eyes. I started to see things that worried me. He was unresponsive when his name was called. He wasn't making eye contact the way he used to. Much of his language seemed to have just vanished. I immediately feared Sam was showing signs of Autism.
And my fears were confirmed, when just two months later I was officially handed a diagnosis of PDD-NOS now known as Autism Spectrum Disorder.
This changed everything. We were now going from no therapies and no specialist to 20 hours of therapy a week, one specialist, and some alternative treatments thrown in for good measure.
We have been doing this now for almost six months, and time has come once again for everything to change.
Sam is turning three – and with that simple change in age, the responsibility for his care and therapy shifts from private insurance to the school district…. I think. The next two weeks Sam is undergoing hours and hours of evaluations to see what services he will qualify for. We could be looking at a special autism preschool classroom, speech therapy and occupational therapy - al through the school district. Or we could be looking at mainstream preschool with speech and OT through the school district. Or we could be looking at everything on insurance. Or. Or. Or.
So - right now everything is just - uncertain.
Do I know where Sam will be in a few weeks. No.
Do I know where we will be doing speech and OT. No.
Am I a person who does well letting go of control and having things uncertain. No.