From the first ultrasound revealing his possible double
collecting system to his first broken cry in the operating room where he
was born, I knew something was unique about my son. I knew our journey
would be new, different, and that there would be struggles, but what I
did not know is just how many questions I would have.
In those first 48 hours my questions brought me to tears. Why can't I see him? Why can't he nurse? Is he going to be okay? It was difficult enough dealing with my own trauma from our emergency c-section, but the ceaseless concern and separation from my son was awful.
During those first days, we just were not sure why he was having so many struggles. He was acting like a 33/34 weeker, not the 36 week baby he was. The Pediatrician chalked it up to WWMS WHIMPY WHITE MALE SYNDROME, saying that boy babies tend to struggle more when early. And there was the trauma of my failed induction, finding out he was footling breech, and having the unplanned emergency c-section, plus all the magnesium sulfate I was given to prevent seizures from pre-eclampsia. So no one was certain why he couldn't feed or maintain his temperature or was having pulse-ox issues. What we did know is he needed to get better, so on day 5 the NICU staff came into our room and told me he was going downstairs to their unit. We were hours from discharge and Silas just wasn't getting better. It was time for further action. So that brought even more questions into our lives. When would he be coming home? Would he always need an NG tube? What was causing all this
When we got to go home a week later, he was taking milk from a bottle. We were happy with his progress and exuberant about our family being back together. Things were looking up.
It didn't last long, the period of no questions. Silas continued to struggle through his bottle feedings and wasn't progressing in milestones. We kept being told it was because he was early, that we had to consider his adjusted age, but he wasn't even holding his head up and he should have been able to do that, right?
As each new question came up, and each milestone passed without being met, I began to wonder if we would ever understand our son's struggle. Was he really so delayed from being 4 weeks early? I had doubts. His Pediatrician ordered Physical Therapy evaluation because of his feeding delays and apparent pain. The lactation consultant kept working with us to foster a good relationship there, but it was three months before we ever saw the fruit of that labor. There were nights I sat crying, holding a crying baby who was hungry but wouldn't eat for a reason I couldn't understand. I would watch as his hands tremored and clenched wondering if these were what infant seizures looked like, or I would cradle him and try to imagine him one day crawling, walking, speaking. But at three months old he still wasnt doing anything more than a month old baby, and I was becoming discouraged and so we started therapy, hoping it would help him along.
At his four-month checkup I heard the word microcephaly for the first time, and while it was terrifying to put a name to what may be delaying our son, it was also relieving to know it wasn't all in my head.
Today I still have questions and I probably always will. But as we get closer to his neurology consultation, I find myself asking what we might find out, what his future will hold, and hopeful that we are on the road to finding some answers to where this crazy road is heading.
In those first 48 hours my questions brought me to tears. Why can't I see him? Why can't he nurse? Is he going to be okay? It was difficult enough dealing with my own trauma from our emergency c-section, but the ceaseless concern and separation from my son was awful.
During those first days, we just were not sure why he was having so many struggles. He was acting like a 33/34 weeker, not the 36 week baby he was. The Pediatrician chalked it up to WWMS WHIMPY WHITE MALE SYNDROME, saying that boy babies tend to struggle more when early. And there was the trauma of my failed induction, finding out he was footling breech, and having the unplanned emergency c-section, plus all the magnesium sulfate I was given to prevent seizures from pre-eclampsia. So no one was certain why he couldn't feed or maintain his temperature or was having pulse-ox issues. What we did know is he needed to get better, so on day 5 the NICU staff came into our room and told me he was going downstairs to their unit. We were hours from discharge and Silas just wasn't getting better. It was time for further action. So that brought even more questions into our lives. When would he be coming home? Would he always need an NG tube? What was causing all this
When we got to go home a week later, he was taking milk from a bottle. We were happy with his progress and exuberant about our family being back together. Things were looking up.
It didn't last long, the period of no questions. Silas continued to struggle through his bottle feedings and wasn't progressing in milestones. We kept being told it was because he was early, that we had to consider his adjusted age, but he wasn't even holding his head up and he should have been able to do that, right?
As each new question came up, and each milestone passed without being met, I began to wonder if we would ever understand our son's struggle. Was he really so delayed from being 4 weeks early? I had doubts. His Pediatrician ordered Physical Therapy evaluation because of his feeding delays and apparent pain. The lactation consultant kept working with us to foster a good relationship there, but it was three months before we ever saw the fruit of that labor. There were nights I sat crying, holding a crying baby who was hungry but wouldn't eat for a reason I couldn't understand. I would watch as his hands tremored and clenched wondering if these were what infant seizures looked like, or I would cradle him and try to imagine him one day crawling, walking, speaking. But at three months old he still wasnt doing anything more than a month old baby, and I was becoming discouraged and so we started therapy, hoping it would help him along.
At his four-month checkup I heard the word microcephaly for the first time, and while it was terrifying to put a name to what may be delaying our son, it was also relieving to know it wasn't all in my head.
Today I still have questions and I probably always will. But as we get closer to his neurology consultation, I find myself asking what we might find out, what his future will hold, and hopeful that we are on the road to finding some answers to where this crazy road is heading.
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