Ethan Part 13: Adjusting

Back by popular demand: Ethan's Story. If you need to refresh your memories about the first month of his life, you can reread Part 12 and all the stuff before that.

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Ethan was finally home from the NICU. Even though he was a month old, we hadn't felt like "real" parents until he was under our roof day and night.

After returning dozens of phone calls, we settled in for our first night. We changed Ethan into one of the few preemie outfits we owned. At the hospital, they had supplied most of his clothing for the first few weeks. We hadn't known what sizes to get before he was born, and most of the Newborn sizes we owned were way too big.

We set the bassinet up right beside our bed and put him down to sleep. He whimpered and started to fuss a bit. We couldn't bear to hear him cry, and it didn't feel right to make him sleep in a box again after a month alone in the hospital. We brought him into the middle of the bed. Once he settled down, he slept soundly there between the two of us. We watched him for hours. It felt strange having him home, as if we were going to have to give him back any minute.

One thing we hadn't experienced while Ethan was in the NICU was the middle-of-the-night feedings. Every night we would leave the hospital and sleep in a baby-less house. Despite all the NICU stress, we were very well rested. But with him finally home, we were learning to endure the sleep withdrawal that first time parents experience. In a way, we adjusted better than other new parents might have. We would've rather been woken up a dozen times a night than to have him away from us again.

We rented a hospital grade pump so I could continue expressing milk for Ethan. Nightly feedings were particularly stressful, but Jete was a great partner. Even though he was working full time and I was still on maternity leave, he would get up for every feeding. He'd gather all the pump equipment together for me while I changed Ethan. Then he'd feed him a bottle of expressed milk while I pumped for the next meal. Afterwards, he'd wash all of the tubes and bottles while I had some quality time with Ethan. Finally, we'd all drift off to sleep for a couple of hours, only to repeat the process again.

It was an exhausting time for all of us. As the weeks went by, I started skipping one, then two of the middle-of-the-night pumpings. I could tell my milk was dwindling, but I was just so damn tired. It was starting to affect my emotional state as well. I felt like I was never allowed to spend any time with Ethan because I was so busy preparing for the next meal.

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As a total photo freak, my visions of having a baby included having dozens of framed pictures all over the house. So when Ethan was 6 weeks old, I took him for his first "professional" photos. He was getting rounder and plumper and was so damn cute, I couldn't wait to show him off. I dressed him in a Peter Rabbit premie outfit, and was pleased to see it was starting to become snug on him. Sete and I pushed him around the mall, enjoying all the Oohs and Aahs of strangers. Ethan was unimpressed and slept the entire time, only waking up after the photo shoot had ended.

Moments like this, pretending we were a "normal" family, helped fill the time between unpleasant reminders of reality. Within a few days of his homecoming, Ethan already had dozens of appointments lined up. His Early Intervention coordinator came to the home when he was only a few days old and mapped out a plan for the next few months. In the beginning, he slept most of the day, so they would only see him every other week. We would adjust the frequency as he got bigger and more aware.

As a NICU baby, Ethan had to go to extra pediatrician appointments to make sure his weight was increasing. Thankfully, it was. Unfortunately, his head circumference was not increasing as it should have been, but his pediatrician was not surprised given all he'd been through.

Ethan had several appointments scheduled with specialists to follow up on his NICU care. One of his first appointments was with a Geneticist. Even though they had essentially ruled out a genetic cause to his problems, they needed to see him again just to make sure nothing had come to light as he got bigger. The Geneticist asked us dozens of questions about our family histories. He measured both Jete's and my head to see if they were of normal size. (I was surprised to learn that, despite the illusion that Jete's head is gigantic, we both have "normal" size heads.)

The doctor reviewed Ethan's bloodwork, the medical records from my pregnancy, and our family histories. After analyzing everything, he officially discharged Ethan from his care. We had it in writing: there was no genetic reason for what happened to Ethan.

We absorbed this news with mixed emotions. It would have been nice to have genetics to blame for all he had been through. But we also felt a glimmer of hope. Genetically, Ethan was "normal". Didn't that mean he had the potential to recover from the brain injury?

Unfortunately, our hopes would be dashed soon enough. In a few weeks, we had our first visit with Ethan's Neurologist, Dr. AJ. We would no longer be able to deny the truth about our son's brain.

NEXT: PART 14 - VERY GRIM INDEED