I look at my son, and he literally takes my breath away. Right now, Isaiah is three years old and sitting on the floor surrounded by toys that he’s setting out for his little three-month old brother, Jonah. Both of my boys make me catch my breath at the awesome joy and responsibility they bring to our lives, but Isaiah’s story is so different from what I expected our first adoption story would be about. It includes a four-and-a-half-month NICU stay, our adoption process, three NICUs in two different states, three surgeries, gallons of tears, millions of prayers from hundreds of people, one court appearance, several home visits actually in the NICU and about a million dollars in medical costs.
We were navigating St. Louis traffic when Isaiah was born. We sped from Kansas City to Baltimore, Md., and on the 14 hour drive, we talked about our son who was less than a few hours old, weighing 2 pounds 2.3 ounces and had yet to hear our voices or feel our touch. We squinted constantly at the blurry picture his birthmother sent us even though he had so many wires and tubes that we could barely make out his sweet face. We knew there could be complications, but none of that mattered. All that mattered was that at 11:25 that morning, we became parents. He was ours; we were his.
While Isaiah was in the NICU, my husband and I tried to make plans and visualize what life would be like. But any NICU parent will tell you that you can’t make plans. It’s a tenuous world where you walk on stilts, teetering back and forth between heaven and hell, elation and terror, joy and despair. And visualizing what life will be like only gets you in trouble. If you’re too optimistic, you feel like you’re lying to yourself, and if you’re pessimistic, you slip deeper into the stress and worry.
I’m glad I couldn’t tell the new-mommy-me what life with Isaiah would be like. I’m glad because I would be hard-put to describe the intense joy that comes with being Isaiah’s mommy. It would be easier to describe the difficult things because they don’t mean as much.
Isaiah faces more challenges than I can imagine. He was born 10 weeks and one day early. He is missing half of his small intestine and faces a lifetime of loose stool, calorie packing and intestinal issues. He’s missing his right pectoralis muscles, and we don’t know why. He has lung issues. His kidneys are damaged but to what extent we don’t know. His liver basically had to regenerate itself after the damage of high doses of multiple antibiotics that we couldn’t even pronounce. He has developmental delays despite intense interventions.
He lost half of his small intestine when he was two weeks old and got Necrotizing Enterocolitis (NEC), one of the leading causes of fatalities for preemies. When we arrived at the hospital after speeding halfway across the country, our first meeting with the neonatologist included a laundry list of possible complications, which included this swift, sometimes fatal infection. We were days away from the “safe zone” of preemie-hood: the feeding-and-growing stage, where we could finally relax a little, and NEC hit. My husband had gone home to Kansas City to get things ready for Isaiah and to work until he came back six weeks later to take us home. I remember calling him and telling him that Isaiah was going in for emergency surgery and the neonatologist told me, “prepare yourself for the distinct possibility that Isaiah will not survive.”
I spent the hours he was in surgery just saying, “Please, God. Please, God. Please.” Thousands of prayers were raised by family, friends, and friends-of-family-and-friends from across the nation. Isaiah survived and is thriving despite what the growth chart says.
With Isaiah, we have our own definition of “thriving.”
Isaiah hasn’t had a breathing treatment in two winters. Even though we were on strict “preemie lock-down” his first winter, he caught a cough in November that lasted through April, which had us timing four different breathing treatments and observing his breathing hourly. But the past two winters, thanks to the RSV vaccine and vigilant hand washing, he’s breathing well.
Isaiah is no longer our “golden child.” When he was released from the NICU, he was so jaundiced due to liver damage that the whites of his eyes were yellow, and he practically glowed when sunlight hit him. He’s bi-racial, so you’d think that it wouldn’t be that noticeable, but he was so yellow, we called him our “golden boy.” His liver has repaired itself, and his skin is a gorgeous coffee-with-cream color, and his gigantic brown eyes stand out in the pure white.
We haven’t had to take his blood pressure for two years. The first 18 months of his life, Isaiah got “hugs” from his tiny blood pressure cuff while we strained to hear the faint “pop” that told us to record the number on the dial. While his kidneys are damaged, it’s possible that he could live a full life with symptoms of his kidney disease.
Isaiah transitioned out of Missouri’s First Steps to services from our school district’s Early Childhood Center. First Steps and the developmental specialist, dietician, physical therapist and occupational therapist they provided us were a lighthouse in a sea of uncertainty. Parents typically feel some sort of failure, and parents of preemies are tasked with seemingly insurmountable tasks. The strategies of First Steps and the eight appointments a month our Early Childhood Center have provided made raising our Isaiah more joyful and less stressful.
There’s no typical day for us. Probably because Isaiah is only three, and most of the preemie issues he has haven’t worked themselves out yet. Or probably because we’re working through our second adoption, and our second trip to Baltimore to adopt his brother (who happens to be his biological cousin) has thrown Isaiah and his gut for a bit of a loop. Or because, with gut issues, there’s so much involved and so many different symptoms that it’s difficult to tell if the issue is caused by something he ate, the general gut issues or an intestinal bug. We translate all the symptoms we can, and with prayer, vigilance and steel stomachs, we share our stories of flying poop and catching puke with the people who prayed for Isaiah when he was sick and continue to pray for both our sons.
It still surprises me when people ask if our newborn experience with Jonah is better than it was with Isaiah. There’s no better and no worse; it’s just different. The frailty and wonder of life in the NICU is something I appreciate and cherish more than I can say. Watching Isaiah come back from the brink of death was just as miraculous as watching Jonah come into the world and cutting his umbilical cord. As I see my boys together, I know that their lives will be just as different as their birth and adoption stories, but I do know that they’ll be full of the love that hit us like a ton of bricks as we were driving through St. Louis, speeding through the rain so we could be joined as a family.