*Age: 5 * Born at 27 weeks gestation *
On May 18, 2005 my nephew, Aloshua, was born at 27 weeks and 1 day gestation (3 months, 1 week early). He was 3 pounds, 5 ounces and so early I couldn't wrap my mind around it. We'd been through a premature birth before and I'd thought I was prepared, but I wasn't. Because the simple truth is, you just can't prepare for these things.
I will never forget standing beside my sister when they rushed him off to the corner of the room. He cried once, but before we could even wrap our minds around that tiny little sound, he coded. There is nothing more terrifying than listening to a neonatal team start calling out orders, trying to save your little one before he's even had a chance to live.
They rushed him off to NICU before my sister ever got to see him. Her first look at her little boy was through a tiny isolette, with wires shooting off in every direction. His first night was rough. So much so, in fact, that no one even noticed the hole in his back until the next morning.
That morning, we learned that he had spina bifida, needed an oscillator to keep him breathing... and would need to be transferred to another hospital for surgery as soon as he was stable enough to come off the oscillator. By the 21st, we'd learned that he had Arnold Chiari Malformation (ACM), severe lung problems and a hole in his heart. On the 22nd, he had his first surgery. He was only four days old.
Our thoughts during those early days were an absolute blur. Every day it seemed like they told us something else. For every glimmer of good news they gave us, they seemed to have two bits of news that were anything but. When family and friends called, we never knew what to say. We were too busy trying to process it ourselves.
On the 27th, the fluid build up in his lungs was reaching critical levels... and they had to get it addressed quickly. His head was growing so large from hydrocephalus that they were desperate to get him into surgery to place a shunt. They started an entirely new round of drugs. He soon underwent his second surgery to place the shunt.
It went on and on.
We remained in NICU for months, taking one step forward and two steps back time and again.
Finally, in August, he was well enough to come home. We cried. We celebrated.
Bringing him home for the first time was amazing. For 3 months, our lives had consisted of a 120 mile trip each and every day just to spend time with him. For the first time, he was home where he belonged, with the people that loved him and it was amazing.
And then he stopped growing. He ate and ate and ate. All day, every day, he ate. Literally one bottle after another. And still, no growing. By November, it was clear that something was seriously wrong and we went back to the hospital to find out what it was.
His intestines were on the wrong side of his body. He had hernias and a hole in his diaphragm. He needed another surgery. So, he had another surgery. And then another. And another. And we nearly lost him.
He had a staph infection in his shunt and dropped back down to 8 pounds in the neuro ward. He had a drain tube running from his head and hurt constantly. We stayed with him day and night. And he cried day and night. He couldn't lift his head, it'd gotten so big from fluid build-up. Our hearts broke all over again. There was nothing we could do but hold his tiny little hand and play Fur Elise for him. We played it, over and over and over.
While in recovery days later, he coded again. He spent days in a medically induced coma in intensive care, fighting off pneumonia that seemed to have developed overnight. He was so swollen during those days, he didn't even look like the same baby. But somehow, he pulled through it as he always did and got to come home again.
But still, he wasn't growing.
At a year old, it was evident that we could no longer risk waiting for him to start growing on his own. He weighed only 12 pounds and was eating 24 hours a day, 7 days a week via G-Tube. He could not lift his head. He could not sit up. Or hold his own pacifier. He had these huge, serious eyes and this tiny little body. He had a shunt, two revisions, a G-Tube, was on oxygen 24/7, and was in and out of the hospital for lung problems weekly. Something more needed to be done.
He was fitted with a trach shortly after his first birthday. And coded once again. A blood clot had developed in his trachea from surgery and cut off his oxygen supply. An emergency surgery and ventilator later, he was doing okay again. It was far from over for him though. The doctors were no longer confident that he could handle breathing on his own. He would need to be on a ventilator 24/7... and would be unable to come home until he met the weight requirements for a portable ventilator.
Every day for five months straight, we sat at his bedside in the hospital, learning to care for him all over again while we waited for him to grow enough to come home again. We were permanent fixtures in the hospital and he loved having us there. He smiled at us. He played with us. And when we left for the night, he cried. His older brother didn't understand why his brother couldn't come home, and neither did he. Our hearts would break all over again every time we had to leave him there.
Finally, five and a half months of living in the hospital later, he got to come home again. We knew the ventilator, the IPV that he required and the trach inside and out. We could administer meds, change the trach, provide CPR.
When we brought him home that very first time after NICU, we never expected that we would have to undergo medical training just to keep him with us, but we did. Without complaint, we learned everything we needed to know to care for him and the maze of medical equipment that went with him. And it is a maze.
A ventilator. 2 suction machines. Oxygen. An IPV machine. A feeding machine. A pulse-oximeter. Trachs. A stander. A walker. Leg braces. A brown paper grocery bag of medication each and every month. Boxes of urine catheters, of suction catheters, of trach ties, special soaps, drain sponges, blenderized food, feeding bags, syringes... it's enough to require a room of its very own and it is all needed each and every day.
The first year after the ventilator, we had a nurse 24/7. If he went anywhere, it required 2 people. Our lives revolved around his care each and every minute of the day. Therapists, nurses, delivery people, scheduled feedings, medication intakes, catheterizations and more hospital stays than we can count. My husband and I helped my sister with him daily, because no one person could do it alone. Neither could two. Some days during those first two years, we weren't even sure the three of us, and the nurse, could do it. But, he's home with us where he belongs and has been for 3 beautiful years.
His journey is still far from over though. Aloshua is now five years old, and only recently learned to talk. He's had 18 different surgeries with more on the horizon, has speech, occupational and physical therapy five days a week and weighs only 30 pounds. Part of his diaphragm is paralyzed, his lungs are damaged, and his airways are in poor shape. He's been in and out of the hospital since birth, is tube fed, and requires a ventilator each and every night. His immune system is compromised and he may never walk on his own. He knows his medical equipment inside and out, and goes nowhere without it. But, the happy moments outshine the sad by a mile.
Just recently, he told his mom he loved her for the first time. It's a day she will never forget. He loves music, drawing, and Reese's, The smile he gives you when you give him any of the three is blinding. He can out-crawl, out-smirk and out-last anyone. And when he laughs, it's the most significant sound you could ever hear.
People always ask us how we do it. That answer is the same every single time. How could we not? Aloshua's life is far from normal, but it is his life. Despite everything, he's survived, and every milestone he reaches is that much more significant as a result. We don't know what the future holds for Aloshua, but we've been blessed every single day for the last five years. His care is not a burden and it never has been. We were able to bring him home and keep him with us. Not every preemie, or family, is so lucky. The babies that never left the NICU.... those are the ones you never forget.
Aloshua is only one of the reasons I wanted to help put this fundraiser together. There are, quite literally, 20 million more this year alone.