A Tale of Two Babies

I didn't meet my friend Michelle in the conventional way, we didn't go to school together, we weren't introduced by a mutual friend, we didn't play on a sports team together, none of those things. Michelle and I met on a pregnancy forum. There were thousands of girls on this forum, but Michelle, like a few others stood out. Why? Because Michelle and I were two of a small group of first time mothers to be, who were on bedrest with complicated pregnancies, this allowed us to stay up and chat about our fears until the early hours just before dawn. Michelle and I had a lot in common...including pregnancy complications, both were at risk for preterm birth, both had growth restricted babies, problems with blood pressure, on and off bedrest. I'm sure in the course of history people have bonded over odder things. But the similarities didn't end there. Despite having due dates weeks apart, we delivered our babies on the same day, within hours of each other. On April 16th, 2010 Olivia Greener and Asher Cole were born, small, perfect babies, who for the most part seemed healthy despite their beginnings in the womb. Within weeks of being born, it became clear that Asher was a very sick baby boy. By 11 weeks old he was hospitalized for his first major allergic emergency. This hospitalization lead to two very difficult diagnoses. I worried about him all the time, but despite having a sick baby girl of her own, Michelle would stay up late and talk me down. Within a couple months of being born, it became clear that Livy was also a very sick baby. She was tiny for her age, could barely eat anything without being sick, Michelle was forced to strip her own diet down to little more than rice and water to make sure that her baby could safely nurse. So we stayed up nights, chatting about medical food, allergies, projectile vomit, bloody diapers, rashes, breathing issues, babies in pain. Two babies born on the same day, with shockingly similar serious and rare medical problems, one with a diagnosis, one without. As time moved on and the babies traveled toward one years old, physically Asher thrived. Medical food allowed him to become healthy and strong. Meanwhile Livy Love was still a medical mystery. We would share pictures, ones of a giant boy, and ones of a tiny baby girl, who had a full head of hair and was walking. Livy had failure to thrive. As I rejoiced in our health care options and availability of medical food, Michelle and her husband fell into despair. Livy was so small she didn't even make the growth curve. At a year old, she barely fit in 6 month clothing. And still Michelle and I stayed up late at night, worrying about things like "How will we ever make them a birthday cake they can eat for their first birthdays?" One mom wondering if she was watching her baby die, and the other one worried that if she sent her precious boy to daycare, he'd die, it would only take a small mistake. But Asher continued to grow and Livy didn't. She became sicker and sicker. Michelle was worried, I was pretty worried too. How would anyone be able to pick up and move on if Livy didn't make it? I would look at Asher and think "its not right, they've always been the pair" I think of Livy and I think of Asher. Please God, take care of Livy. We what did we do? We shared medical food, calorie adders, recipes. Asher's doctors gave me extra formula and we split the orders, one half stayed in Massachusetts, the other half went almost to the other side of the country. Why? Because I'd had enough. This is what it came down to. One child very healthy despite having a rare and serious medical condition and the other child was dying before our eyes. Why? Because Asher was lucky enough to live in a state that mandated the insurance coverage of medical food for children and Livy was not. Whats the big deal? Couldn't they just buy it? Sure, if they wanted to be homeless, because medical food costs more a month than most people spend on their mortgage and other bills. So Livy did okay for a while, she didn't catch up, but she wasn't losing. It was okay, small steps, and boy that little girl was smart as a whip. Asher had his ups and downs. We would be told if his EE got worse or his weight dropped below a certain percentile he would get a feeding tube....we did not want it. We were readily given services to help Asher, had doctors who investigated further, fought for Asher and took his condition seriously. Michelle was lucky if she could find a doctor that even looked twice at her daughter. She traveled with her little girl, searching for a specialist that would help. And I watched from the other side of the computer and prayed for this little girl, born on the same day as Asher, to a very good friend. One very lucky toddler and one we were watching die. And then poof, one day a specialist listened, Livy was hospitalized immediately and scheduled for the placement of a Gtube, which would allow her to bypass impaired parts of her digestive track and get sorely needed nutrients. All this with no time to spare, because Livy was that sick. Thank you God for listening. Over the next few months, she gained weight, started to look like a toddler, not a talking, walking, smart as hell infant. And there was hope. Meanwhile Asher had his ups and downs and struggled in other ways. So we stayed up late and we chatted about how unfair life could be, how much crap could fall on some people and others lived with "first world problems" that would have been a blessing for either one of us. When things went wrong, we knew where to find each other. I'm still praying for Livy and I know Michelle is praying for Asher. He has his ups and downs, and Livy has hers, although her downs are deeper and scarier, two babies born on the same day, struggling to survive. Very recently Livy has started to fall behind again. She is in pain, unable to sleep well, not growing as well, and has started to have episodes that look like seizures. Looking at the symptoms, specialists have started questioning a disease that very few people know about called Mitocondria Disease. So we pray, because as much as it sucked to get Asher's diagnosis, we knew that if we were careful we could manage it. There are many types of Mito disease, and some of them are terminal. So we continue to pray for Livy, who should have been tested over 18 months ago when she was so sick we weren't sure she'd make it another week or two, like Asher was tested the first time he was hospitalized. We pray for a family who loves their little girl, for a friend, for a beautiful little girl, born on the same day as Asher, sharing the bond of childhood illness, knowing that while I trust that God loves us, I sometimes question the hand he has dealt us. But then I stop and think. Born on the same day, and I know God has brought us together for a reason <3