I don't even know where to start with this blog post. I knew this family would be special when the father emailed me and explained that they were excited to have their first family photos taken, but in the next sentence he mentioned that it was because his son Levi had survived a premature birth and was born 1 pound 9 ounces. I could instantly tell that this family had been through a lot. Fast forward a month and I had the greatest joy of meeting Levi and his parents. They touched my heart and seeing the bond between Amanda and Levi at one point brought me to tears. I decided that along with their family photos, I wanted them to share their story, in hopes that maybe it would help another family that is going through something similar, to know that God is good and that he can work miracles! Levi is a sweet soul and a fighter, that I know to be true, but I also know that I could not write about their experiences as well as they could, so here, in Amanda's words, is their story of truimph and joy!
"When my husband and I finally decided to have a baby after 11 years of marriage, we had it all planned. We’re both very big picture and detailed-oriented. We even worked out which month we wanted to conceive, so that I didn’t have to be pregnant in the blistering summer heat. I prepared by reading as many books as I could on what to expect during pregnancy and labor. I followed all the rules: no lunchmeat, no alcohol, no cleansers with salicylic acid, no caffeine,… I even slept on my left side. We planned how we were going to tell our family members, and even designed a T-shirt to announce the pregnancy. And of course, we skipped all optional tests, because after all, we planned for and wanted this baby no matter what.
But what happened at the end of my second trimester could not have been foreseen or planned for.
Levi was born at 28 weeks (almost 3 months early) via emergency C-section. At birth, he weighed only a pound-and-a-half and was 12.5” long—not much larger than a dollar bill. Throughout the pregnancy and birth, we faced many obstacles: from a positive screen for a rare genetic disorder to hydrocephalus due to high level brain bleeds on both sides of his brain and many other complications because of his severe prematurity.
The 95 days we spent in the NICU were quite the rollercoaster. Some days, it seemed that for every step Levi took forward, he took two steps backward. There were days of pure joy—the first time I held his tiny and delicate body a week after he was born. Then, there were days that just broke the soul—when we thought we were in the clear with the genetic disorder and found out that Levi had severe bleeding, swelling and a dead spot in his brain. Joy—when he took his first milk bottle. Heartache—spinal taps, draining fluid from his head, setbacks with oxygen.
Levi underwent three brain surgeries to keep the fluid buildup on his brain from increasing and causing further damage. Each surgery meant a setback on oxygen. Waiting on him to gain weight was like watching a pot of water boil. His due date came and went. That was particularly hard. But the doctors and nurses knew what they were doing. Because we stayed past his due date, Levi didn’t have to come home with any oxygen or monitors.
Leaving the NICU was exhilarating, yet sad. We had become like family with many of the nurses. They not only took care of our little boy; they took care of our family. They fed and bathed Levi and provided a shoulder for us to cry on. But so much more than even that. They sent us photos of Levi when we weren’t there. They took an active interest in Levi’s development. They were in our corner cheering for and encouraging us. Those nurses will always have a special place in our hearts.
Once home, we focused on round-the-clock feedings and physical therapy. Levi caught up in weight for his actual age in less than a year and caught up in length in just over a year!
The rollercoaster ride isn’t over, though. There was another surgery to repair Levi’s hernias. And at 10 months, Levi developed seizures, which we continue to try and find the best way to control. There are still trips to the hospital with overnight stays. But now there are also trips to the beach. And giggles. And snuggles.
We cherish even the tiniest milestones. Each month lived is a reason to celebrate.
Levi is almost a year and a half old now and can sit on his own, he babbles, says “mama” and loves to stand. The physical therapy is helping, and while he is behind on motor skills, we’re very optimistic that he will overcome this like he’s overcome everything else life has thrown at him.
We’re so thankful for the privilege to take care of Levi. He’s an amazing little boy. So happy, so tough. He has taught us a deeper love. Patience. Priorities. He is the brightest spot of every day.
We’re constantly looking for ways to help others though our experience. If you’ve had a preemie or spent time in the NICU, we’ve created a closed support group on Facebook where NICU/preemie parents in Memphis can connect, vent and find encouragement. You can find it here: https://www.facebook.com/groups/197970990669051/."