Monroe, Our Miracle

“While Monroe’s story isn’t the typical NICU story, it’s our story and we share in the same grief, heartache, joy, and love as other NICU parents.

Monroe was born February 9th, 2023 weighing 8 pounds 6 ounces. He was our big healthy baby. Like most babies, they tested Monroe’s bilirubin levels before we were discharged and they told us, “his levels are a little elevated, but we aren’t concerned. We are doing to discharge you, but come back tomorrow and we will draw another bili. 

Being first time parents, we had no idea what to expect so we just followed instructions. The next morning at 2 days old, his total bilirubin levels were a 17. The hospital staff didn’t act concerned and his appointment with his Pediatrician was scheduled for Monday morning 2 days later so we were instructed to follow up with his Dr. and make a game plan from there. 

We had no idea at the time that if an infant’s total bilirubin levels reach a level 30, irreversible brain damage called Kernicterus occurs.

2 days later we follow up with his Dr. He sends us to have Monroe’s bilirubin drawn again around 1:30pm in the afternoon. His pediatrician and the nurses called the lab 5 different times in the afternoon asking for his results and the lab continued to tell them they hadn’t run his test yet and to be patient. Finally over 5 hours later, the lab called the Dr to tell them that Monroe’s total bilirubin levels came back at a 27. 

Our wonderful pediatrician called me at 6pm explaining how dangerous this had become and that we needed to get to the NICU as fast as we could. I will never forget his words. “Kaley, you have 3 minutes to pack a bag. Once you get to the hospital you run and you don’t let anyone stop you. You blow past admissions, you blow by the nursed and you run to the NICU. The NICU team is waiting.” 

My husband I am loaded up as fast as possible and sobbed the entire way to the hospital not knowing what we had in store. Being freshly postpartum, I could hardly walk but I ran as fast as I could tears streaming down my face into the NICU.

Our wonderful nurses acted as quickly as they could to place IVs, leads, and get the phototherapy going. They drew another bili and we waited anxiously for the results to come back. While I sat there feeling completely helpless, the neonatologist called me on a nurse’s phone and explained that he was a 27 around 1 in the afternoon and it’s now past 6pm. If Monroe is a level 30 we have to operate and do a procedure called a Double Volume Exchange Transfusion. They would have to take all of my baby’s blood out of his body twice over in attempts to lower his bilirubin levels and try to prevent permanent brain damage. The Dr. explained that we just wait and pray that his levels aren’t at that level. His last words were, “I hope I don’t meet you tonight but if I do, you will know we have to do the surgery.” 

My husband and I were terrified. 10 minutes later our neonatologist walked in with a massive team of nurses and other drs, saying, “Monroe’s total bilirubin level came back at a 34, we have to operate. Please leave and I will send someone for you once we get going.” 

We felt like the floor fell out beneath us. How had our little baby gotten so sick so quickly? Over the next 5 hours they replaced his blood volume twice over with clean donor blood. My husband and I sat in the corner of this isolation room in the NICU watching in horror as our baby’s blood was slowly replaced and his blood was emptied into a container. Monroe was relaxed with morphine but that didn’t stop him from opening his eyes and wiggling his little head during the procedure. All I could do was sob and pray that his doctors could save my baby.

Once the procedure was finished, our neonatologist informed us we had a journey ahead of us. They were concerned because they had no idea how long he was above a level 30 and had no idea what effect that may have had on his brain. They needed to get his jaundice under control and then we need to do and EEG and an MRI to determine if he had brain damage. 

Over the next week, his bilirubin levels fluctuated significantly and eventually worked their way down to a healthy range. Monroe was placed under 3 intense phototherapy overhead lights and a bili blanket underneath him. It was agony not being able to hold my baby, not even truly being able to touch him. The nurses reluctantly allowed us to hold his little hand under his lights because they needed as much of his skin exposed to the phototherapy as possible. The only time the lights were off was so they could draw another bilirubin to see if we had made any progress. 

Our Angel nurses allowed me to hold him for just a couple minutes while they changed his bedding and I sobbed the entire time just kissing and loving him so hard, willing his tiny body to heal and function properly. I remember being sick with anxiety when they finally turned off his last phototherapy lamp thinking if the lights are off he will get sick all over again. 

The last day of our NICU journey they ran his EEG and MRI. His results came back “clean” but the drs interpreting his results also told us “Kernicterus is so rare that we don’t truthfully know what exactly we are looking for.”

Monroe is now a happy 3 month old. While we won’t know if he suffered any permanent damage from his hyperbilirubinemia, or why his levels spiked so high so fast in the first place. We just relish in the fact that we have him safe in our arms and for now he is happy and healthy. We thank god for everyday we have with him, and learned very quickly as brand new parents not to take a single second for granted.” NICU Mama, Kaley