Mason’s Story

O Warrior Stories

Written by: The Brumley Family

Where it all begins!

Pregnancy
Our family's journey began in March when I found out I was pregnant. At 6 weeks complications have begun. I was showing signs of a miscarriage & was admitted to the ER. I was told I had a subchorionic hemorrhage (bleeding of the placenta) and that my pregnancy was considered a “Threatened Miscarriage” due to extremely low HCG levels. At 12 weeks Mason was diagnosed with an omphalocele. Due to this diagnosis we were transferred to Advocate Lutheran General since they had a level 3 NICU.

Our first appointment at LGH we did an amniocentesis test and extensive genetics testing. Thankfully our results came back negative, which meant we had an isolated omphalocele. From 18 to 34 weeks we had endless checkups with multiple doctors. During that time we found out his abdomen size was at the 0 percentile. His omphalocele was now categorized as “Giant”, containing his liver and intestines. Around 27-28 weeks his abdomen was not growing as it should, so our MFM doctor began to doubt the likeliness of our son surviving. The doctor said, “babies at this size rarely have the chance at life”. I didn’t care what the doctor said, I knew my baby would make it. At 33/34 weeks, my blood pressure started spiking at dangerous levels so I was admitted in-patient and bed-ridden until my scheduled c-section at 37 weeks. I spent 4 long days there until my blood pressure rose to stroke level.I was given 2 medications to help lower it which didn’t help. I was told I had developed severe preeclampsia and immediately put on a magnesium drip. We had to do a STAT c section at that moment. Mason required resuscitation at birth but we did hear him cry after a few minutes. The nurses brought Mason over so I could see him for a split second. I told dad to go stay with Mason because I was more concerned for him than myself. I was unable to leave the room until I completed 24 hours of being on the mag drip. At 4am the next day I was finally able to be wheeled over to the NICU to meet our beautiful son.

NICU Stay
Mason stayed in the nicu for 321 days. Yes, 321 days. It was not easy, especially during the COVID-19 Pandemic. Mason started off on a high flow cannula as well as an Nasogastric feeding tube. During this time we were informed of new various diagnoses. He had a large “ASD” (atrial septal defect), PPHN (Persistent pulmonary hypertension), as well as pulmonary edema (fluid in lungs). With all of this going on, Mason seemed stable. Sadly, things took a turn for the worst. Throughout Mason's stay we had to see him get resuscitated & intubated multiple times. He was put on a ventilator & oscillator multiple times as well with no treatments. Mason had a broviac & PICC line due to him not tolerating NG feeds. Due to feed issues a NJ (nasal-jejunial) feeding tube was placed & he was put on 50:50 broken down formula. Mason had an inguinal hernia repair which is common with giant omphaloceles. During his intubations, he was heavily sedated to keep him calm & refrain him from ripping the tube out of his mouth. It was too difficult to see our beloved baby in this state. As a result of that, we eventually decided to trach our son.

Discharge
Mason was discharged on September 1st 2022. We loaded up Mason into the stroller with all of his equipment. Everyone was taking pictures of us walking out of the unit. As soon as we entered the hallway that leads us out, the whole NICU staff were singing a farewell song for us. It crushed us, they did such an amazing job, and we were all in tears. I can personally say that if it wasn't for the wonderful staff that LGH has, we wouldn't be where we are today. There are too many names to name but they all know they have a special place in our hearts.

Home
Mason has been home for a year & a half now. Mason recently underwent his Giant Omphalocele Repair at Luries Children’s Hospital. Our surgeon was amazed by how well the surgery went. No mesh or botox were used & a G-Tube was placed since Mason is still not eating by mouth. Mason spent 11 days, 4 in a medically induced coma. Today he is off the ventilator for all waking hours. We’re at the home stretch. The last step is decannulation & Mason will have finally overcome his condition. We are just going day by day and are trying to make up for all the lost time during the NICU stay