30 Days of Brave | Josie

“On January 17th, 2022, I made my way to the hospital completely consumed with excitement to finally meet my sweet baby Jo. I had an uncomplicated pregnancy and took every precaution for my growing baby. My labor was smooth and Josie was born full term. Towards the end of my labor, my nurse positioned me on my side causing the fetal monitoring strip to shift and lose track of Josie’s heart rate. After several minutes of my nurse messing with the monitor, she gave up when she couldn’t find Josie’s heartbeat. She said not to worry and that she’d be back in 15 minutes to drain my bladder and fix the monitor. She never came back. Josie was left unmonitored for the last hour of my labor. Once I started pushing, my medical team ended up taking the monitor off of my stomach entirely. Josie was born beautiful, but silent, with her umbilical cord wrapped tightly around her neck. After two unsuccessful attempts at getting the cord off, they finally did, but it was too late. Josie laid on my chest for 15 more minutes, purple and gurgling, and my cries were dismissed. Once the NICU arrived, they realized just how sick Josie was. Her heart function was decreasing and her oxygen was in the 30s. She was immediately intubated and put on therapeutic hypothermia. 

After being rushed to the NICU, Josie’s medical team realized that her injuries were far too severe and the treatment that she needed was out of their ability to provide. Twelve hours after birth, Josie was picked up by an ambulance in the middle of the night and I was discharged without my baby. Once Josie arrived at a Children’s Hospital 3 hours out from my hometown, she was admitted into the PICU where she was diagnosed with severe Hypoxic Ischemic Encephalopathy, grade 3 intraventricular bilateral brain hemorrhage, 7 electrographic seizures, acute renal failure with tubular necrosis, anemia and thrombocytopenia, acute kidney injury, severe persistent pulmonary hypertension in newborn with acute respiratory failure, severe hyperglycemia, hypokalemia, hypotonia, pulmonary hemorrhage, severe mixed metabolic and respiratory acidosis of newborn, severe coagulopathy, and cardiogenic shock. She was in extreme critical condition and had a grave prognosis. I had a palliative care team, as well as, the hospital’s chapel on my side helping me to navigate through the grief. 

Josie’s body was still not responding after her medical team had exhausted all treatment options for her. Their last option was ECMO. However, due to the severity of Josie’s injuries she was not a good candidate for ECMO and her surgeon feared that she would not survive the procedure. On the flip side, she would also not survive without trying ECMO. All of the odds were against us and I had to make the tough decision to agree to cannulate Josie knowing that she would most likely not survive the procedure. This was the hardest but most absolute best decision that I have ever made in my life. Josie beat the odds and survived the procedure and then continued to surpass mine and her medical team’s expectations. 

Not even a full 24 hours of life, Josie was intubated, on therapeutic hypothermia, ECMO, dialysis, EEG, she was heavily sedated and medically paralyzed. Even after surviving the ECMO procedure, Josie’s prognosis was still very poor and we were all preparing ourselves for the worst. The palliative care team would come in and do arts and crafts with Josie’s little feet and hands and they’d take pictures of her and print them out for me to have. The chapel came in every couple of hours to pray over Josie and provide emotional support for me. Josie’s room was constantly filled with nurses and doctors on stand by ready for the next bad thing to happen. Her room was hot and crowded with several machines causing a loud steady beep and with each beep a nurse would yell out “she’s okay!” and silence the monitor so that I wouldn’t panic. Josie’s room was heavy with grief and pain. I still remember the way her room smelled and the voices and mannerisms of each doctor and nurse I’d meet. The PICU and NICU are two places a parent never wants to be. No matter how long the stay is or how severe the injuries are, it is truly a traumatic and brain altering experience. 

A week after cannulation , Josie was removed from both ECMO and dialysis. She was then moved from the PICU to the NICU where she was extubated on day 17 and I was finally able to hear her cry for the very first time. Shortly after being extubated, Josie was transferred to the mother and baby unit where I was finally able to breastfeed and cuddle her. On February 14th, 2022, I packed my bags and moved out of the Ronald McDonald House and finally got to sign my daughters discharge papers. Walking out of the hospital with Josie in my arms is a moment that I will never forget.

Josie was enrolled into the beads of courage program. Here are just a few things she endured during her PICU/NICU stay that may further help share her story. 

7 days of ECMO and dialysis 

17 days of mechanical ventilation 

3 days of therapeutic hypothermia 

1 day of nitric oxide therapy 

27 blood transfusions 

174 blood drawls 

32 scans 

15 days of TPN

7 seizures

11 days in PICU

10 days in NICU

7 days in mother and baby unit 

Almost 3 years later, Josie is an absolute powerhouse. She walks, talks, eats by mouth, calls me mommy and gives me kisses. She has the goofiest personality and the biggest imagination. She’s smart, funny, beautiful, resilient, happy, but best of all, she’s healthy! Josie is a survivor of many things. She survived ECMO, she survived cardiogenic shock, total organ failure and severe asphyxiation. At the end of 2023, Josie survived a 30 minute long seizure and was diagnosed with epilepsy that has been beautifully controlled by one medication. Josie does not let her diagnosis’s define her and she never has. She reaches her milestones and works harder to get to each and every one of them. She has graduated from all specialists other than neurology! She is nothing short of a miracle and a fighter. She is my testimony!” NICU Mama, Katelynn