“I remember the day like it was yesterday. I was full-term and scheduled to be induced at 40 weeks and 4 days. Noah’s nursery was painted and his room was all ready for him to come home. My husband, Josh, and I couldn’t wait to meet our son and introduce him to all of our friends and family. We had waited for this day since we found out I was expecting.
I went into the hospital around 7 p.m. on September 20, 2017. I was hooked up to a fetal heart monitor and they gave me a drug called Cervadil, which they said, ‘will help to soften your cervix and prepare you for labor.’ Within minutes of receiving this medicine, I felt like I was going to pass out. The nurses ran into the room and told us, ‘The baby is not responding well to the drug, and we need to remove it.’ Noah’s heart rate immediately started to drop, and they decided to do an emergency C-section. During the time Noah was in distress, he slowly began swallowing his meconium.
In the operating room, I expected to hear him cry. But when Noah was born, I heard nothing but silence. He was unresponsive. The hospital staff repeatedly attempted to intubate and gain IV access. During these attempts, Noah went without oxygen and consequently, suffered a severe brain injury. His hypoxic event also resulted in restricted blood flow to his kidneys, which caused his body to go into kidney failure.
When Noah was stable enough, he was sent via Life Flight to the Children’s Hospital of Pittsburgh. We were told, ‘Due to his low Apgar scores and the severity of his brain damage, Noah needs to be put on a cooling blanket.’ Cooling blankets are used to help lower the body’s temperature and to freeze brain cells that are on the verge of death. It is protocol for a child to be placed on the cooling blanket within the first 48 hours.
The purpose of this treatment is to give cells the opportunity to regenerate once the body is re-warmed. Noah was very unstable and was constantly suffering through repeated seizures. We didn’t realize until a few days later that Noah’s kidneys had failed.
On September 28, I met Dr. Michael Moritz, a Pediatric Nephrologist at Children’s Hospital of Pittsburgh. At the time, I had no idea what role he would play in Noah’s life. We started discussing Noah’s options and hemodialysis made the most sense. Noah wasn’t stable enough to go down to an operating room for surgery. So, a surgeon inserted a temporary tunneled hemodialysis catheter into Noah’s jugular vein at his bedside. To this day, the dialysis team is still in shock he made it through this first surgery.
Noah started hemodialysis at just 8 days old. The treatments lasted about 4 hours each. He was in so much pain. The doctors had to alternate between morphine and fentanyl to assist in keeping him comfortable. It broke my heart to see him like this, but I would just hold his little hands and read and sing to him for hours. Reading and singing to Noah were ways I could help to soothe my very sick little boy. Today, he still enjoys being read and sung to.
Things started moving in a positive direction and we discussed Peritoneal Dialysis. At 2 months old, Noah underwent another surgery for his PD catheter. The incredible staff at CHP trained me, my husband, and my sister on at-home dialysis. This training was intense and took about 3 weeks before we had learned everything we needed to know to provide Noah with the best possible care.
Noah spent exactly 100 days in the NICU. During this time, he had over 10 surgeries, went into cardiac arrest, had aspiration pneumonia, and overcame five blood infections. The first 14 months of his life were very scary, chaotic, and he was constantly sick. Noah did 12 hours of Peritoneal Dialysis every single night. The PD was necessary but was so draining on his body. He would just lay there all day just staring off into space, cry from being in pain, or vomit from being so nauseous. It was the hardest thing I have ever had to watch.
In October of 2018, we met with Dr. Armando Ganoza, a Pediatric Kidney Transplant Surgeon. Noah had hit 23 pounds, the minimum weight for transplant. Dr. Ganoza discussed the transplant process with us and I started the testing process to determine if I was a match. Weeks later we received the amazing news, ‘You’re a match!’ My kidney would help Noah live a more comfortable life! This news was life-changing and we were beyond thrilled. We even did a photo session to announce, ‘Mommy was a match!’
My sisters and my mother organized a huge benefit with over 300 people. This event gathered our friends and family together to help support our upcoming surgeries. We felt everyone’s support at the event. It meant the world to us to have everyone rallying around us and cheering us on!
On the day of our surgeries, December 11, 2018, every single person I know or who knew of our story, wore green and posted it all over social media with #noahstrong. Again, the amount of support and love we felt was immeasurable.
Both of our surgeries went perfectly. I was discharged the following morning. Noah, however, had to spend over 2 months in the PICU. While there, he battled a lung infection, 19 days of a fever with no known cause, and an infected surgical site. Those 2 months were difficult, but Noah is a fighter, and he proved to everyone how truly STRONG he is.
We are now 24 months post-transplant and our lives are tremendously different! Noah was so sick for the first 14 months of his life, we didn’t even know what his personality was. We lived day to day, working on trying to get him healthy and comfortable. Now, we see how happy he is; he smiles and laughs all day long. He truly brings so much joy to our lives and the lives of everyone that knows him. Noah is now working on standing, something that seemed out of reach for him at this time last year.
We still have a very long journey ahead of us, due to the extent of Noah’s brain injury, but we are so fortunate to be his parents and have him with us. He is a healthier and happier baby than we ever imagined possible. The last 2 years have been very different than what I pictured my life would be, but I am Noah’s mommy and I wouldn’t have it any other way.
I want the world to know how much his kidney transplant changed Noah’s life. I look at the words ‘DONATE LIFE’ now and truly understand the meaning of it… LIFE.
I did that for him, and it was the best thing I have ever done. I knew I had given Noah life when he was born, but giving him my kidney gave him a whole NEW life, one that allows him to play with his cousins, watch Mickey Mouse, go for walks in his stroller, snuggle with his mommy and daddy, watch his aunties dance for him and listen to music — he LOVES music!
Noah’s life has improved significantly since his transplant and I am eternally grateful for the opportunity to have given him the greatest gift of all — life.”
This story was submitted to Love What Matters by Joshua and Jessica Peniazek from Pittsburgh, PA. Follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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