I am here today to share my son Enzo's story. We are currently in an immense amount of medical debt and any contribution is greatly appreciated. Any support is welcome, even just sharing Enzo’s story with others on social media means the world to us. 100% of all donations will directly be put towards his medical bills.
June 8th, 2020 my son Enzo was born. Within minutes it was apparent that he was struggling to breath and the nurses took him out of the operating room. After being taken to the neonatal intensive care unit he was placed on a non-invasive ventilator and feeding tube. Dealing with this during Covid, only one parent was allowed to be with him at a time which weighed heavy on our hearts. He was given the diagnosis of Transient Tachypnea of the Newborn which is a result of the delay in clearance of fetal lung fluid. After a 5 night stay in the neonatal intensive care unit we were finally able to go home as a family!
June 21st, 2020 I was woken up to my Owlet Smart Sock station alarming. The readings stated that Enzo’s heart rate was 288 bpm (normal for a newborn is 120-160 bpm) and I honestly thought it was a technological malfunction at first. My baby seemed perfectly content and happy, just sound asleep per usual. After making a few phone calls I decided to take him to the nearest pediatric urgent care to air on the side of caution. When we arrived they hooked him up to their vital sign monitor and his heart rate was in fact 288 bpm. Within seconds there was a stretcher in the hallway and my 13 day old baby was being strapped down and whisked away by ambulance. Immediately after walking into the emergency room my son was surrounded by what seemed like hundreds of people. They could not gain intravenous access at first and proceeded with two intraosseous infusion’s (IO) in his Tibia. This allows entry directly into the bone marrow, but unfortunately these were also unsuccessful attempts. Finally an IV was successfully placed in his hand and by this point his heart rate had skyrocketed above 300 bpm. At this point, he was given Adenosine two separate times to stop and reset his heart. Once his heart rate returned to normal and they had him stable, he was transferred into the Pediatric Intensive Care Unit (PICU). Before the day was over his heart had two more episodes in the PICU and had to be stopped / reset once with Adenosine, while the other he was able to come out on his own with the help of ice packs. He was diagnosed with Supraventricular Tachycardia (SVT) and placed on Beta Blockers every 8 hours after we were sent home.
August 15th, 2020 I took Enzo into the emergency room for concerns of him not breathing at times. After observing him for about a week I began to realize a pattern that he would consistently stop breathing throughout the night. His chest would lay motionless for 20, sometimes even 30 seconds long. They admitted him and monitored his vitals overnight and sent us home two days later with no answers.
September of 2020 I started noticing a very distinct stridor and snoring when he would sleep. The breathing seemed to continually be getting worse and his sleep was regressing tremendously. We then took him to an Otolaryngologist who performed a scope on him which resulted in the diagnosis of Laryngomalacia. This results in tissue falling above the vocal cords into the airway when breathing in. After following through with his recommended sleep study, he was diagnosed in December of 2020 with severe Obstructive Sleep Apnea. With this diagnosis we found his breathing stopped at least 20 times an hour while he was asleep. It was then decided that he would need surgery to help remove his obstruction.
In January of 2020 Enzo had his surgery to remove his adenoids and correct his tongue and lip tie. The recovery of this surgery was heartbreaking to watch my son go through. He wanted nothing to do with sucking on a bottle or pacifier and screamed on and off in agony for over a week. After all the pain and trauma his OSA was unresolved and we were back at square one. He was then prescribed inhalers to use twice daily and a CPAP machine to use for naps and night time. Getting a nine month old to wear an entire head gear was rather impossible and the CPAP machine use was also unsuccessful. We now are waiting to receive Enzo’s second surgery to remove the other obstruction. His battle with OSA is nightly. Still to this day Enzo will gasp for air and startle at least 6 times throughout the night. We are holding out hope that our next surgery will lessen the severity of his apneic breathing!
Over the last year Enzo has routinely visited with a Cardiologist, Pulmonologist, Gastroenterologist, Hematologist, Otolaryngologist, Sleep Medicine Doctor, and Feeding Specialist yet fought through it all with joy on his face. His resilience is beyond amazing.
There is far more to tell about Enzo's journey, so if you have any questions please feel free to ask me!
