Hi everyone, for those who don't know me here my name is Laura. My brother Sean and sister-in-law Krista are in need of your prayers and help. On March 30th, 2025, they were blessed with the birth of their beautiful baby boy, Ryan James. Unfortunately for Ryan, his first four months of life have been difficult with unexpected turns. This post and all medical information on this site have been approved by both of his parents.

Ryan was born premature at 35 weeks gestation. Days after birth, Ryan needed to be transferred to a different hospital with a more equipped NICU due to concerns regarding a possibly enlarged heart. His team of professionals all worked to collaborate and determine what Ryan needs as there were several complications involving his breathing, swallowing and ability to feed. Ryan was diagnosed with an undefined genetic disorder with hypotonia (low muscle tone) further attributing to his difficulties. Ryan ended up needing a feeding tube at 1 month old due to his aspiration and then a fundoplication surgical procedure due to how severe his reflux was. He also was not tolerating larger volumes of feed, which they found he needed a pyloroplasty all at 2 months old. Eventually Ryan was provided with a BiPAP machine to assist with his breathing and sent home with his parents in June.

Only three weeks after he finally came home, he was readmitted to the hospital due to high co2 levels. When they had cardiology asses him with an echo, they found and newly diagnosed him with HCM - hypertrophic cardiomyopathy with significant concentric LVH and severe dynamic LVOT obstruction. Ryan was brought back home, only to be rushed back to the hospital 3 days later via ambulance due to respiratory distress and turning blue. After being readmitted and doing another echo, doctors reported his heart was not improving much. His team recommended that Ryan needs more specialized cardiac care and so he was transferred to Columbia Presbyterian. Ryan is currently there now in the PICU.

While at Columbia, Ryan ended up in septic shock while Sean stayed the night and the team all had to rush in to assist and set up a central line, an a line and start him on a bunch of different medications. A couple days after he needed to be intubated and Ryan was diagnosed with an infection consistent with NEC (necrotizing enterocolitis), which can be life threatening. Thankfully the doctors and nurses were quick to treat and baby Ryan's infection markers were going down, but now he has cellulitis and is receiving treatment for that.

Due to Ryan's respiratory issues, he has not been able to be weaned off his vent settings safely. He also is not tolerating the weaning of his sedation meds without desatting, so this is resulting in him needing a tracheostomy by an ENT. Just like all surgeries, there are risks, but the doctors are optimistic. Once Ryan gets his trach, he will need to be sedated and on paralytics for roughly 7 days because it’s a delicate area and needs to heal properly. He cannot be moving. After those 7 days, they will do a trach change to one that can stay in for a longer period of time. That’s when they’ll start weaning him off meds and down on some settings. Throughout all of this, Ryan's parents have been so strong, asking all the questions and gathering all the information they need so that they can best care for their child. Krista sleeps in a hospital chair bed every night to stay by her son's side. They will be in the hospital roughly 2 or more weeks after surgery. Then, Ryan will have to be transferred to an inpatient rehab. Time there will all be determined on Ryan and the weaning process and getting nursing in place. Ryan will be provided with physical therapy and all related services as needed. From the heart stand point, Ryan's numbers are trending downwards, which is a good update. Once he heals post tracheostomy, his heart can be managed again by medication.

I am writing all of this information to outline the journey of ups and downs, and the feeling of uncertainty, frustration and pain Ryan's parents have been experiencing for the last four months. To see my brother become a father and witness the joy in his eyes, but then to see the sadness has been difficult. I want to do all I can to help. The greatest want/need right now, above all else, is for baby Ryan to continue to grow stronger and come home. He is such a strong and resilient baby boy. Given his situation and how hard it is to find nursing, his mother may not be able to return to her job; therefore, my brother would be the sole provider for their family. The rehab facility will also be out of town due to limited availability, so more time away from home. With medical costs and a lowered monthly income, any support big or small is appreciated. If you are able, please help to support them in this long journey. Please share and continue to pray for Ryan James.