Help baby James come home!

Little baby James was born on July 30th, 2021. He was born with a congenital heart disease called atrioventricular septal defect or otherwise known as (AVSD) as well as a genetic abnormality on his fourth chromosome. Upon his arrival we expected a NICU stay based on his heart defect of about 2-6 weeks; however, nothing could be said for sure until he made his arrival. We were unprepared for the long journey ahead with many ups and downs along the way.

AVSD requires a open heart repair between 4-6 months of age and we believed that would be the only surgery little James would undergo. On September 28th during a heart catheter procedure they discovered he had a coarctation of his aorta, a pretty significant narrowing of the aorta that would require surgery as well. On September 29th, 2021 James had his first of two heart surgeries. On the table after closing him up they rolled him from his side onto his back to wheel him out of surgery when his body went into shock and he needed cpr for 15 minutes to resuscitate him. This event caused James to develop seizures that are currently being treated with medicine.

When he arrived we very quickly learned that he could not breath on his own. After many attempts to ween him from intubation to cpap to free flow we finally made the hard decision that his lungs were just too sick to do what they needed to do without help, and he received a tracheotomy tube placement at 2.5 months old. This tube requires a ventilator to be connected to him at all times so his oxygen levels stay in the safe zone.

James requires a lot of medical care around the clock from trach cleanings, feeding through a tube in his nose, seizure watch, and overall just eyes and ears on him to make sure he is safe. The doctors want him to go home with a in-home nurse care plan. We currently are living in a two bedroom apartment with a toddler on the third floor. The doctors believe that if he were to code or an emergent situation were to happen it is unsafe for him to be all the way on the third floor with all the equipment needed for his everyday life. In order for little James to come home we need to move out of our apartment and into one on the ground floor if available or if none are available find another place that would work better for his care. I recently went back to work because my maternity leave was over and the bills just keep coming. I am only working part time and my fiancé is working full time. The ongoing financial stress this has put our family through these past three months has been very difficult. When he is FINALLY able to come home both of us would want to take some time off of work to spend quality time with our son in our home and learn routines and get him situated and transitioned nicely before returning back to work. Any donations would be used firstly to make the move into a better situated living space for him to come home, and after the move we would use them to be able to pay our bills while we get to spend time with our family in the comfort of our home and not a hospital room. This would alleviate the stress of making ends meet and having to rush back to work in order to do so. All donations are greatly appreciated, absolutely anything helps! I Thank you in advance for the service to our family in rough times ❤️