Support Baby Roman James' Medical Journey

Hello! I am trying to help my youngest twin grandson with his medical expenses! Baby Roman James is the youngest twin born at 33 weeks. Baby Roman James is an amazing FOMO baby (fear of missing out), a little adventurer who loves life so much and has the biggest personality found in his tiny body!

Since January 2025, baby Roman James has struggled with massive acid reflux leading to hospitalization, adding medication, and changing to Elecare due to milk and soy allergies. Since then, baby Roman James has struggled to gain weight, eventually leading to having a feeding tube inserted. At this point, the plan is to keep him with it due to feeding issues until he is 1 year plus 7 weeks. At that time, baby Roman James will be reevaluated and possibly kept on longer, determined by how he gains weight when finally

***UPADATE*** 

6/23/25 baby Roman James had a bronchial procedure and they found he had tons of mucous on his vocal cords and lungs, he has a true asthmatic reaction during the surgery, so far they have found he has a lung infection with multiple types of bacteria. He has a bacteria from aspiration during a puking session, STREP in his lungs, and a pseudomona bacteria. The pseudomona is common in children with Cystic Fibrosis, even thiugh thatvis ot what he has, but his bidy sure acts like it. This combination has lead him to be on a long course of 2 major antibiotics which make him very sick, and it was determined he has a weak immune system. Not severely but moderate, only 80 points from being severely weak immune system, which is not a lot. We are mostly likely going to need to isolate him to limited contact. He is going to have a special g tube placed so he will be having surgery either this week or next week at the latest. All of this is on top of his twice a day steroid neb treatments, twice a day chest vibrations, duo nebs quite often. He is the happiest baby I have ever known who just goes with the flow . At this time we are needing more help than ever, as he will be hospitalized a minimum of 3 or more days, with this time of year and weather daddy is not able to take off of work and so whether it’s Grandma or Mommy at the hospital, it’s without pay AND mommy is having surgery herself next week, and will be without pay so we are really asking you to search your hearts we are well aware how tough times are for everyone. 

We do have Amazon wishlist included, it includes different things, that would help if you don’t feel comfortable donating to Gofundme. We also have Cashapp and Venmo. 

Gitcards are great too, Walmart, Target, Costco, or Sam’s club.

***UPDATE***

Baby Roman James pediatric pulmonologist has now ordered a chest vest that vibrates to break up the mucus in his. Best. This is the same type of item that is used in cystic fibrosis patients. Vest is set to arrive soon but insurance is already denying coverage and the cost of the vest is astronomical at $14,000

and if they continue to deny they come take the machine. 

Insurance provides a pump rental but only 23 feeding bags a month, which they require us to rinse. The bags are extremely expensive as they have the auto click to load for the machine, making them impossible to clean sanitarily. Very few medical supplies are also provided, such as the tape for his face and syringes.

Baby Roman James also requires to be on Elecare formula, which only comes in 14.2 oz size and lasts for 2 days. Insurance only provides 12 cans a month, and at the lowest price we can find, it's $48 a can plus tax.

The projection is about another 9 months of necessities are needed. We have talked about buying a simple machine so we can use the normal feeding bags that do not have the click connect on the tubing, making them much easier to clean. A pump is around $1600 plus tax.

We do have an Amazon wishlist on top of trying a GoFundMe,

which we are trying to seek help with too.

Any leftover supplies will be donated to Owen’s Outfitters, which provides free medical supplies donated by companies and families.

Any funds will also go to hospital bills (currently setting at $13,000 not including the appointments, ER visit and 1 day hospitalization) and therapies as baby Roman James has his feeding tube changed a minimum of every 3 weeks, which requires a visit to the Pediatric floor at Avera, with X-rays. He also has regular appointments for pulmonary, GI, Speech, Occupational and several other appointments. On top of that we have at home therapies just short of weekly at home. 

Baby Roman James recently saw his Pulmonary Dr and she wants him to have the chest vibration vest to use twice a day to break up his mucous and we need help coving what insurance is fighting to cover. 

Due to all these appointments, Grandma is very lucky to have some time at work, but that takes away from working overtime to help cover bills. While Mama and Daddy try to help, their jobs are not as flexible so some funds will go things such as gas for appointments. 

Baby Roman James recently had an elbow injury while having to have the most recent feeding tube put back in. It was discovered he has a possible issue with his joints so they are working to set up more appointments. This recent injury led to a full overnight ER visit and 1 day of hospitalization l. 

 

Thank you!