Raelynn’s NICU journey.

Hello, My name is Saabirah and I am here on behalf of my sister, brother in law, and my beautiful niece Raelynn. As my sister is dealing with a lot right now, her family could use help; prayers are the first thing we are asking for.

It is with great heartache to share this story of my niece Raelynn Rue, whom we pray gets a chance at life.

Mom’s pregnancy was going so well, up until her second prenatal appointment, on October 24, 2023, at 35 weeks, when she found out she had to have an emergency c section, (her third c section)due to fluid build up in the womb and in baby. Raelynn was then diagnosed with a rare condition of hydrops fetalis. From the moment she came, silence, no crying, just straight to the NICU to try and save her. During her first week in the NICU of Piedmont hospital, she had to get transferred to a more resourceful hospital at CHOA. The rollercoaster this journey had in place, no parent can prepare for.

First understanding what this rare condition was took much research and a lot of resources. We normally urine out extra fluid and it runs through our bloodstream. For Raelynn, her fluid would get stuck in her tissues and around/in her lungs and heart. She would get so full of fluid that she would become unrecognizable at times.

She had very few promising weeks that had mom and dad very hopeful they would be taking Raelynn home soon, or even just get to see her smile one time or even to hear her little voice cry; But that never happened. Still with prayer and faith, mom and dad continue to be by Raelynn’s side. With 3 other girls at home, twin 5 year olds and a 2 year old, mom and dad make a way to be bedside every night.

The long days trying to find the underlying condition that caused the hydrops was even more detrimental. Doctors found out that Raelynn’s lymphatic system was causing the leakage of fluid that leaks in her tissues instead of through her blood stream. Raelynn then went on a very strong chemotherapy drug called repamycin, (that at the time doctors did not make parents aware that is was a chemotherapy drug) at only 2 months old, having to be on a chemotherapy drug like that caused extreme risk of infection at the time we never knew would take a turn for the worst.

Although Raelynn reacted very well the first few weeks of the medication and showed much promise of being at her “dry” weight, which is when all the fluid is off of her and looking like herself, she was at her dry weight for as long as almost 2 weeks. The most relief we have seen on Raelynn in all her time here. That was shortly taken away after she caught a blood stream infection that caused her BP to get extremely low, and all other stats sadly followed. She began to blister all over her body and her blood count begun dropping so low that no platelets are in place to stop the blood from easily surfacing. Raelynn is now unrecognizable. With blisters and skin stretching as far as it can take, Doctors are beginning to lose faith in Raelynn. We know that GOD has the last say so and we are still witnessing mom and dad be bedside for as long as Raelynn can hold on.

In these times, mom and dad has had to go from working full time to part time to be able to be here with Raelynn every step of the way. The hospital is over an hour away and with commuting and having to be away from home days at time, we are first asking for PRAYERS as well as asking for any donations that will allow them to prepare for whatever the future will play out to be. Raelynn is fighting a fight that no baby should ever have to experience and with your help, it will allow parents to be by her side without having to have a financial burden.

PS. Out of respect of the family wishes, they will like for Raelynn to be seen at her best as it is no at easy sight to see while edemisis.

UPDATE: Thank you everyone for your prayers, shares, and donations. It saddens us to announce our sweet Raelynn has returned to Allah. Being so sudden, we are continuing to do what we can for us at this time. Raelynn will truly be missed and always loved.