Rachel Bella Cruz Vs Trisomy 13
As much as it hurts me to ask and relive these moments and everything our family is going to through at the moment it is something we beleive may help. Our daughter was born June 9th 2016. After a few minor complications after birth she and my girlfriend were discharged from California Hospital. Although a few abnormalities were visible there was no need for her to be taken to the NICU. On Rachel's first doctor visit she was refrerred back to the ER at California due to a very high level of Jaundice (22.1). After immediately being admitted to NICU there she was also tested for what the doctor advised us may be a chromosone or genetic syndrome. The following day after being heartbroken and not being able to take our daughter home we noticed she was taken of the lights. Her Jaundice had lowered but doctors asked if they could talk to us privately regarding the testing that was done prior to us leaving the hospital and more tests ran. Rachel was diagnosed with Trisomy 13. I knew it was bad enough she was diagnosed with a syndrome and it took a few hours to realize our daughter is not going to thrive as most newborns,infants do. After doing my own research I have come to the conclusion that only a miracle from God would cure my daughter as there is no known cure. 90% of infants diagnosed with this syndrome do not make it past there 1st year of life. As you con only imagine we are completely heartbroken but have faith that God will allow of to have her with us until he calls for his Angel back.
The reason I am asking for help is because as of yesterday I am now on FMAL. My vacation is finished and as much as I want to go back to work I want to work with the medical staff in helping Rachel eat so we can avoid a surgical Gtube on her. The money will be used for medical purposes along with what we expect will be many doctor visits in the near future upon her discharge, Today is Rachel's 10th day in the NICU and I can only pray it is one of her last there. We can't wait for her to come home! We love you Baby Rachel Bella Cruz.
I have created a page for all whom wish to see the updates and pictures of our Rachel Bella Cruz and the tough journey we are embarking on,.
https://www.facebook.com/groups/1081462935259807/?ref=bookmarks