After a high risk pregnancy and weekly ultrasounds Jazmin was born on July 25, 2009. Jazmin had aspirated mirconium and was deep suctioned for two hours. She was hypothermic and was put into a warmer. We were sent home after the standard two days event though Jazmin had edema. After a week of having her home she started vomiting. On August 16th after a rapid decline and continuous projectile vomiting we brought her to the pediatrician. We were then transferred to Albany Medical Center by ambulance. They found that Jazmin had pyloric stenosis (closing between the stomach and small intestine) After labs were run they found she was losing her protein out in her urine. She was admitted. August 17th Jazmin was diagnosed with Congenital Nephrotic Syndrome and transferred to Boston Childrens Hospital. Jazmin was operated on and spent 1 month trying to get a steady drug regiment for her malfunctioning kidneys and trying to comprehend everything that was wrong with our daughter. We were then transferred on September 16 back to Albany Medical Center where she stayed for three months. After two weeks of being in Albany Jazmin started projectile vomiting yet again. In that time Jazmin was swabbed three times for the flu, had a line infection, two ear infections, and had clots in her line. Jazmin had and Upper GI and was diagnosed with esophageal reflux after that she had a bowel emptying study and started on three different medications. The vomiting persisted and she had an endoscopy done they found that she had a hiatal hernia and needed an G-tube for her feedings.

We were transferred back to Boston Childen’s Hospital for her G-tube placement and have been here ever since. Jazmin’s kidney removal was the 21st of January and we just started dialysis yesterday. Jazmin also has a vitamin D deficiency, calcium deficiency,anemia, hypothyroidism, and potassium deficiency. We are going to be learning how to do her dialysis at home because she will need to be on the machine all night every night. We will also have her on the feeding tube for 20 hours a day. We will be administering all of her medication and be giving her epogen injection for her anemia. We will be tested on February 2nd to see if we are possible donors. It will be 6 months to a year before Jazmin will get a kidney transplant. Once we are home we will have to come back to Boston every month for check ups. It is a long hard road.

You never think that it will be you and then one day your world comes crashing down all around you. My fiance and I have two girls our daughter Reagan who is only 19 months old and Jazmin who has spent most of her life in the hospital. We struggle to keep everything we have worked for. We struggle everyday to keep our family together. It is very hard to give stability to Reagan while traveling between hospitals for Jazmin. Our hearts break looking over our daughters crib and knowing there is nothing we can do to. Our daughter is a fighter and has yet to give up. Jazmin fights the ultimate fight, a fight for her life. The hospital is all she knows and it is harder for us to deal with because we know what she is going through. Our family and friends have become doctors, nurses, and other parents in the struggle. You know your children is loved when nurses travel 3 1/2 hours to see your daughter after she was transferred. As terrible as this situation is and the fear of losing our daughter it is one of the most eye opening experiences a person can have.

I know that it sounds insane but hospitalization and facing mortality changes you in ways you could never imagine. You develop compassion and understanding that you never had before. You appreciate life and stop taking for granted things like going to the bathroom and breathing. You are reminded that we are all the same, illness has no color, no race, and no religion. We all share one commonality and that is our love, strength, and struggle for our children. We try to stay as strong and positive as we can for our daughter because the stronger we are the stronger she gets but sometime it gets hard to smile.