Valentina's Journey Continues

My name is Virginia and I am Valentina's grandmother.  With the permission of Valentina's mother, Jasmin, I created this fundraiser to assist with Valentina's needs such as a medically equipped van for transportation and to establish a more suitable home for her specific requirements. Below is Valentina's story told by her mom:

      Valentina Rose was born at NYU Winthrop on January 24, 2018 weighing 1 lb. 4 oz. This beautiful little girl entered the world at 8:47 pm with a fighting spirit as she let out the tiniest little cry just before being intubated. She was instantly diagnosed with a congenital heart defect (Tetralogy of Fallot), a bilateral cleft lip, and cleft palate.  Due to such an early birth, she had developed a brain bleed with hydrocephalus that has now resulted in a Traumatic brain injury and a seizure disorder.  Another result from such an early birth was that her lungs were very underdeveloped resulting in a chronic lung disease.  We knew we were going to face several surgeries and instantly started praying and reaching out to all prayer warriors. In February 2018, Valentina became very ill and she underwent surgery due to developing NEC.  Necrotizing Enterocolitis (NEC) is an intestinal disease of premature infants. NEC caused her to have a bowel perforation that made her septic. She underwent 4 bedside surgeries back to back. Her surgeon was able to preserve only 7 cm. of her small intestine which was brought to an ileostomy. Due to such a large amount of intestine removed, she is now diagnosed with Short Bowel Syndrome.  We eventually exhausted all options of care at her birth hospital in which she was then transferred to Morgan Stanley Children's Hospital of NY.  In May 2018, shortly after transferring to the new hospital, Valentina underwent surgery to take down her ileostomy, reconnect her small and large intestine, insert a G tube, and insert a broviac port into her chest.  After the procedure, she managed to grow gracefully with the help of her broviac port that ran TPN into her system, and her feeding tube for small feeds.  In June 2018, Valentina's heart defect started to show signs of struggle. She underwent a 6 hour open heart surgery which was successful.  A few months went by that allowed her to grow and heal from all the previous surgeries. In December 2018, Valentina had reached a point of respiratory distress, and we knew we would have to face a tough decision.  Since Valentina was looking at a future where she was going to require respiratory assistance, she underwent surgery to receive her tracheostomy. After this, she was able to breathe much easier with the help from a ventilator and oxygen.  After this procedure, she became much more stable and we were finally able to bring her home for the first time in March 2019 at the age of 1 yr and 2 months.  As exciting as it was bringing Valentina home, it was a lot of trial and error.  Since her immune system was so compromised, we took many trips to the hospital.  We have managed to stay COVID free and out of the hospital for the year 2020 until recently when Valentina gave the entire family a big scare.  She went into cardiac arrest and had to be rushed to the hospital.  By the grace of God, she is safe and stable although the cause is still unknown.  I am beyond grateful for the team at East Brentwood Fire Dept for working together with the Stony Brook Children's Hospital in keeping Valentina safe and always trying to assist us in more ways than one.  We are one week into this admission and praying to be able to safely discharged home soon.  It is never said that parenthood would be easy, but most definitely hard when being the parent to a disabled child.  Life is a roller coaster of highs and lows and a constant whirlwind of emotions.  As time goes by and Valentina continues to grow, we notice changes that need to be done to accommodate her needs. For example, transportation has been a big struggle for us.  Ambulance transportation is a requirement for doctors appointments but what about a normal trip to the park or to a family gathering? She is in need of a larger vehicle that can be modified to fit all her medical equipment. Something like this would make getting her out of the home much easier, and also plays a big part in giving her a better quality of life. It had also been brought to our attention that living on the second floor and having two flights of stairs is a hazard.  It is also an inconvenience being I cannot carry Valentina, her ventilator, and an oxygen tank alone on days I do not have a nurse.

     If you have read thus far, I thank you for your interest in Valentina's story.  She has defied all odds on many occasions and has truly proven to be a miracle.  Any and all donations are greatly appreciated.  Her story continues with God by our side and we shall walk in faith not in fear.
   I will praise thee; for I am fearfully and wonderfully made. Psalm 139:14