Ella and Eve were born on 12/19/2017 9:32 PM. Mom and Dad were thrilled with their new baby girls.
Ten days after birth, Eve stopped eating and was constantly crying. After speaking with multiple doctors, we decided to bring her into the emergency room. There, her vitals began to drop while many doctors and nurses rushed to stabilize her and save her life. She was quickly admitted to the pediatric intensive care unit and, after several hours and many medications, she was in stable condition.
On January 1, 2018, Eve underwent emergency exploratory surgery on her abdomen where a volvulus was found (a condition where a portion of intestine or bowel is twisted around itself, causing an obstruction). Once found, a portion of her small intestine was removed, with the remaining portions brought to the skin for colostomy and recovery. Many complications arose from surgery, including kidney and liver failure, septic shock, and extremely high blood pressure which caused a moment of cardiac arrest. As a result of all of this, she remained in critical condition with life support for about 10 days. During this time, she was extremely puffy and swollen, with low organ function requiring numerous intravenous medications and nutrition to keep her vital signs stable.
By day 11, her kidneys began to rally and turn the corner, which led to her puffiness and swelling to subside. Days later, after her sister Ella’s diagnosis of Retinoblastoma, Eve was flown via medical transport to a hospital 2 hours away to a Neo natal intensive care unit for continued treatment of her abdomen as well as begin diagnosis and treatment for her retinoblastoma.
Eve’s breathing tube was finally removed on January 23rd and she was able to breathe on her own. After almost a month stay in the NICU, Eve was healed enough for her reconnection surgery, however, we decided to begin chemotherapy as her tumor was rapidly growing. The ostomy bag would have to remain until she would be recovered from chemotherapy and well enough to undergo a reconnection surgery.
Eve was moved from the NICU up to the Oncology floor to undergo 6 months of grueling chemotherapy. This was very hard on Eve. While impatient, she underwent five out of six chemotherapy dosages; multiple IV placement and removal surgeries, countless transfusions of blood and platelets, several ophthalmology exams, several MRI and Ultrasound procedures, all while still recovering from her initial abdomen surgery. Eve struggled for months to increase her feed intake via mouth and by her feeding tube. Her ostomy bag and supplies were another challenge as they were prone to leak and cause skin breakdown which was extremely painful. After she contracted three infections related to her IV and contracted a blood clot, she underwent surgery for a medical-port which reduced her infection risks.
By June, Eve had undergone her fifth chemotherapy dosage and was fully taking her nutrition by mouth / feeding tube. She no longer required background IV nutrition. Her blood clot and ostomy care was under control. After over 5 months in the hospital, Eve was finally healthy enough to be discharged.
It took some time to recover from the chemotherapy as well as maintain a healthy feeding schedule. Eve also had a feeding tube for her first year of life. When Eve finally came home, Mom and Dad had a lot on their hands. They had to learn how to care for twins under the same roof, provide ostomy care for Eve, change her feeding tube, and provide daily medications for both girls. Having twins go through chemotherapy at the same time was very tough and heartbreaking. In the end, Eve and Ella were able to finish their final dosage of chemotherapy together.
In August, Eve finally was well enough to have her intestine reconnection surgery. After a short stay in the hospital, her intestines and bowel were successfully reconnected. Her nutrition intake took a bit to rebound, but she continued to thrive and gain weight. Shortly after, her medical port was removed as it was no longer needed.
Eve currently travels two hours to the hospital for GI treatment, oncology appointments, as well as audiologist appointments. The tumor remains in her eye, but has been stable since chemotherapy. The eye grows until they are age 5, so the chances of new tumors appearing is quite high. This is why both twins need to go for regular check ups which include anesthesia to view the inside of each eye.
Eve was also recently diagnosed with a rare condition known as Auditory Neuropathy. This is also a very rare condition and we unsure of the cause. This means that she can hear us, but the nerve in her ear is not firing properly, so a lot of what she hears can sound distorted. It has been compared to static on a radio. She may need hearing aids or even cochlear implants in the future. Its very hard to tell how well she can hear because she is still too young to tell us. So she has been receiving a lot of hearing tests. We have multiple therapists that come to the home that help Eve to grow, learn, and develop normally. Just within the last month, we were able to remove Eve’s feeding tube. And we are hoping that she will continue to gain weight.
Ella-
Ella was first diagnosed on January 15, 2018 with bilateral Retinoblastoma – one small tumor was found in each of her eyes. She too, would have to travel two hours away for her outpatient care at the same hospital that Eve was inpatient. This hospital specializes in Retinoblastoma. Ella also underwent 6 months of outpatient chemotherapy. This too was very hard on Ella. She was sick a lot of the time and did not want to eat. Ella is down to one tumor, which has been stable since completing chemotherapy. She did have a new tumor arise shortly after chemotherapy. Laser Therapy was used to treat this tumor. Ella also will need to be monitored regularly for new tumors or growth of the existing tumor.
Mom (Maryann) Dad (Nathan)-
All of this has caused a lot of physical, mental, and financial stress on Mom and Dad. Both were unable to return to work full time. Once Eve was inpatient over two hours away from home, we both had to “take turns” traveling to see Eve while the other stayed and cared for Ella. Occasionally, Dad was able to squeeze in a day or two of work. The constant traveling and medical appointments were a major stress on the family. Having Eve come home from the hospital relieved some of the travel stress.
Now, both girls have early intervention therapy sessions at home which keeps everyone busy. Dad has slowly been able to get back to work. Maryann has been unable to return to work as their immune systems remain suppressed for up to one year post chemotherapy. The twins are also not caught up on their vaccinations as chemotherapy has prevented that. Since Maryann is unable to return to work, this a more than cut the family salary in half.
On top of all of this, Eve and Ella also need regular MRIs to monitor for brain tumors. While this is rare, if brain tumors were to be found, the outcome is grim. And we still travel to Philadelphia quite often for each twin to undergo anesthesia to have their eyes examined for new tumors or tumor growth. Since they are still so young, that chance of recurrence it still high.
We love both of them so very much and are hoping for the best!!!
Thank You
