Avaree's NICU Journey

Avaree is three months old now and she is by far the strongest person I have ever met.Avaree’s medical journey started out while she was still in utero. When I was just 13 weeks pregnant with Avaree I learned that there was a high probability that she would have T21 (Down Syndrome). Not knowing anyone with T21 and not knowing anything about T21, I was terrified. Little did I know that accepting that my child had an extra chromosome would be the easiest part of the rest of our journey up to this point. Six weeks after learning about Avaree’s extra chromosome, I went to my first appointment with the Maternal Fetal Medicine Specialist and I learned that Avaree had an AV Canal heart defect. Again not knowing anyone with this type of Heart Defect or not knowing anything about this type of Heart Defect made me terrified. All I could do is read, ask questions, learn and pray to God for the best. Soon I started seeing a Pediatric Cardiologist and even a Cardio Thoracic Surgeon. Both reassured me that my child’s heart defect was number 1-most likely because of her extra chromosome and number 2-the better case scenario for a heart defect. I was told over and over again that T21 babies are incredibly strong and resilient and that my baby would be born and come home and we would plan her heart repair about 6-7 months after her birth. Up until this point preparing for my child’s Open Heart Surgery was the biggest mountain we had to climb.By 30 weeks pregnant the only soft markers my child had for T21 was the positive progenity blood test at 13 weeks (which has had a false positive result for some) and an AV Canal Defect detected through ultrasound. So again I was at my Maternal Fetal Medicine Specialist appointment and I asked the ultra sound technician why my babies abdomen size was significantly larger than the rest of her anatomy measurements. The technician calls in the Dr. and at that point the Dr. asks her to check a blood vessel in my babies brain and she also looked more closely at my child’s liver. So tying both of these things together my Dr. tells me that my baby has a large liver because she has fetal anemia which is another consequence to the extra chromosome she has. From that point on I was prepared with steroids and magnesium for my babies heart and lung development in case I needed to deliver early. Six weeks later at the end of my 36th week of pregnancy the Maternal Fetal Medicine Specialist sent me to deliver my baby via emergency c-section. That day as they did my ultrasound scan they feared that my child had developed leukemia. At 10pm on November 9, 2016 Avaree Grace Perez was born, 6 pounds and 5 ounces and 19.5 inches long. Avaree was very sick but I was told that she was feisty as could be and she was going to be ok. The very next day an oncologist ordered a blood study to determine if Avaree indeed had leukemia. Test results returned and Avaree did not have full blown leukemia but instead had a transient form of it called Transient Myloproliferative Disorder (TMD). Given the term transient gave us a little more ease. We were told that most times with this disorder babies are treated with a low dose of chemo and that would be it. Unfortunately in Avaree’s case the low dose chemo she received made her disorder better but did not completely get rid of it. In addition to her TMD we also battled her heart defect, her large liver and spleen and blood and platelet issues related to her Transient Myloporliferative Disorder. Due to the TMD Avaree has received numerous blood product transfusions including Red blood cells, platelets, cryo and plasma.Just 2 weeks after Avaree was born she went into heart failure and her Neonatologist started looking at options to transfer her to another hospital for higher level of care and to repair her heart. On December 8th the day before Avaree turned one month old we were transferred to Texas Children’s Hospital via the Kangaroo Crew airplane. Avaree and I were now five hours from our home and our family. I was told we would come to TCH and repair my babies heart and we would return home. Never ever was I told there was a chance for anything different.Today marks over two months that my Avaree and I have been at TCH. We came for her heart repair and within two weeks of being here heart was in better shape and from a cardiac stance we are still waiting for her heart repair. Unfortunately that wasn’t it for my Avaree though. While being here at TCH Avaree received a second round of chemo that has pretty much taken care of the blast cells in her blood. However, now we are facing an even bigger battle. Eighteen days ago Avaree went into liver and kidney failure due to Ascites. At this point this is what we are facing. On top of that the added stress of being away from our home and our family. Avaree has her father, two sisters and a brother at home who come to see her as much as possible. At this point I have been out of work for close to 100 days. Life and bills are catching up! I am not sure what our near future holds because Avaree’s health changes day to day. I couldn’t predict how long we will be here but we definitely would appreciate any help that could be offered.