Ava spent the first 63 days of her life in the NICU, as a little heart warrior, fighting for her life. Today, Ava is an adorable little princess, delighting everyone with her sweet smile. This story is a celebration of her victory over those first battles, and the battles she continues to face.
At five months pregnant, Ava’s mom, Mikki, learned Ava had a congenital heart defect (CHD). Two weeks later, Mikki found that the heart condition was much more severe than initially thought. When taking a class about her daughter’s upcoming stay in the NICU, Mikki’s water broke. She spent the next 32 days in the hospital, on bedrest, until Ava was born at 33 weeks. The cause of her heart defect was determined at about one week old. Ava was diagnosed with 22.q.11 chromosome deletion (DiGeorge Syndrome), “the most common, uncommon syndrome”. Ava struggled with feeding and sleeping issues, as she fought to gain enough weight to have her first heart surgery at one month old. Ava continued to deal with feeding and sleeping concerns, trying to gain weight, for another month after her surgery. At 2 months old, Ava was discharged to go home. Staff from the hospital gave her mom a pamphlet about ECI (Early Childhood Intervention), which Mikki dismissed at first.
Ava’s first few months at home were a difficult physical and mental adjustment for her whole family. An autoimmune condition was revealed, which meant Ava was not strong enough to receive immunizations, and needed to be separated from her 3-year-old sister. Her pediatrician also followed up on the hospital’s suggestion, and recommended ECI. At six months old, Easter Seals Greater Houston started providing ECI services. Ava received PT (Physical Therapy), OT (Occupational Therapy), SST (Specialized Skills Training), and Case Management. Nutrition was added for two months due to Ava needing to gain weight for a second surgery, which Ava was able to have at 8 months old. Even though the surgery was considered “a full repair”, she will need more surgeries when she’s older, as her heart grows, for maintenance and additional repairs. According to her mom, after the second surgery, “we came home with a new baby”. Ava had more energy, and overcame her eating and sleeping struggles. With her new-found energy and ECI’s therapy sessions, “everything fell into place”.
Ava started to crawl at one year old and mom states, “she was the fastest crawling baby I ever saw in my life”. She walked at 25 months old and developed her hand (fine motor) skills. Aided by SMOs (Supra-malleolar orthosis), which give her stability needed as a late walker, Ava now runs! Ava communicates by pointing, showing what she wants, and using about 30 signs. “Ava has no problem getting her needs known. She’s following her own road, doing milestones in the right progression.” In the fall, Ava will attend the PPCD class with Montgomery ISD, and continue to receive PT and OT services, as well as adding Speech Therapy services from Easter Seals ECI Program.
When asked about how Easter Seals Early Childhood Intervention helped, Mikki reported: “I didn’t know what to do before ECI. They guided me through her condition and what needed to be done first. Every therapy was building on what needed to happen next. ECI also encouraged her big sister to participate. The therapists gave ideas on how to incorporate the two girls to do daily activities together, and how to make one-on-one time with her big sister. I couldn’t have done it without them.”
Her mom added: “Thinking that Ava would need therapy was hard for me to accept, but God gave me this child, and it was my job to give her what she needed to be successful. Ava’s an amazing, sweet little girl, who has taught me so much. They call heart babies ‘heart warriors’ because they fight battles they don’t even know they have to fight.” Ava truly is, the perfect combination of warrior and princess.
It has now been four months of #StayAtHome. That is around the same amount of time your baby/toddler reaches new milestones. Are you keeping a checklist? Are you watching for the next great milestone reached? Your baby, who might have been five months at the start of #StayAtHome, now at nine months should be standing while holding on, can get into sitting position, sits without support, pulls to stand and crawls.
Learn more about our Make The First Five Count Campaign and how to ensure your child is meeting their milestones.
Easter Seals Greater Houston’s ECI Program is still providing all services via tele-therapy including evaluations. Call Alicia at 713.838.9050 ext. 385 to schedule a free evaluation and to check on your child’s milestones.