AYVA – 23 MONTHS OLDRetrun to 22q Stories
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After experiencing two previous miscarriages, it was amazing to hear and see my daughter’s heartbeat for the first time on the ultrasound when I was just 5 weeks pregnant. My pregnancy was a breeze and everything appeared to be going well. All prenatal test results came back normal, and I felt great up until I gave birth at 38 weeks. I was even satisfied with how my labor and delivery experience panned out, and Ayva received an almost perfect APGAR score after she was born.
August 12, 2011 turned out to be the best and worst day of my life. After Ayva was taken for more testing, a cardiologist came into the recovery room and informed us that our precious daughter had a heart condition (Tetralogy of Fallot) that would require surgery at around 4-6 months of age. This is news that would be simply unfathomable to any parent, and it was especially that to us as first-time parents. My gynecologist was as shocked and dumbfounded as we were. I had always been healthy and had done everything right during my pregnancy…how could this have happened?
Ayva spent two nights in the NICU where we visited her off and on and then we were told that we could take her home. I remember going to visit her for the first time in the NICU after her birth…examining and touching our miracle, and surprisingly and unexpectedly blurting out “I love her” to my husband. It was just as other parents always say…it is a love like no other, a love which has the power to change your world forever. Despite the bad news, I always tried my best to remain positive and hopeful, and felt blessed and thankful for what I still had. We were lucky that Ayva was a red TET and therefore never experienced any TET spells. Her doctor prescribed Propanolol just to be safe, and we also gave her Zantac for her reflux that was apparent at birth.
At 4 months of age, she had open heart surgery at Texas Children’s Hospital. It was at this time that her chromosomes were checked and we were told that she had DiGeorge Syndrome. It was just a random occurrence, as neither my husband nor I have the condition. It was a huge learning curve that we experienced…not only as first-time parents, but as parents who now needed to educate ourselves about our daughter’s genetic condition, so that we could be aware of any setbacks that we may experience along the way and be as prepared as possible.
Ayva experienced some complications post-surgery, so we were at the hospital for two weeks, and I was there with her every single night. She had her first Christmas there, but at least we got to go home in time for the New Year. At home, I had noticed that her breathing seemed a bit rapid at times. At her post-op check-up, her oxygen saturation level was low and we were readmitted to the hospital for another 2.5 weeks while doctors unsuccessfully tried to pinpoint the reason. During this time, we learned that she was aspirating thin liquids, so she was put on thickened feeds, which she remains on today. With no answers regarding her low oxygen level, we left the hospital and spent a couple of weeks at home with oxygen, with the intention of coming back for a catheterization procedure to have a stent placed in her pulmonary artery. This was a breeze compared to open heart surgery, and we were in the hospital for only a night. Her oxygen levels normalized after her catheterization procedure. She still takes baby aspirin which was prescribed at that time for its anti-clotting properties.
About a year later, she had another catheterization procedure to enlarge her stent. She is now 23 months old and has started speech therapy as she has very few words. She also has an upcoming occupational therapy/feeding evaluation to help address her aspiration issues.
Despite everything that our daughter has endured in her short life, and everything that may come in the future, she never ceases to amaze us with her strength, beauty, and happy, active spirit. Before she was born, I never really felt like I had found my calling, but once she came into this world, I knew that my calling was to be her Mom. Nothing else has ever felt so right and I know I am just where I am supposed to be. She has taught me that life, in and of itself, is a blessing!