AYVA – 23 MONTHS OLDRetrun to 22q Stories
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UPDATE as of February 2020
This was written when Ayva was two years old and she is now eight years old. A lot has changed since then. She was exited from speech therapy once she entered Kindergarten. Feeding therapy is also not a part of her life anymore as she now tolerates regular liquids. At the moment, her most prominent and serious 22q symptom is her heart defect. She has now survived three open heart surgeries and four cardiac catheterization procedures. She was our only child for about four years, but is now the proud big sister of our youngest daughter (who was not born with 22q). Ayva is currently one of the younger students in third grade and is in a mainstream classroom with no extra support. This may change as she gets older and as academics become more challenging. As is typical in those with 22q, she does struggle with complex math and reading comprehension. She was diagnosed with ADHD but we are choosing not to medicate at this time and are just working with the teacher to provide appropriate classroom accommodations. Knowing that her 22q puts her at a higher risk for developing mental health issues, that is something that I am always monitoring and keeping on my radar. Reading our story six years later, I was struck by how much things can change. It is impossible to predict how your story is going to unfold. Life is definitely a rollercoaster and none of us are immune to suffering, but I never lose hope, and I always try to embrace, enjoy, and appreciate the journey, even (or especially!) when it’s hard. If you would like to follow her journey, please look for ”Amazing Ayva’s Journey With 22q Deletion Syndrome and Tetralogy of Fallot” on Facebook.
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!