Thank you so much for all your well-wishes and messages of love for Ava and our family. We are so grateful. We are sorry we have been unable to respond to all of the messages. As many of you know, the last six months for us has been unexpected, overwhelming, and at many times scary, with Ava being in and out of the hospital.
We felt that creating this blog would help with updating friends and family on Ava and her health. We also felt that by having this central place to share our story, we could share more detailed information on Ava’s heart condition and health history, to give our loved ones a more full story on what has been going on over the last 6 months.
Our little Ava Ann was diagnosed late of congenital heart disease, involving a ventricular septal defect, aortic septal defect, interrupted aortic arch, and patent PDA. Doctors were amazed with her case because of how rare it was that her body compensated with this for 3 months of life. Ava was diagnosed with DiGeorge Syndrome, also known as 22q11, a deleted chromosome abnormality. This diagnoses happened while Ava was in ICU, not during birth or utero. Ava had open heart surgery on November 27, 2017 and was very sick in cardiac ICU with pulmonary hypertension, needing her body to be paralyzed in order to survive. She was ventilated and sedated for a month. She had a paralyzed left vocal cord and trachea malasia. She was discharged January 5, 2018, and came home with an NG tube and an extensive weaning withdrawal medication protocol to follow. Follow up appointments were 2-3 times a week at the Stollery.
Ava was also born with anal stenosis, anal rectal malformation which she had surgery for on April 16, 2018. The incision did not heal, and completely dehiscence opened. She then needed emergency surgery on April 24 for creation of an ostomy and debridement of her perineum.
To date, we are currently still admitted at the Stollery. We are trying to keep her incisional wound to her perneium as dry as possible, for healing to start. This involves dressing changes, a continual catheter, and pain medications. Ava is tolerating very well, and continues to smile, kick her legs, reach for her toes, and rolls side to side.
I had a very healthy pregnancy, and there was no indication of anything out of the ordinary at any stage- all test results and such did not show any signs. As mentioned earlier, when we brought Ava home from the hospital after being born, we were unaware of any of these diagnosis’ or complications.
Perhaps this goes without saying, but we now want to leave behind questions of why or how – having our beautiful little girl in our arms now, we need to focus on our journey going forward.
With that said, in the past few months, we have been on a difficult roller coaster of emotions. As I’m sure you can imagine, for Landon and I, there is a lot to process and we are adapting and adjusting to something different than what we expected. As we work through these emotions and feelings, we will be looking to draw on your love and positive support.
One of the hardest things has been to think about how to share this news with everyone. We are so fortunate to have many amazing people in our lives – dear friends and family. We have chosen to write this blog post, and we would ask you to help us by sharing the information with other friends and family as we know people may ask and be wondering how we are doing. We don’t mind you forwarding this exact post to family or friends that may have been missed. It’s simply a bit too much to take on to call and text everyone, and it’s certainly a bit much for a Facebook update, so we have chosen this route. Thank you for helping us in this.
A lot of Ava’s friends and family have been asking how they can help during this stressful and emotional time, being re-admitted back in the hospital. My sister, Victoria, will share a post shortly on the blog, on ways you can help if interested. Just everyone’s amazing wishes, prayers, and messages have meant so much, and we thank you all.
The most important thing is for all you all to know is that despite all we are going though, Ava is also just doing all the things that a 8 month baby does – sleeping, eating, digesting, kicking, laughing, and starting to say “mum”.
Our family is growing in ways we hadn’t imagined, and we are facing some challenges we did not expect. But, we have a very loved little baby girl and we know that she will be so supported and loved in her journey through life with us. We hope and ask that we can draw on your love and support as we face anything that may come. We are grateful to have such a support network and we will need you now and in the future.
Stephanie, Landon, and Ava