February 4,2019 Monday

Hey everyone, glad it’s February. Feels like we have been hibernating all week as it has been so cold and snowy ❄️. Ava has been doing really well here at home. We had a couple appointments in the last 2 weeks. Occupational therapy came to the house and we seen her Pediatrician for a follow-up. Her ostomy has been good and we continue to do the dilation twice a day. Can’t believe she will turn 18 months soon. She is almost walking, and can stand for short spurts. Ava is getting stronger each week and is growing taller. She has been so playful and giggly. We have done a couple outings together as a family on the weekends which has been really nice.

This month is CHD (congenital heart disease awareness month). Honestly before Ava’s journey I had no idea this month awareness existed. Learning a lot about it opened my eyes how many children are born with a heart defect. We met some amazing, incredible families while in the Stollery whose children had heart surgery and other medical procedures like Ava. These families are amazing and are a big support for Landon and I.

We are so blessed Ava’s heart is doing well right now. It was rare with her specific heart defects to be undiagnosed at birth and grow to 3 months old when it was discovered. She presented no symptoms other than not gaining weight and her body adapted and compensated to her heart defect. It still scares us how she looked so “good”and “fine” yet was struggling inside with each heart beat. Thankfully for the heart surgeon, anesthesiologists and intensifiers for their incredible work, Ava’s heart is beating normally right now.

She had an interrupted aortic arch, a massive ventricular septal defect (VSD), atrial septal defect (ASD) and Patent PDA which was all repaired -essentially her heart re-wired. She was 3 months old and her heart was the size of a strawberry. The surgeon used ‘gortex’ to repair alot in her heart. Ava has wires permanently in her chest from when it was cracked open. She got really sick in the PCICU with pulmonary hypertension to where she needed to be paralyzed and on full life support including nitric oxide in order for her vitals to sustain. She needed many lines, tubes… it was overwhelming…Landon and I couldn’t hold her for 2.5 weeks. She will always have a cardiologist and have ECHOs to monitor her heart. She may need another heart surgery down the road when she is older, but for now it is working really well 🙏🏼.

This was just the beginning of our journey. Our next step is her reversal of her ostomy. We see her surgery on in a couple weeks and will continue to make a plan. So much anticipation ahead, but hope..as to getting this all fixed.