I want to update everyone on Aria’s heart so you know what to be praying. To be honest, the last few weeks have been such a roller coaster and I was having a hard time processing it all myself, but I really do believe in the power of prayer so bringing you all along the journey to know how to pray is a nonnegotiable for me.
To bring everyone up to speed, Aria was diagnosed with a congenital heart defect called atrioventricular septal defect (AVSD) in utero. This heart diagnosis is very common in children with Down syndrome and requires open heart surgery at a couple months of age. When Aria was born she still had the condition but her heart was doing really well, so much so that she didn’t need to be on medication, just monitored by a cardiologist and we were told surgery would be at 5-7 months old, so she could be a big as possible. We did monthly appointments at the cardiologist and her heart still had the two really big holes but was functioning really well.
A few weeks ago, I was at Mia and Kai’s end of school splash party and brought Aria with me. While I was there, Aria started to have labored breathing and was struggling with each breath. I immediately called the cardiologist and he had me come in with her within the hour. After the echocardiogram, he informed us that her liver was large from the added strain on her heart and the fluid around her lungs had dramatically increased since her appointment 10 days prior, causing her to have a hard time breathing. He started her on two medications and appointments twice a week. We were told the surgery would now be in a month or two max and that the cardiologist would be presenting her case to a board of surgeons so they could make the best plan for surgery.
I left that appointment so overwhelmed. I would be lying if I said I wasn’t in some denial about her heart since she was born. Call it self-preservation or whatever but I had decided to take everything one step at a time, and there was so much we were up against health-wise with her before she was born, that the fact that her heart was doing fine regardless of the holes, made me feel like ok I’ll just focus on these things right now and I’ll deal with the heart stuff later. Thankfully she was born so healthy, I just wanted to enjoy her before tackling the heart stuff and 5-7 months felt far enough away to do that.
When we were told her heart was declining and declining fast and surgery was now moved up by months, denial didn’t seem like an option anymore and I could feel myself breaking. My baby girl, 8 pounds of pure sweetness, she’s so tiny and I can’t even describe to you how small her heart is for them to be operating on. The thought of the moment where I have to hand her over to the doctors for a four hour long open-heart surgery literally takes my breath away. I know God has her and I trust Him with her with everything in my being, but it’s still so so hard and makes me feel like I’m going to crumble.
Leaving that appointment my anxiety went through the roof. I hadn’t struggled with anxiety in so long, probably since Kai’s adoption and this was crippling. The surgery and her breathing were on my mind 24/7. I never wanted to leave her and if I did it was just for an hour to work out to help manage my anxiety and I would be checking her owlet (heart rate and oxygen monitor) nonstop to see her stats. The narrative in my mind went like this: I would check her numbers, see they were fine, two minutes would go by and I would think I should check them again, no that’s ridiculous I just checked them, well what if these are the two minutes something went wrong and checking could save her life, ok I’m checking it, over and over. When my anxiety is bad that’s how it is, cyclical thoughts with no end in sight, it’s horrible.
This went on for a couple of weeks and it was really beginning to ware at me. I found myself fighting for my mind every minute. I didn’t want to live this way but I was having the hardest time turning it off. This was my baby and I am on a journey that I don’t want to be on. I found myself negotiating with God all the time, and wanting to do anything to prevent her from having to do this. How can a baby so small have open heart surgery? I wished it was my heart and would do anything to trade with her.
I talked with my mom one morning and shared with her everything that was going on with me, moms are the best, am I right? I honestly couldn’t even tell you what she said that made me feel better, I just know it involved a lot of trusting God and how she is His child ultimately. I’m not sure why at that moment I really started to believe it but I did. I saw things clearer for what they were and had a peace that I had been searching for the last few weeks. A shift took place and I was moving forward feeling empowered to be strong for my little girl and get us through this.
The following cardiology appointment went sooooo much better. Her heart and lungs were responding really well to the medications and her liver returned to normal size. Because of how well she is doing, they pushed back surgery a couple months so she can continue to grow and be as big as possible.
I am still believing that God will heal her heart so that we won’t even have to go down that surgery path, but I am thankful regardless that we have access to means like surgery that ultimately will save Aria’s life if it’s the road we need to travel.
So be praying for her for all the things; healing, surgery, a fast recovery, and my mama heart. Thank you all for the support. We really know we couldn’t do it without you!
P.S. The blanket in these photos was dropped off by our amazing realtor and friend Paige Wagner whose daughter, Nova, was also born with a heart condition. Paige use to pray for Nova’s heart while she was wrapped in this blanket. Nova didn’t end up needing surgery and Paige wanted me to have this blanket to pray for Aria in. The love and support we have experienced on this journey has been like no other, I am forever thankful.
