Five months. Five months since we last stepped through the doors of the Stollery Children's Hospital. It had been the longest stretch of time that we had ever gone between Iver's cardiology appointments since I was 20 weeks pregnant with him. And while it was a blessing, this larger gap came with many struggles.
I think I have almost become dependent on Iver's echos because they can tell me what's *really* going on with his heart. It's hard for me to trust my own eyes. When people comment about how good he looks, how healthy he seems, or how you would never know all that he's been through, I completely agree, but there's a part of me that wants to say that it doesn't matter. It doesn't matter how good he seems, we might not have any clue that his heart is failing him. I know this reaction is still a direct response to his emergency at four months old, but I find I'm relying heavily on those echos for peace and comfort. So, the longer wait between appointments was hard for me. Despite all of this, I did my best to remember to give it all over to God. The fear, the anxiety, that search for peace. But to be honest, I'm quite the work in progress and often try to handle all the feels on my own. (Spoiler alert, that doesn't work very well!) I need to continue to trust God to write his story.
As soon as I stepped foot into the hospital, I felt my anxiety heighten. The rollercoaster of memories flooded my mind and my heart felt overwhelmed. I'm used to receiving bad news from echos, and I didn't want to get my hopes up too high, only to be completely crushed. But, I had work to do. This isn't all about me and my struggles with how to handle these appointments. I needed to be strong for Iver, keep him entertained, and try not to let him figure out that I was scared. I needed to act cheerful in hopes that he will trust these people, these doctors and nurses and echo techs and everyone in between, and believe that they are safe, that they're trying to help, that they won't hurt him. But it's hard, because he's old enough to remember and know that the hospital certainly does not feel like a safe place sometimes.
The appointment was a long one, at over 3.5 hours, which doesn't help me! Longer appointments have almost always meant bad news. And of course, it's hard on Iver who eventually reaches a point where he just wants everyone to stop touching him and go home. His safe place. We watched a TON of screentime (which, if you have a child with medical issues, you know all the rules go out the window for appointments and hospital stays), and ate some chocolate chip cookies. That worked for a while, until it didn't. He. Was. Done.
After 3.5 hours we finally met with Iver's cardiologist and received the test results. His heart function is looking good, his aortic arch is looking good, but his pulmonary conduit (artificial pulmonary artery) is looking *slightly* narrowed once again. His cardiologist said that she really hopes his conduit lasts, and that she would be so sad and disappointed if it doesn't. However, it's such a slight narrowing that we do not need to proceed with any further testing or interventions at this time. We get another 6 months in between appointments and we keep doing what we're doing. The daily Aspirin, watching him for signs of shortness of breath or tiring out easily.
While it's definitely not the news I was hoping for, it's still good news. Having another 6 months is a blessing. I have #heartmama friends who are in the thick of really scary things right now, and I must focus on gratefulness for how far the Lord has brought us. Iver is full of energy (maybe too much haha) and joy! He is living a happy childhood, and every day is a blessing.
As these 6 months go by, my goal is to talk with God every day about my fears and anxieties, and lean on Him. I will trust in His goodness, and the story that He is writing for Iver and our family.
Wow. I think I'm going to do a rare blog post for this, as I was not expecting my Instagram post to be this long! Journaling is therapeutic, and I appreciate you taking time to read this. Writing these posts help me acknowledge my issues, and work through them and turn towards a healthier mindset. This is me, being raw. I'm not going to pretend like I have it all together and I'm this super strong woman who deals with everything calmly and with ease. It's hard. And I hope you understand that every ounce of my strength comes from God.
Please keep Iver, his siblings, and Mark and I in your prayers. Please pray that his conduit stays open, and that it lasts for years to come. Thank you! Xo.
