#heartmamadiaries | DECEMBER 2019 UPDATE

Yesterday, Iver had his first echo in almost 6 months. Leading up to it, we tried our best to explain to him what to expect from his appointment, but he was very fixated on getting another “big bandaid”. He’s old enough now to remember that scary, painful things happened to him at the hospital. It breaks my heart that this is a part of his story. Iver’s/our journey has been full of ups and downs and I need to work hard to choose to live life with joy and hope despite feeling like we are always taking one step forward, two steps backward. 

That being said, when we walked through the doors of the Stollery cardiology clinic, it was the first time Iver seemed to relax. All this 3-year-old anxiety turned into 3-year-old courage when he recognized where we were. There are no owies in this part of the hospital. We went through once again everything that would happen during his appointment, and he finally seemed to believe me. I know many of you were praying for his anxiety, and I want to thank you so much. Iver was a complete rockstar. He was cooperative and calm the entire 3 hours that we were there.

However, I know the drill by now. When his echo tech tells me she’s sending the doctor in to take a few more pictures, I start preparing myself for bad news. It’s been 13 months since his 3rd open heart surgery, this last time receiving a brand new conduit in place of the pulmonary artery he wasn’t born with. Following this surgery, the gradient level (the measurement of the blood pressure flowing through his conduit) had improved greatly.

Before his surgery, the gradient level was up to 79. A normal person’s heart has a gradient of 5. After surgery, the gradient through his new conduit was about 14 (if I remember correctly!), which was what we were hoping for. We hoped that this conduit would last him until he was around 10 or 12 years old. However, In July 2019 (8 months after surgery, and just over 5 months ago from today), we found out that his conduit was narrowing again, with the gradient level being in the 30’s. Yesterday, we found out that it has continued to narrow and is now in the 60’s. We don’t know why it’s narrowing. It just is. 

Iver’s cardiologist will be presenting him at surgical conference in the new year. She will get the whole team up-to-date on his situation, and together, decide when and what interventions will be needed. The hope is that they can try a balloon cath or a stent to open up his conduit and make it last a while longer, but given his history, a 4th open heart surgery may be in his future much sooner than we had hoped. Either way, we should be back in about 3 months for another echo, ecg and the whole shebang to see how he’s doing.

So, how am I doing? Well, since this is my blog/journal, let me tell you. It’s weird. It’s weird to have faith that things will be better, and at the same time, preparing for bad news. I think that I am so used to getting bad news, that part of me has to expect it so that I won’t be crushed when I do. We have learned that we need to roll with the punches. These things are out of our control. At the same time, we continue to have faith in God’s goodness and faithfulness, despite the horrible things that happen while we are living in this fallen, broken world. 

My heart is sad. So sad for Iver and the thought of him going through another surgery while he’s so young. And then, it’s grateful. Grateful for the normal life he is living because of the interventions he has needed. I’m scared because looking at him, I can’t tell that there’s anything wrong with him. People tell me all the time that he looks so amazing and no one would ever be able to tell all that he’s been through. And I know that they’re being kind and are amazed at his strength and energy. But it often makes me want to drop to my knees and sob, because that’s the scariest part of it all. I can’t tell either! It’s so conflicting and confusing to be thankful for it, and feel so helpless because I know that even as his mother, I wouldn’t be able to tell that his heart is failing him until it’s too late. And then I’m grateful once again for how closely he is being followed by his incredibly smart and gifted medical team. And I’m thankful for health care. And I wish that I could have fully rejoiced when we were allowed to wait 6 months between echos, but I couldn’t. And this is why. The anxiety that is always in the back of my mind takes up more room as more time goes on between appointments, wondering how bad the narrowing is getting, how fast it’s narrowing, and how I would ever know by looking at him. 

But, life moves forward, and Iver, if you know him, is SO full of life. He has more energy and spunk than most kids I know, and I’m thankful that he really doesn’t have any idea what’s going on. He needs to be a happy, energetic kid, and I have the great honour and privilege of being a fun mom for him. So yes, I’m struggling with all of these emotions, but God is so good and He lets me pour out my heart to Him so that He can carry this for me. He gives me the strength to move forward with joy and hope, and I could NOT do this without Him. 

Please continue to hold Iver and all of us in your prayers. We don’t know what this next year will look like for our family, and it’s hard. Thank you for allowing me this space to put to words my thoughts and feelings, it’s truly healing in and of itself. 

#heartmamadiaries | RAW

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.

#heartmamadiares | NEVER TYPICAL

Today marks exactly 4 weeks since Iver was discharged from the hospital after his 3rd open heart surgery. In case you missed it, he got a new pulmonary conduit put in. Yesterday we had a full day of follow-up appointments in Edmonton. The most amazing news I have to share is basically everything you can see for yourself. He's doing amazing. He's even ahead of the curve in his development, which is extra awesome considering all that he's been through, and all the time he's spent in the hospital. 

However, there is some not-so-great news, and that's what we can't see with our own eyes...

Iver's echo results showed that there is a significant narrowing in his new conduit that wasn't there 3 weeks ago at his last echo. The doctors still don't know why exactly this has happened. It could be something on the outside putting pressure on the conduit, it could be a blood clot forming (but likely not), and the most likely case is that the graft is folding in on itself.

This is quite uncommon, but of course, Iver seems to like to keep us on our toes. I'll be honest, it was really hard to hear. Going into the appointment, I was wondering if we may be told that instead of his regular 3-month check-ups, that they might say we would see them again in 6 months! So, needless to say, this feels like a giant step backwards. I find it especially hard that once again he looks so amazing, and we would never know that something was wrong with his heart. It's certainly scary!

Iver's case will be presented at surgical conference once again on Tuesday. The whole team will review his images and his history, and decided what to do next. His cardiologist thinks that what most likely will happen is they will try to insert a stent to re-open the narrowing. Iver had a similar procedure done when he had his emergency at 4-months-old. When his aortic arch repair re-narrowed, they tried balloon catheter procedure, that was unfortunately unsuccessful. He needed that second heart surgery anyway. We're praying that a stent is the decision that will come out of surgical conference, and that it will be successful!

So. The rollercoaster of emotions is at large in me. But again, I can't help but look to God in thanksgiving. His hand of protection is so clearly over Iver's little life. He is guiding the steps of his medical team, and we just want to glorify Him through this! It's not easy, but I am fighting to choose gratefulness when all the other thoughts want to take over my mind. It is through God's strength alone that I can keep moving past this feeling of complete exhaustion.

We should know more information hopefully by Wednesday. I'll keep you updated as best I can. Please pray for him, and for us. Thank you so much.