6.7.19

#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.


6.12.18

#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.


27.11.18

#heartmamadiaries | FLASHBACKS

Iver, two years ago on his 3-month birthday.

I LOVE Facebook flashback pictures for obvious reasons (hello cutie pants!) but if I'm being honest, when I see these perfect pictures of Iver from the weeks leading up to his emergency, I am hit with anxiety like a ton of bricks to the chest. I started writing all of this on Facebook, and thought it was really a long journal entry or blog post. So here I am once again, after all this time. Just needed to get this out!

How could we have possibly known that his aortic arch had re-narrowed? He looked like a healthy baby. He acted like a healthy baby. He was knocking those milestones out of the park, despite all he had been through a few short months before. We had no idea what we were about to face, that I would watch my 4-month-old baby go into pre-arrest. That would would become terrified beyond what we could ever imagine.

And then, I remember. With almost disbelief I remember how we made a last minute decision to drive to Edmonton to celebrate Juliet's birthday. I remember how on our two hour drive to the city, Iver's little cough was suddenly a really scary sounding cough. I remember him crying and crying in his car seat, which was so unlike him! I remember not wanting to spoil Juliet's birthday by going to the hospital, but feeling that nudge that I really should go get him checked out. I remember feeling guilty about ruining our fun plans.

I remember seeing the infant chest x-ray contraption for the first time, and the nurse telling me about how most babies cry really hard, but the occasional baby would fall asleep in there. I remember laughing about it and telling her that if Iver did that, I would need to take a picture for Mark. And then I remember thinking he did fall asleep. I remember his arms going limp and his head dropping to his left side. I remember starting to laugh about him being one of those few babies who was actually falling asleep, until the x-ray tech suddenly ran towards him and started unbuckling him out of the medieval chest x-ray contraption. I remember the nurse grabbing him and running down the hallway and me, running after her, asking what was going on. I remember not knowing what pre-arrest meant. I remember feeling guilty for laughing about him falling asleep, or at least, I thought he was. I remember a swarm of doctors and nurses surrounding Iver in the emergency room. I was standing behind them, feeling helpless. I remember hearing about resuscitative drugs and prepping for CPR. I remembered that Mark and the kids were off playing at the indoor playground.

Then I really don't remember anything else until he was settled. The resuscitative drugs had worked. I was numb. I then remember calling Mark at some point. I remember asking if I could get a breast pump because I was so full of milk. I remember Mark and the kids being there, and finding out that the quick x-ray photo showed that Iver's heart looked too big. I remember Mark and the kids leaving again, and not long after that, moving up to the Pediatric Cardiac ICU once Iver had been admitted.

I felt safe up there. We had been there before and knew how incredible the team was. I remember feeling so hungry. I hadn't eaten since the morning. Iver was stable, and in good hands. I took the opportunity to run downstairs for a bite to eat. I had bought my food and sat down for only a moment before I saw the PCICU number pop up on my phone, calling me. "You need to come up here right away. He went into pre-arrest arrest again." No. No no no no no! I don't remember if I waited for an elevator or ran up the stairs. But I do remember running into the ICU and seeing a flat line on his monitor. Like a movie scene, a couple of the nurses rushed towards me embracing me, and reassured me that he was fine and the monitor wasn't hooked up for a brief moment as they were doing something. The resuscitative drugs had worked again. I remember feeling guilty that I went to get food. That I wasn't there. He could have died and I wouldn't have been there.

Fast forward to finding out that his aortic arch repair had re-narrowed from scar tissue, and that RSV and all the crying had pushed him over the edge. He could have gone into arrest, every so quietly in his car seat. We would have thought he was sleeping. But, he didn't. God orchestrated our circumstances, through whispers and planting ideas in our heads to go to Edmonton on that specific day. Despite my guilt about ruining Juliet's birthday plans, he continued to nudge me to the point where I couldn't ignore it: I needed to take Iver to emerge. He saved my son.

And this, friends, is what goes through my mind when I see sweet pictures of Iver at this age. All in about 2 seconds of what feels like flashes of movie scenes that quickly run through my mind. And I feel like I can't share his story enough, and point to my incredible God. God still has plans for Iver on this Earth. I don't know why he was born this way, but I do believe that God cries with me, and that He can turn anything into something beautiful.

I also want to take this opportunity to thank everyone and anyone (because I know there are so many people who don't know us personally) who have prayed for Iver, or helped our family in any way over these past 2 years. It's hard knowing that I could never repay you for what you have done. It's overwhelming trying to remember everyone who has been there in some way for us, and to write personalized messages. I wish I could, and humbly ask that you would accept this as my most sincere thank you. I pray that God blesses each of you for your generosity and prayers. We are overwhelmed with gratefulness.

Ok wow! I was not planning to do this today, but here we are. A nap time well spent.

Rebecca.