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.