Catching Up
Days after I finished writing (but not publishing for some reason) my last post we had our first appointment with cardiology after being discharged from the NICU. We were happy with how things had gone in Edmonton and in Winnipeg so we were anticipating a routine post-op check up which we had been told to expect twice a year until he's 18, at which point he would continue with annual check ups as an adult for the rest of his life. Little did we know that appoint would actually be the start of the next part of our journey.
James had been growing beautifully; a sign that his heart had healed from surgery and was allowing the nutrients he was eating to help his body grow. He was in the top 80% for hight but the bottom 10% for weight. Not an unhealthy weight, just a long lean baby with just the right amount of thigh rolls to make all the pinching nana's out there happy.
However when they looked at his heart things were not quite as happy. There was narrowing in his pulmonary artery that we were told was likely caused by scar tissue from the arterial switch operation. At this point it was on the low end of moderate, but it was enough of a concern that his cardiologist requested we come back in three months for another check up instead of the usual 6 month interval.
I'll be honest, even to this day, every time we go for an echo to check up on his heart I have this tiny little hope inside me that they're going to see that his heart is fine - that by some miracle his heart would be completely whole as if it had never had, nor needed, surgery in the first place.
Days after I finished writing (but not publishing for some reason) my last post we had our first appointment with cardiology after being discharged from the NICU. We were happy with how things had gone in Edmonton and in Winnipeg so we were anticipating a routine post-op check up which we had been told to expect twice a year until he's 18, at which point he would continue with annual check ups as an adult for the rest of his life. Little did we know that appoint would actually be the start of the next part of our journey.
James had been growing beautifully; a sign that his heart had healed from surgery and was allowing the nutrients he was eating to help his body grow. He was in the top 80% for hight but the bottom 10% for weight. Not an unhealthy weight, just a long lean baby with just the right amount of thigh rolls to make all the pinching nana's out there happy.
However when they looked at his heart things were not quite as happy. There was narrowing in his pulmonary artery that we were told was likely caused by scar tissue from the arterial switch operation. At this point it was on the low end of moderate, but it was enough of a concern that his cardiologist requested we come back in three months for another check up instead of the usual 6 month interval.
I'll be honest, even to this day, every time we go for an echo to check up on his heart I have this tiny little hope inside me that they're going to see that his heart is fine - that by some miracle his heart would be completely whole as if it had never had, nor needed, surgery in the first place.
Getting To Know You
So we continued to live and love our little guy with this sort of dark cloud looming in the back of our heads. But despite what the news we had been given by cardiology James continued to grow and develop. He hit all his milestones either right on target or ahead of the game. What was even more fun was seeing his personality really emerge and develop. And what a personality!
This kid! I tell ya. He's so happy! He's very friendly and smiles all the time. He loves to giggle when daddy tickles the back of his neck with his scruff, and jumps like a true volleyball player in his Jolly Jumper. He's got some sass too, don't get me wrong. I mean, how could he not?! As much as my husband's family like to attribute everything as James does with the blanket statement, "he's a Burns", he's also half Hart and has all our flare for dramatics and love of music. Every day it's like I get to know him a little better.
But he also continued to scare us from time to time by occasionally turning that gross dusky colour with blue/purple feet and hands. And we noticed that he would randomly space out; vacantly stare into nothing while being completely unresponsive to all kinds of stimuli. We'd mentioned this to cardiology but just assumed it had something to do with his heart working a little bit harder. They said it should be fine but gave us a clear set of red flags to look for, and contact them if we noticed any of them present. The biggies were blue lips, limpness, extreme lethargy, and of course unconsciousness. So we started to keep a record of all symptoms that seemed a bit out of the ordinary. And while it kind of made me feel like a hyper attentive parent, I just had this gut feeling I needed to be a little extra vigilant.
So we continued to live and love our little guy with this sort of dark cloud looming in the back of our heads. But despite what the news we had been given by cardiology James continued to grow and develop. He hit all his milestones either right on target or ahead of the game. What was even more fun was seeing his personality really emerge and develop. And what a personality!
This kid! I tell ya. He's so happy! He's very friendly and smiles all the time. He loves to giggle when daddy tickles the back of his neck with his scruff, and jumps like a true volleyball player in his Jolly Jumper. He's got some sass too, don't get me wrong. I mean, how could he not?! As much as my husband's family like to attribute everything as James does with the blanket statement, "he's a Burns", he's also half Hart and has all our flare for dramatics and love of music. Every day it's like I get to know him a little better.
But he also continued to scare us from time to time by occasionally turning that gross dusky colour with blue/purple feet and hands. And we noticed that he would randomly space out; vacantly stare into nothing while being completely unresponsive to all kinds of stimuli. We'd mentioned this to cardiology but just assumed it had something to do with his heart working a little bit harder. They said it should be fine but gave us a clear set of red flags to look for, and contact them if we noticed any of them present. The biggies were blue lips, limpness, extreme lethargy, and of course unconsciousness. So we started to keep a record of all symptoms that seemed a bit out of the ordinary. And while it kind of made me feel like a hyper attentive parent, I just had this gut feeling I needed to be a little extra vigilant.
Flash Forward
Fast forward three months. James is now 5 months old and we're headed back to cardiology for our check-up. On the home front things had been going well! We were happy, and growing, and giggling, and moving. Everything seemed great aside from the continued blue hand/feet (which we learned is called Cyanosis), and the occasional episodes of spacing out. This time around Chris was able to get the day off from work to join me for James appointment and I was really glad to have him there. I love that my mom has been able to go with me to all our millions of appointments (especially the two months of biweekly trips to Cancer Care for hematology check-ups on the blood clots in his right internal jugular that they were worried would come loose and cause a heart attack or stroke - I was glad when I didn't needed to give him injections of Enoxaparin twice a day anymore!) but there was just something comforting about having Chris there with me.
Unfortunately they weren't able to give us good news. It turns out the narrowing in his pulmonary artery had progressed significantly since his last appointment and required medical intervention... which we found out meant surgery in Edmonton. On top of that we were told to prepare for the fact that they might send us the next day!
Fast forward three months. James is now 5 months old and we're headed back to cardiology for our check-up. On the home front things had been going well! We were happy, and growing, and giggling, and moving. Everything seemed great aside from the continued blue hand/feet (which we learned is called Cyanosis), and the occasional episodes of spacing out. This time around Chris was able to get the day off from work to join me for James appointment and I was really glad to have him there. I love that my mom has been able to go with me to all our millions of appointments (especially the two months of biweekly trips to Cancer Care for hematology check-ups on the blood clots in his right internal jugular that they were worried would come loose and cause a heart attack or stroke - I was glad when I didn't needed to give him injections of Enoxaparin twice a day anymore!) but there was just something comforting about having Chris there with me.
Unfortunately they weren't able to give us good news. It turns out the narrowing in his pulmonary artery had progressed significantly since his last appointment and required medical intervention... which we found out meant surgery in Edmonton. On top of that we were told to prepare for the fact that they might send us the next day!
Valvuloplasty
The surgery they wanted to perform on James is called a valvuloplasty that uses a heart catheter and balloon to try and stretch out the tissue of the pulmonary artery where it had narrowed. We were told that on a normal heart it has nearly a 100% success rate, but that on a repaired heart like his it seldom works. They wanted to try it first though because it is a less invasive procedure than an open heart surgery.
So we headed home, heads spinning with the news that we may be off to Edmonton the next day and began to arrange our personal affairs. Chris and I agreed that since this was a less invasive procedure and we may have to go back a third time anyway that Chris would stay home and my mom would come with me this time around since it would be difficult to get time from work in the middle of exams (he's a high school teacher).
The next day we got our call from cardiology but we didn't get the news we had anticipated. As it turns out we weren't going to be heading out that day or even that week. Our surgery date had been scheduled for 3 weeks down the road which actually gave us a good amount of time to prepare and do some proper research as we always do. We were asked to notify them if he seemed to be getting sick as this would mean rescheduling the surgery, and continue to record any "red flags" and report them as that may require surgery to be bumped up. Needless to say, those "red flags" caused us a bit of a stir as we approached the week of surgery. But more on that tomorrow.
The surgery they wanted to perform on James is called a valvuloplasty that uses a heart catheter and balloon to try and stretch out the tissue of the pulmonary artery where it had narrowed. We were told that on a normal heart it has nearly a 100% success rate, but that on a repaired heart like his it seldom works. They wanted to try it first though because it is a less invasive procedure than an open heart surgery.
So we headed home, heads spinning with the news that we may be off to Edmonton the next day and began to arrange our personal affairs. Chris and I agreed that since this was a less invasive procedure and we may have to go back a third time anyway that Chris would stay home and my mom would come with me this time around since it would be difficult to get time from work in the middle of exams (he's a high school teacher).
The next day we got our call from cardiology but we didn't get the news we had anticipated. As it turns out we weren't going to be heading out that day or even that week. Our surgery date had been scheduled for 3 weeks down the road which actually gave us a good amount of time to prepare and do some proper research as we always do. We were asked to notify them if he seemed to be getting sick as this would mean rescheduling the surgery, and continue to record any "red flags" and report them as that may require surgery to be bumped up. Needless to say, those "red flags" caused us a bit of a stir as we approached the week of surgery. But more on that tomorrow.
Dedication
Considering how positive James is, it just wouldn't feel right to finish off this post on a downer. The good thing that came out of the surgery delay was the fact that it allowed us to have James dedicated at our church. For those of you who may not know what this means, our faith tradition doesn't baptize babies like some denominations. Instead, we recognize that faith is a personal choice and when the child is old enough to understand and decide for themselves what they believe they can be baptized if they choose. So, as babies we dedicate them, or rather the parents dedicate themselves to raising their children to know God. Two of the principle calls of our faith are to love God and love People, and as parents we want to raise our kids to understand these things. Of course I could go much deeper into it then that but that's kind of the gist of it. It was a special day with family and friends and we were so glad to have had the opportunity to do this before his next surgery.