Over the last month I have been blissfully ignorant and almost forgot that my dear Finn has such a dramatic heart condition. Other than giving him his medications three times a day, life is pretty standard. We’ve been enjoying maternity leave with snuggles, errands, nursing and the occasional trashy daytime TV show. From the outside, it doesn’t appear as though anything is wrong with our beautiful boy. It makes it too easy to forget that he’s sick. That his heart is working harder than it should. That it is so big that it could be a serious issue if he catches a cold, has a fever or just gets too upset. Today I was reminded of all of that.
We had a follow up appointment with The Children’s Hospital Heart Clinic. Our cardiologist, Dr. Vezmar, wants us to come in every month for an EKG and echo to monitor Finn’s heart. We are watching it in hopes that it gets better, but also to make sure it doesn’t get worse. Because we still don’t know what caused this, we can’t really treat him and so we shouldn’t expect anything to change. Dr. Vezmar admits that he doesn’t expect to see any improvements in Finn’s condition until, at the very earliest, 6 months. But, it’s important to continue to monitor to make sure it isn’t going the other way and getting worse. Even if we don’t see changes at 6 months it could still get better, or worse. Basically it comes down to the fact that we don’t know and likely won’t for some time and that time is not set. A hard pill to swallow for a planner and fixer like myself.
I always know in the back of my head that my son has a heart condition. When I say I almost forgot, it’s not that I don’t know or that I am actually forgetting but rather it seems to slip into the back of my head. I forget how “extreme” his condition is. Today we were reminded when it came up on screen during his echo as “EXTREME Hypertrophic Cardiomyopathy” and when Dr. Vezmar started talking about how rare it is to see this much of an enlargement in someone his age. What it comes down to is that babies aren’t born with this big of a heart. It’s extremely rare. All of the reasons that they think it could happen have been ruled out - so what does that mean? I wanted to be clear on best and worst case scenarios, even though we have significant time before we know which road we are headed down. Best case is still that Finn’s heart begins to heal itself (I’ll take this one please!) Worst case would be a heart transplant. Yes, a heart transplant. What? I couldn’t believe that was something we touched on today. We won’t know any time soon which is more likely or whether we fall somewhere in the middle, but it’s still a possibility that is swirling around in my brain. As much as I don’t want to think about it, it’s hard to mute that conversation inside my head.
In the meantime we were encouraged to get ourselves checked. Asher, Jeff and I should all get echocardiograms just to see if there is anything out of the ordinary. It very well still could be genetic and it doesn’t hurt to find out if any of us have enlarged hearts. I plan to have all of us looked at just to rule it out or possibly help diagnose Finn. We are also doing a deeper pathology on the Carnitine Deficiency. I talked to our genetic counselor today and we are waiting for our insurance company to give the green light to test Finn’s blood samples for more of an understanding of whether his CD is primary or secondary. From what I understand, CD can cause HCM but HCM can also cause CD. So, which is causing which? We don’t know. I was retested a week and a half ago and although I still have a deficiency, it seems to be not as dramatic as it was when I initially took the test. The genetics department is going to follow up on whether I should get on supplements and if we should have Asher tested.
Maternity leave is more than halfway over. It’s scary to think about putting my fragile child into school where he will be exposed to sickness and I will have to trust someone else to give him his medications or make sure that he isn’t getting too upset and his heart rate and respirations are staying low and under control. After our appointment I couldn’t stop thinking about all of that. I called the heart clinic and followed up with Dr. Vezmar. Is it even safe for him to go to the Montessori school? Should we be thinking about getting a nanny? I was assured that we can’t keep our son living in a bubble and that he can go to school, however we will have to be vigilant with keeping him clean and monitoring sickness. Easier said than done as any family with a child in daycare can tell you.
Today is tough. I haven’t had a day like today in a while. Yesterday I got upset at the thought that my leave was going to be over soon. I was selfish in the fact that I may not have 3 months to snuggle a new baby ever again. I cried, but I cried for me. I was questioning whether I want to stay home or go back to work. Today was different. I cried for Finn. I am scared for him and the real world. What if he doesn’t get better. How do you keep your baby safe when you aren’t there? I think all parents worry about this when sending their babes off to school, but it is so much more serious this time. The unknowns are killing me.
Hopefully tomorrow I will go back to being blissful and able to “forget” that he is sick. We will take a walk, go to baby yoga, hit up Target and take a long afternoon nap. Tomorrow we will pretend that we are normal again.