Wisdom Heart

I was reading a post today on novasheart.blogspot.com about worry and heart kid's health. I started to post a comment, but as it grew, I thought I should post it here instead.

Worry seems to be a natural part of being a parent. And when your child has a severe heart condition that worry can become exponential. But all parents know, you can instinctively tell when something isn't right with your child. And we have been advised by Sophia's doctors to trust our instincts. The thing is. When you spend long stretches in the hospital with monitors for every aspect of your child's health, there can develop a concern born of the little fluctuations in this number or that level. But it has been our experience, these details are less important in the broader picture.

We know Sophia's oxygen saturation levels fluctuate. There are times her nail beds are a little blue and her extremities are colder than they should be. There are times she is warm and pink (..let's say pinkish). But what is important is that we know what is normal "for her". We know when she cries the little vein on the side of her nose is going to turn blue and her lips are going to get a little deeper in hue. We know when things are "normal" and we know when they are not. If they are not we call the doctor.

Sophia has had a cough for 6 weeks now. Our instinct is to blame it on the fact that she is cutting several teeth and the combo of extra drool and her swallowing dysfunction makes her cough. The pediatrician says, it is a stubborn virus. But, they are trained to not blame anything on teething. The point is, it's just a cough. Somehow you just know. Of course there are cardiac concerns, but you know what is normal and what is not.

The thing you learn right away is that the doctors will trust you to tell them when something is wrong. The first thing that happens when you go to the emergency room for the flu or something, is they hook up the oxygen sat monitor and immediately this panic rushes across their face. That is when you step in, before they grab the crash cart, and say that's normal for her. Then they all relax and proceed as though that number were "normal".

We had the option of taking all kinds of monitors home with us when we were discharged from the hospital. We refused to take them. We were such slaves to those monitors while we were in the hospital the last thing we wanted was to be slaves to them at home. This was a very personal choice and for some parents the monitors are reassuring.

Erin, with all your experience as a mother, you will be fine. The connection we have with our children that makes us feel the things they feel, the one that makes it so painful to see them suffer or in pain, has a real purpose. We feel when things aren't right. We know when our child is in danger. As long as we don't run from our responsibility to feel that connection, we will always know what to do. Like you said in a previous post, with long hospital stays, you begin to wonder if you can care for your child, since it takes a whole team to do it in the hospital (or something like that). It is my opinion, it is the environment that causes the lack of confidence. Obviously as parents, we don't know how to perform, or sometimes even understand, all the medical procedures. But once home, its less about medical procedures and more about family responsibilities. These are, of course, no easier than medical procedures. But at least we somehow know what to do.

Any comments from other parents of heart kids or any parents for that matter would be greatly appreciated.