I am OVERWHELMED. There is quite literally no other way to describe what I am feeling on a day-to-day basis. It was one thing when I was trying to settle in to a new routine with our newborn and our two year-old, but now our family is coping with medical conditions in both boys. Life is not simple for our family right now, but I am doing my best to keep it as simple and non-traumatic as possible.
For those of you who don’t know, our oldest has been having seizures. I wrote a post about that when we first began that journey. Now we have a definitive diagnosis of epilepsy and are trying to find the correct levels for his medications. The pediatric neurologist told us that the goal at their clinic is two years seizure-free with medication and then beginning to wean. This provides some hope of relief. He continues to do quite well and no further diagnostic testing is required, at this time.
Our newest boy, however, is just at the very beginning of his medical journey. Shortly after birth, he developed a hemangioma. It is located on the left side of his head and continues to grow every day. Because of its size and location, the specialist that the pediatrician consulted with wants to run diagnostics to help rule out a diagnosis of a condition known as PHACE. Our little guy had an echocardiogram and it was found that he has a bifurcated valve in his aorta and slight coarctation (narrowing) of his aorta. We will be doing an EKG and seeing a pediatric cardiologist near the end of the month. He will also have an eye exam and a hearing exam to see if the hemangioma is impacting these areas of his body. Eventually, we will have to do an MRI to see if the hemangioma is damaging his brain, but these other tests are helping to stave that off.
Aside from these issues, our children are quite healthy and happy. Well, I imagine my newborn is happy…rather hard to tell ;) Being only three weeks into my postpartum period is most definitely making things more difficult to cope with. I work very hard to remain in the moment and to not get ahead of what we know, but having so many unknowns to contend with can make a person a little crazy. There is so much to get done every day while still making sure to cut-loose and enjoy time with the kiddos, and sometimes I am not the person I want to be. I imagine that on the other side of all of this, I and my husband will be stronger and our relationship will be deeper, but getting there is certainly nothing I ever imagined in my life. I have had a number of terrible trials to overcome in my short lifetime, but they pale in comparison to worrying about your babies.
How do you cope when you feel like you can’t do anything to help your children?