My Son's Broken Heart Breaks Mine!

This weekend Brad and I went to the National Congenital Heart Defect Conference in Houston. My parents watched all three of the boys. This was their first time to watch the kids overnight. They had a great time. My dad let David shoot my old bow and arrow. For those of you that may not know, I used to be the best gal archer in the state! I pulled out my old bow and we had fun shooting. My dad pulled out some old trophies and while we were gone they had competitions. David "won" a huge trophy and even Christopher won a trophy for shooting. Jacob shot too (with my Dad's help) but he wasn't too interested in a trophy like David and Christopher. The kids loved the trophies and my dad was happy to get them out of his house!

My brother had just returned from a deployment in Korea so he was at my parents with his children too. The boys love to play with Jack and Cammie, they are a few years older so the feeling may not be mutual...but at least they helped my parents by keeping my kiddos entertained! :) My mom said the kids were well behaved and didn't have any problems sleeping...well except Christopher waking up one night! I'm hoping that since my children were so well behaved (that was my mother's description of their behavior!) that they will be able to stay there again soon! My parents never left us when we were young and since she still works it is hard to convince her that she should spend her weekend with my three wild children to create chaos instead of having a quiet and relaxing weekend with just my daddy! :)

So while my kids were having a blast at their Grandparents Brad and I spent the weekend in Houston. Our main reason for going was to attend the National Congenital Heart Defect/Disease Conference. It was very informative (is that even a word??). I learned a lot about the genetics and chromosome disorders that usually go along with CHDs. It was very interesting and I think we'll probably have some more extensive tests run on Christopher. He has had some chromosone test run, but not the full screening (it is about $350,000 and insurance won't cover it!). Obviously we won't have that done, but we were advised of some specific disorders that he shows some symptoms and we'll have those checked. They are not anything serious, in fact the worst symptom of them is the heart defects, it is mainly just something good to know as some may affect his growth and will "run" in the family.

He is now three and a half years old now and I felt like I was finally comfortable with his disease. Sure it is on my mind daily, but I am finally at peace with it...or so I thought! This conference was such an eye opener for me. The Pediatric CardioThoratic Surgeon began the conference with a picture of him and his father fly fishing. You were probably thinking the same thing I was...how does this pertain to CHDs? His comment was that his personal goal when performing surgery on our children is to be able to give our children the chance to be 85 years old and healthy enough to go fly fishing with their children...unfortunately the reality of it is it will probably not happen in their lifetime. I guess I thought it was going to be more encouraging but it seemed to be much more of a reminder that my child is sick with a fatal disease with the reality of meeting other mothers that have had children die from heart diseases. Probably not the perfect timing since just last week Christopher's teacher pointed out that he seems to be tiring out faster than the other children and seems to be a little less active than he has been. I had been noticing the same thing and remembered how his pediatric cardiologist warned us that this would be the age that we should keep a closer eye on symptoms of heart failure. He has stenosis in his pulmonary artery and a leaky valve, it is causing his right ventricle to pump too hard and wears him out easily. I'd like to think it is just because it has been so darn hot...but it is hot for the other kids too! This probably sounds horrible, but for the past couple of weeks I have been secretly hoping that he is getting sick with a cold or virus or something, unfortunately he hasn't had a runny nose, coughing or any other symptoms... so I'm afraid it may be his heart. We'll head back to the pediatric cardiologist this week! For those of you thinking "Oh my gosh, why didn't you send him to the dr already?!?" We have already discussed this with our doctor and nothing will be done until he goes into heart failure. By the way, heart failure just means that his heart is changing and damaged more than it was at the previous visit. If it is the case, they'll wait until it gets to be at an unsafe level and then we'll head to Children's Hospital in Boston.

I hate to end this post on a sad note, but as I was reminded this weekend it is our life now. I try not to have too many pitty parties but I am not going to lie I HATE the fear I live with each day, the sleepless nights, wondering if the reason my child is crying is just a typical fussy fit that all kids perform or is he in pain, I hate keeping my fear of outliving my child quiet for fear of making others uncomfortable and them treating Christopher differently, I hate faking a smile and pretending that everything is OK...it is NOT.

This disease not only affects Christopher it affects our entire family! His brothers are shuffled around to doctor appointments and David knows he can't push his brother on his chest (not that he should anyway!).

It affects our marriage, we handle stress differently I know that Brad is having the same fears, especially after this weekend. We talked about Christopher's surgeons comments the morning of his open heart surgery. Dr Mayer said he was not necessarily going to be able to increase the quantity of Christopher's life, just the quality. It brought tears to our eyes. We never talk about Christopher's health problems or death. Brad is my best friend and we tell each other everything...except how we're scared! When it comes to stress we handle it differently....I need to be hugged and told everything is going to be OK - Brad wants to be left alone and not talk about it, so we don't.

It affects finances...duh!! crazy health insurance premiums and deductables; not to mention copays, medicines and the fear of what will happen after we reach his maximum insurance payout!

I hate that my son was born with heart defects and want to know WHY? Did I do something during my pregnancy to cause this? Will Christopher blame me? Siblings, marriages, finances and my poor little Christopher...something has to be done to cure him and unlike what the freakin' pediatric cardiothoratic surgeon at the conference said, it HAS to be done SOON! This is MY child dammit!