What comes next.....

   So, it's Mother's Day. Aaron got it just right:) Homemade pumpkin waffles in bed, steaks on the grill, and a heart shaped cookie cake. I know, very food-centric day. I've been forcing myself to eat since the diagnoses - Macsen needs food. With this rare defect, with no known cause - I can't help think it was something I did, something I ate, did I work out too hard? did I spend too much time editing photos in front of our wireless router. What's ironic is that during this pregnancy I've eaten almost wholly organic foods, bought a juicer and was drinking juiced kale and spinach - my husband said it was like licking a lawn mower. I've only colored my hair once and used non-permanent non-ammonia containing stuff at that. Sigh. I admit to eating sandwich meat and soft cheeses. And I admit to not being worried - not one day I was pregnant - that anything could ever be wrong with my baby. 

So what comes next? 

 I've been reading everything since our ultrasound. Hospital reviews and surgery information. I am now fairly knowledgeable about the 3 open heart surgeries Macsen will need - 1 within days of his birth, one within months and another while he's a toddler.

I have even found the hospital - Children's Hospital of Philadelphia (CHOP)- a mere 1000 miles away- that I think will give Macsen his best chance at life. I've read the sheer number of these type of operations a hospital performs each year directly correlates to their success rate - the more they do they better they are at it. If we don't do our best at finding the best place for Macsen and something happens to him I could never forgive myself. 

 So now the questions come and more tears - tears from my 5 year old at the thought of leaving her home - her room with the sparkly paint and butterfly stickers ,her bunk beds we were so proud to find on Craigslist and which doubles as a fort on many occasions, but mostly her daddy who we think will have to remain behind during the month or so before the baby is born and then for who knows how long after Macsen is born. It's all an unknown. I don't know if we'll ever be able to come home again. Will he ever be well enough to brave living several hours away from reputable pediatric cardiologists with experience in this rare defect? 

Always a lover though my 5 yr old wanted to name this blog "I Love My Brother"