This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.
What a crazy couple weeks! A week ago Thursday (the 14th) we lost power in the huge windstorm. A tree from across the street fell and took down the powerlines with it at about 4:00pm. We spent the first night in our house with candles and bundled up expecting the power to come back on […]
Zoe had another marathon day at the hospital. Lots to report….. her echo continues to show improvement in her heart; the thickening is still gradually going away and her BNP score is still low. Dr. Boucek is pleased with her progress. She continues to gain weight (a whopping 12 lbs now) and is starting to […]
Last night Paul went to test drive vehicles so I was flying solo with the kids at bedtime. I put Noah to bed around 7:45 but Zoe kept waking up and wanting to eat or fuss. I was pretty preoccupied from about 8:00 to 9:00 so although I could hear Noah messing around […]
On Tuesday I went into Children’s for labs and a weight check. Her eating has not rebounded much and she’s definately having fewer wet diapers. Ironically she gained quite a bit of weight (so much that it popped her into the 5th percentile for her age). Although I wasn’t going to see anyone in clinic, […]
Zoe had another appointment on Wednesday with an echo, EKG, consult and labs. Hector did her labs again and she didn’t even cry this time! Everything looked very good and the docs/nurses were amazed at how much she’s changed in the last couple weeks. She has found her “squeal” and is now […]