Post-Glenn Follow up

Today was Maddie's first cardiology appointment, since surgery. There were many words spoken by the doctors and nurses to describe her today...wonderful, strong, amazing, a superstar, has good genes :), healthy, pink, beautiful, bright eyed and great,great,great! What wonderful news for us to hear!!! We feel so blessed and lucky. Her x-ray looked much better this time, at almost 2 weeks post-op, her heart swelling was way down and there was no visible fluid retained anywhere. So we are dropping 1 dose of the Lasix for now...now she only gets 7 syringes of different meds a day! Her chest tube stitches were removed and her incision looks so awesome...the nurse thought this was her first surgery, not her second sternotomy! Her sats are hanging in the high 70's, we're hoping her pulmonary arteries will grow some and she'll maintain sats in the 80's until her next surgery. The EKG was good and in the weight department, she just maintained, only gaining 0.2 kilograms. Dr. Chun, our cardiologist since hospital admittance before her Glenn, wants to up her caloric intake to 28 cals and maybe she'll gain better. He said it's tough on them when they're healing up as well as trying to gain weight. I pulled her NG out last Tuesday night (she was gagging and vomiting way too much with it in) and she's been consistently taking her minimum since but not reaching her "goal" for her feeds. Obviously, this is just maintaining calories for her, not making her gain weight. Her current weight was 5.76 kilos or 12.67 lbs and height is 63 cm or 24.8 inches. I'm actually excited for the calorie jump. I'm hoping she won't have to be "force fed" with so much volume now. Her little tummy can only hold so much!!! Now let's just hope she'll tolerate the taste. The higher the calories, the thicker, richer and harder the milk is on their tummies I hear. Good thing we have the reflux med for this. So overall, it was a GREAT appointment! We are following up in 3 weeks...wow!

Since our appointment was at 9am in Seattle, we all went over yesterday afternoon. We did a little shopping for the boys at Bellevue Square and had a yummy dinner at the Cheesecake Factory. Love that place! Staying at a hotel is always so fun for Jace and Cade. It was really nice taking Maddie out, strolling around the mall and enjoying time as a family. Life is feeling much more "normal" for us again. Sure feels good!