Freedom!!!!

Lilly (and my husband!) were discharged from the hospital this afternoon. Yay! I drove them back to my aunt's house and after our son woke from his nap, we all went for a walk. How glorious it was to get out during the day and walk!

Lilly had a busy day getting ready to leave the hospital. The pict line was removed from her head. (We got to take the bandage you see in the pictures off once we left the hospital.) That oxygen tube under her nose was removed and she also got a new NG tube for feeding. (I put it in her nose myself. She will continue on the feeding tube for awhile, with formula added into the breast millk. We really want her to gain some weight.
Lilly is on a several medications. I think I have these straight:

- Vasotec - for her blood pressure

- Lasix - keep fluid around her lungs down

- Zantac - make her tummy feel better

- Aldactone - help keep her potassium levels up

- Bactrim - an antibiotic (since she has no thymus)

She takes the first 3 twice a day, the 4th once a day, and the last 3x three days a week.

She has an appointment with her pediatrician back home next Friday. We need to make an appointment with her cardiologist for the following week. She'll probably alternate seeing those doctors each week for awhile. The pediatrician will monitor nourishment and weight gain and of course the cardiologist her heart.

We will drive home to N.C. tomorrow! We can't wait to be back in our own home, all together again. :) Though we could ask for a better place to stay than my aunt's house here.

Lilly (and my husband) were in the hospital for a total of 3 weeks and 1 day. We were really impressed with the care she received at Wolfson's. There were a couple of nurses in particular that were just so caring and went above and beyond our expectations. It was almost sad to leave the hospital! But we'll be headed back in a few months for the open heart surgery.