Going Home -- Again!

We have a going home date - finally. It will be next Thursday before we can pack Gracie up and bring her and all her gear home. Her home ventilater will be delivered Tuesday, and home nursing will be arranged. Deb and I have been checked off on the ventilator and I think the hospital is glad to get us out of there. We are able to switch her off her regular vent and on to the the "travel" set up. To the side is a picture of Grace in her wagon with all her gear. She does not travel light. And yes, she is in there somewhere. If you want a run down of the gear, there is a ventilator, portable suction, two oxygen tanks, pulse oximeter, apnea monitor, battery, ambu bag, and back-up supplies. Oh yeah, and Grace.

She is making big strides in feeding. She took over 50cc of bottle feeding twice today. She also breast fed (from Deb, not me) this evening. Big strides for our little girl.

Passed!

Grace had a swallow study today to see if she is aspirating any of her oral feeds. We are thrilled to report that she passed with flying colors. We are going to start increasing the amount of orals that we give her, although she is a long way from having her NG pulled. She will only take about 10-15cc of food at a time before she quits. The remaining 90 cc has to go via NG. We are still very proud of her and now that we have the go ahead to increased feeds, maybe it is okay to have a goal of getting rid of one more tube.

Gracie's New Friend

Grace made a friend today. Her first real friend, Hope, stopped by and they touched fingertips and giggled today. Well, Hope giggled, Grace mostly blew bubbles out of her nose. Hope is having heart surgery in two weeks and her parents Jen and Andy have become great friends to us. It's a different world having a "special needs" kid. You worry about so many different things than a regular kid. Hope didn't see the trach, or the omphalocele, all she saw was a little baby. A touch and a giggle makes them friends. Hope and Grace. That should get you through the day.

Trained!

We have been trained. Saturday I had to spend 8 hours alone with Gracie proving that I was competent to manage all aspects of my daughter's care. I even had to load her into her cart with her travel ventilator and take her for a walk around the hospital. Today was Deb's turn. I am assuming she handled it much better than I did. I was looking a little frazzled by day's end, but she looked as cool as a cucumber. I was sweating, covered with spit-up and smelling vaguely of sour breast milk. Deb smelled like victory. (She also loves the smell of napalm in the morning - in case that reference slipped by you).
No official going home date. Hopefully soon.

Recent pics

Here are two very recent pictures of our girl. You will see that in one she is taking a bottle. We're so proud! She only get's about 10 cc each feed, and some of it comes out her nose, but hey we are seeing some progress.

Big Day

Gracie had a fantastic day today. She took 15cc of breast milk from a bottle today. This surprised the therapists but thrilled us. She was an ace in her physical therapy sessions and was engaging the whole day. It's nice to see her make some eye contact with us and become more interactive each day. We will continue to coach her along as soon as she gets back from shopping. She needs to buy a gift for the Queen. Hmm, maybe an iPod would be a good choice.