Well it looks like Nora is coming home today! YAY! The team at TMH is working with the home health care people to get her all setup and we hope she will be home by the end of the day! It is a bit scary coming home with pumps, feeding tube, etc. but I have no doubt we can handle it and the excitement of FINALLY getting Nora home overrides everything else. I am sure soon all of Nora’s “extra” devices will become old hat.

Off to the hospital now to get our little girl ready but we will post some more info and pics later today with an update on her travels home.

Our Little Princess put on her tierra and had a little party for her Grammothers birthday tonight!

Nora says “Happy Birthday Grammother! Sorry your not feeling good but we will celebrate your birthday together soon and don’t forget birthdays last all month long !!”

We ALL Love You Lots!

Well today was a good day for poop! It seems Nora’s system is getting back on track after being back on the 20 calorie formula for a few days. Hopefully she’ll be going back to getting a bottle or two a day soon.

We can’t wait to get her home. Nora’s getting stronger and more curious every day. She loves to look at what is above and tries to look at what’s behind her. She loves to get baths and have her hair washed.

Here are a couple pictures of bath time and snuggling with mommy, which Nora and mommy really love!

Nora loves spending time with her NeeNee, everyday and especially on her birthday!

Well today Nora had 1 poop with a bit of consistancy and then 1 big watery one :(  We are hoping tomorrow will bring us more solid poops. Anyone else tired of talking (or reading) about poop yet??

Some hopeful news though… it sounds like Nora’s doctor spoke with the right person at the FDA in order to get Nora approved to use Omegaven and so we are hoping to have her started on it by the beginning of next week at the latest. We are still waiting to hear from Dr. Patterson on how the conversation went but we are hoping it went well and he has good news for us in the morning. I must say I am very disapointed in the FDA’s “emergency” approval process. I would hate to see what the long process is like

Today Nora’s feeding schedule was changed back to all G-tube feedings for at least 24 hours because she couldn’t tolerate the 3 bottles a day with G-tube feedings at night. She had three big watery poops and lost 3 ounces today. But overall she is still doing very well for everything her little body has been through. Dr. Patterson (her doc at TMH) is working with the doctor in Boston (Dr. Puder) to get her on Omegaven as soon as possible, hopefully by the end of this week. The only thing holding us up at this point is getting FDA approval since Omegaven is still a trial drug. As long as things continue to go as they have been the plan is to have her home by early next week. All of the details for home health care are being worked out and the wonderful staff at TMH are getting us lined up to head home. Yay! The next step is to head down to Shands for an evaluation with their gastroenterologist and then up to Boston for an evaluation with Dr. Puder and the team and Boston Children’s Hospital.

Nora loves to be held and snuggle. She can sleep for hours in mommy’s arms.