WE ARE HOME!!!!

Can't believe I finally get to post this... we made it home!! (And the even bigger joy is the fact that I can stress over things other than whether or not Emma Kate will be able to take her next breath, or which of a bazillion medications is due next.) We had a long, stressful morning finishing up the packing and getting the room clean- it was especially difficult because the TPN delivery the day before came so late that we hooked Emma Kate up really late... which translates to a late morning disconnect. I think it was around 10am that we were finally able to unhook her and no longer had to have one person dedicated to chasing her around on her "leash." We finally got everything in the cars (thank goodness it worked out to have a second car available and additional help getting home!) and we headed out. It was a bit of a slow start, having to stop to nurse Gretta after only about an hour, but it was good to finally be making progress towards home. Emma Kate did great, aside from about a million chants of "all done" but little Gretta was not a good traveller at all... she had 3 or 4 naps of about 30 minutes each, and for all but one we woke her up with our uncontrollable coughing... argh! About half the trip was spent screaching and the other half was spent asleep or content. It was difficult to say the least. That little girl just does NOT like being in the car! I even ended up riding in the back to keep the girls occupied and there was very little I could do to make Gretta happy. We stopped 3 times along the way, and it seemed to be enough to make Emma Kate happy just to get out of the car (it was frigid!) and walk around, stomping some snow for a few minutes. She really did well.

When we finally arrived home, Emma Kate was soooo excited to see the house and know that Daddy and the kitties were inside! She ended up staying up quite late, she was so happy playing with her toys and opening a few gifts that were waiting here for her. We set up the room to allow me to sleep in the bed with Gretta and Greg to sleep with Emma Kate on the air mattress on the floor. She had a great night, seemed to sleep pretty soundly as far as her nights go! Greg had to get up at 4:30am to get ready for work and I climbed in with Emma Kate and loved a little cuddle time. She even "slept in" till almost 7am and woke up well, which is always so wonderful!

Emma Kate has settled right in, loving her vacuum, doing laundry, playing with a new little dollhouse, loving on the kitties, and helping with Gretta. She's still got quite a cough from this respiratory thing we're all fighting off, and I can't wait until she clears it and has that wonderfully silent breathing again- what a blessing that is. I pulled out the video camera to record her talking on the phone, pretending to call Daddy and saying "Daddy........ home......dinner" as if telling him dinner was ready- it was too precious! When I went to replay it for her (she loves to watch her movies) I was reminded that I had actually recorded her breathing the day we took her to the ED on Halloween. It was really scary to see her breathing that hard again and I am so incredibly thankful that we don't have to go through that any more. How terrifying.

We are set up here at home to continue her TPN/lipids, and have a home health nurse coming weekly to pull blood and change her PICC dressing. We're going to be working with a local pediatric GI doctor here to manage her TPN and feeding, and we will meet with his office on Wednesday. We're hoping that he will be able to arrange things so that we don't have to run any TPN while Emma Kate is awake, which will make life so so so much easier. It's just so hard to have to have one dedicated person to chase her around with the pack of fluids and pumps when she is hooked up. It would be much easier if she was big enough to carry it herself! Until then, we're still working on eating eating eating and drinking drinking drinking...

The weather was nice enough today for us to get out for a nice walk with the girls for the maiden voyage of our double stroller, it was wonderful to get out in the (chilly) fresh air and to walk! We're looking forward to even warmer weather this weekend and to be able to get out even more!

It's WONDERFUL to be home!!!!! And so wonderful to feel secure about Emma Kate's airway!