We'd heard from Miracle Flights and they said they could fly us home on Wednesday. Yay! We had a free day in Boston on Tuesday and decided to make the most of it. We decided to head over to the Public Gardens to ride the Swan Boats. We'd seen them when we visited while I was pregnant and they were so pretty. Julianne LOVED the Swan Boats! She is still saying, "I wanna ride on swan boat!" Its going to be a long time before we do that again, baby girl.
After the Swan Boats, a walk around Boston Common and lunch we decided to walk along the Freedom Trail. This is a marked path that takes you past many of the historic sites in Boston. It worked out perfectly. Julianne napped for a good part of it and was content in her stroller the rest of the time. We didn't actually finish the whole trail. We stopped when it lead across the Charles River and headed back to the Devon Nicole House. It was really great and a beautiful day for a long walk. I think Julianne was just happy to be out of the hospital. Speaking of that, I forgot to post what she said when we left the hospital! We were about a block away from the hospital on Monday when all of the sudden Julianne said, "I'm so happy!" I said, "Did you just say, 'I'm so happy'?" She said,"yeah!" Oh, it just was the the sweetest thing...almost made me cry.
We left Boston on Wednesday and it was, indeed, "bittersweet" as we'd been warned. Really, its just such a special place to me. I am so completely happy to be done with this surgery, but just a little sad to know that we will not be back for (God-willing) a long, long time. I can't explain it. If you've been in our situation, you probably know the feeling. I am, however, SUPER HAPPY, and not even a hint of sad, to be back home and sleeping in our own beds. God is good.
Our travel day was fairly uneventful. Julianne tried to run behind the counter where we checked our bags yelling, "GET THAT BOTTLE!!" She was trying to get the fire extinguisher hanging on the wall. Ha! Security was quite complicated this time because we had A LOT of liquid meds with us. They had to swab them all and then left one of my zip-locs open and the med leaked all over our bag. Note to self, check that all the zip-locs are closed after security inspects them. The first flight on Wednesday went...uhm....not so good. Julianne was in rare form. I'll leave it at that, ha ha! The second flight was much, much better and we arrived in New Orleans around 6 PM. We stayed at my aunt's house that night and then headed home for good yesterday. It was so great and my parents and grandparents even had a little welcome home party for us, complete with Raisin' Canes chicken!
Now, we're relaxing in our own living room. Julianne is sound asleep. She's been having a little fever pop up here and there and having some nasal congestion. Kent had the same thing yesterday, so we're thinking and hoping its just a cold/virus. Dr. Crapanzano felt we could probably ride it out and see him on Monday morning at her follow-up appointment which was already scheduled. So, we're just going to watch and wait. Julianne took a nearly 4 hour nap today! I think she's just "so happy" to be back in her own bed! We're so thankful that she's in there too. Thank you, God. Thank you all for your encouragement, prayers and love for our family. It has meant so much to us. More than I can say....
Its back to normal life now. Kent goes back to work on Monday and has a birthday on Wednesday. Julianne has a follow-up appointment on Monday and resumes therapy the following Monday. We're gradually memorizing the new med schedule (12 meds for now...should go down over time). Julianne is pretty scared of other people (besides her family) since the hospital. I think it will just take some time for her to forget all that has happened. She's also having a bit of a hard time adjusting to "real life". Julianne has been a little out-of-sorts about having to share her mommy and daddy with other people and about having to do what we ask her to do or not do. So if you hear wild screams coming from the back of church (or wal-mart, or winn-dixie) its probably Julianne. I'm confident this will just take time too. She's still sweet and precious, just with an extra shot of "two-ness" right now!
Its funny, but the first surgery required 35 days at Children's in Boston, then another 21 days at Ochsner. The second time encompassed 30 days at Children's. This time was only 18 days inpatient, but it sure felt longer than the others! Its so good to be home.
Each pew has an individual cubicle-like box.
Seriously, Julianne could play on the floor and I could just listen to the sermon. :)