Happy 1st Birthday!!

Yesterday my baby girl turned 1 year old! I didn't have time to update yesterday, we had a LONG day! She had the most wonderful party. It turned out great. We are so lucky and thankful for our families and everyone who helped make her birthday so special! I think we might have to add on a room for all the stuff she got!

I can't believe that a year ago we were still in shock that Fiona had been born already. She has gone through so much in this past year, but yet always has a smile on her face! I am glad she won't ever remember any of it.

HAPPY BIRTHDAY FIONA!

I will add some pictures of her party later!

Appointment Update and O Pictures

She was laying on the floor watching Ellen, which we watch every day :)

Last Thursday we had a trip to Pittsburgh. First we saw Neurosurgery. The appointment went great! They said that nothing is wrong and they don't ever need to see her again, yay! The doctor actually said, "Congratulations, you don't need a Neurosurgeon! I don't get to tell many people that!" They were mostly checking to make sure she didn't have excess fluid and she doesn't. Her head is a little big, but is in the 50-75% range which she said is still normal. We are so glad that we can cross that one off our list!

While we were waiting for the doctor to come in she was put on her new vent. The main reason we decided to change ventilators is because of the battery. The old one had a 15 lb battery that we had to lug around with us if there was no place to plug it in. This one had an internal battery and a tiny little detatchable battery. It will be so much easier! And the other reason is because the old one had 2 hoses and this one only has 1. Less for Fiona to play with! (In case anyone would like to know we changed from the LTV 1150 to the Trilogy 200.) She is doing great on it and yesterday we changed her Pressure Control from 12 to 10. She has been doing awesome with her "sprints" off of the vent. Today she was off for 5 hours and 45 minutes twice! She is chugging right along and we have high hopes that it won't be too much longer until she is off that dang thing!

Those were supposed to be the only 2 appointments we had, but while we were in the waiting room I called her surgeon to see if he could fit her in. Her O has had the most awful smell to it. Not a sweet smell like before. It was just a BAD smell. He is so awesome and got us in right away. He had to "debreed" her O (he had to take off all of the dead, black skin that was causing the smell). I couldn't even watch. It wasn't hurting her because the skin is dead and underneath it is just the Gortex patch. She was just really mad because the nurse was holding her legs down. Tom thought it was the coolest thing ever though, haha! Now it looks and smells much better!



CAUTION: O PICTURES BELOW!!




Before the debreeding:



After the debreeding:

It is so hard to get a good picture of it now because she moves around so much! But you get the idea!

P.S.: I can't believe she will be 1 in 4 days! Be on the lookout for a major picture post, haha!

It Finally Happened...

The very thing we have been trying SO hard to avoid... Fiona pulled her trach out yesterday! I don't know what we are going to do with that little stinker! She actually un-velcroed one side of the ties and then pulled on it enough that when her nurse went to take her onesie off, it came out! Luckily she has been doing so well with her breathing that her sats didn't drop too far before we were able to put a new one in. She has been doing amazing being off of the vent. We are increasing her time by 15 mins twice a day. So today we were at 4 hours twice a day. Her sats don't even drop when it is time to go back on. She usually makes it to the time she is supposed to. Every once in awhile we have to put her back on sooner because she starts coughing alot. When she is on the vent she is also on a humidifier, so when she is off she gets really dry. I bought a humidifier to put in the living room and today it seemed to help a little. But alot of times she coughs so hard that she ends up throwing up. And we DO NOT need her throwing up! We have to go to her Pedi once a week for weights checks now and last week she hadn't gained any weight since the week before. We just don't know what to do because we are getting her to each as much as possible. We even started giving her some Pediasure which has even more calories than her formula and it's still not helping. She will be a year old in 11 days (which I can't believe!) and only weighs 12 lbs 12 oz!
Thursday we go to Pittsburgh for an appointment with Neuro Surgery. I think I mentioned that in the last post but wasn't sure when we were going yet. I won't go into detail about it, just keep her in your prayers and hope for good news! I will update and let you all know how it went.