Song...

This is a song I found on youtube. You might need some tissues, but listen to it. It is an amazing song!

http://www.youtube.com/watch?v=DJOSMB0QhFY

It's Sunday Already?!

Fiona was 4 months old on the 20th!!

Our days seem to go by so fast here! It is crazy! I have been horrible at keeping this updated! So let's see what has happened since the last time I posted...

Last Saturday was quite a crazy day. We don't have a nurse during the day now on weekends. So last Saturday Tom got up at 7 when our night nurse left. I was kind of half sleeping but woke up to him banging on the wall. So I threw on my robe and ran out to the living room. I'm not even sure what he said to me, everything is kind of a blur because it happened so fast. But I picked Fiona up out of the crib and she was blue and limp and unresponsive. Tom had been trying to get her oxygen back up, but it wasn't working. He was getting the stuff together to suction her but then we decided that we needed to do an emergency trach change in case it was clogged. So we did that while I was holding her (pretty sure that is not how you are supposed to do it!). Sometime in there he called 911. She was trying to ask him all sorts of questions but he was trying to suction her, so he just yelled that she had a trach, was blue, and our address and threw the phone on the coffee table! So after what seemed like an eternity we got her oxygen and heart rate back up to normal. She was fine by the time the ambulance got here. That was probably the most scared I have ever been in my entire life.

We had our first trip to Pittsburgh on Friday for an eye appointment. She had been seeing them every 2 weeks because the vessels in her eyes weren't fully mature. But they are mature now and we don't have to go back for 6 months! We then went to see OT to get a new support for her O that we use in the carseat because the other one doesn't fit anymore. We're not sure if the O has gotten any bigger, but it has definitely changed shape. She slept the whole way there and the whole way home!

She has been doing really well with her oxygen requirement. Today we have had her oxygen turned completely off (so that she is breathing room air) and she is doing great with it. That might be the first thing we can get rid of! Eating on the other hand has not been going so well. She was going in the right direction and then all of a sudden stopped wanting to eat. She hardly takes anything for us by bottle now and we have no idea why. Hopefully the OT is going to be able to get her to eat.

What a Stinker!

About 1/2 an hour ago Fiona thought it would be a good idea to pull her NG tube the whole way out of her nose! A couple times she has gotten her little finger in there and pulled it out a little bit and we just push it back in. But today she pulled it the WHOLE way out. And the funny thing is, she was sleeping! Just yesterday she found her face, haha. She has been touching it non stop. Even when she is sleeping! I knew it was going to happen sooner or later. I wish we could get that dang thing out of there so we didn't have to worry about it!

Yesterday Fiona had her Early Intervention assessment. They were very interested in her! None of them had ever seen an O. The things we will most be working on are her bottle feedings and strenghtening her neck muscles (although there will be other things too). She will have Occupational Therapy (for feeding) twice a week and Physical Therapy (for everything else) once a week for now. We can increase things as we think she needs it.

She got her 2nd RSV shot today. She was not a happy camper. But she was only mad for about 5 minutes and then fell back to sleep! I'm pretty sure RSV season is over in April so hopefully she won't have to get any more of those. I'm guessing that she will still be considered high risk next season so she will probably have to get them next year too.

Casey (our day nurse) and I took her for her first walk yesterday. It was so nice out! I can't believe I didn't take a picture of it though! If I had $1 for every person that gave us a funny look, I would be rich. Yes, I know, it is something that people have never seen before, but there is no need to stare and give funny looks. Ugh!

Settling In!

We are definitely enjoying being home! And Fiona is adjusting very well. Her heart rate is the lowest it has been in probably a month and I think it's because she is getting comfortable here and knows that someone is not going to wake her up and mess with her or poke her all the time! She is such a happy little thing! You would think that with all of her issues that she would be mad or cranky all the time, but she's not. She doesn't cry much. The only time she really gets mad is when she has gas or has to poop, poor thing. She has been having a hard time. We think it is because she is getting too much iron. Her multi vitamin and her formula have iron in them and that is probably too much for her.



We have been hearing LOTS of sounds from her lately. I think I might have explained this before, but she has such a big leak - air goes out around the trach and up through her vocals cords and back out her mouth. It happens alot when she is sleeping because her airway is much more relaxed and there is alot of room around it. We are thinking they are going to have to give her a bigger trach at our next appointment. Which kind of stinks because then we won't be able to hear as much. But it will be better for her.



We had our first appointment on Thursday with our pediatrition, Dr. Gorlowski. So Tom and I took her out for the first time. Thankfully it was nice out! We had some issues with the battery for the ventilator, but other than that everything went well! She now weighs 8 lbs 13 oz!



Her belly is looking great. There is only a small spot that is still granulation tissue, which has been like that forever!



We have lots of appointments coming up. She has to get her regular shots and her second RSV shot at Dr. Gorlowski's. Then we go to the Opthamologist on the 26th, Pulmonology, ENT and surgery on April 27th, Cardiology on May 11th, and Urology on May 26th!


She loves her swing! She fell asleep within 10 minutes! And she loves that monkey! We use it to hold up the vent tubes and then she plays with it and holds onto it!

Priceless!

this was my facebook status when we got home!

Prenatal Care: $20,000
Life Flight to Pittsburgh: $14,000
98 Days in the NICU: $300,000
Home Care Equipment: $50,000
FINALLY Having Our Baby Girl Home: PRICELESS!!!!

We're FINALLY Home!!

SOOOO sorry for not being able to update! The stupid iPod would not let me post on here for some reason, and the computer at TIC had a virus!

ANYWAY... we are home!! We didn't come home last Wednesday like we thought we were going to because of some stupid paperwork and insurance b.s.! We got to stay over night with her for 5 nights in our "nesting" room at TIC. Tom and I took turns staying up with her and sleeping. It was nice being able to do that. Things have been really hectic since we have been home. We got home on Monday around 5. Tom, My parents and Toni and Boo were here to greet me and Fiona when we got here. I don't think I mentioned before that they had to bring her home in an ambulance. Just their procedure I guess. She has done really well adjusting to home. She has been sleeping alot.. I think that first day wore her out! Having nurses here is kind of crazy. For the first two days they were here 24 hours. Today our nurse left at 3 and it was the first time we have been alone with her since being home and it was so nice! Not that we don't love having company, it's just nice having just the 3 of us here (and Zues, I guess haha). We have SO much stuff! Our living room is jam packed, I don't think we could fit one more thing in here. We had to set her crib up in here so the nurses can be with her over night. Her bedroom is upstairs so that wouldn't work out very well. So besides the crib, we have the ventilator, feeding pump, 2 plastic totes for supplies, another little wicker thing for clothes and blankets, a huge oxygen tank, plus our regular furniture!

We are so happy to be home! We have lots of appointments, with our first one being tomorrow with our pediatrition, Dr. Gorlowski. It will be an adventure taking her out for the first time! Hopefully things go well!

Isn't she adorable?! One of our nurses from Children's came to visit us at TIC and brought her this outfit! Thanks Adrienne!