HOME!

Well, Fiona has been home from the hospital for over a week now. They never found any infection or anything so that's good! She was 5 months old on the 20th! Crazy how fast things are going! We talked to one of the surgeons while we were in the hospital and he said that we don't need to put a dressing on her O anymore! So while we were there we tried to leave it bare. Besides it being weird because we had been doing it for so long, it just wasn't working. At one point I sat her up to play with her and then when I layed her back down part of the skin peeled off. The surgeon just told us to put a non-adhering pad on it (which is what we usually use) but to leave it unwrapped. Well then it was just getting junk all over the place and making all of her clothes all gross! So we decided that we needed to keep wrapping it and have been wrapping it since we have been home. He also told us that we could put her in the bathtub! We were SO excited about that! She was in need of a good bath! So Sunday night when we got home from the hospital Fiona got her first real bath. She was really mad for the first couple minutes but then loved it! We have been giving her a bath about every other night and she is getting really good at splashing and getting Daddy wet!

We have been trying to change her feeding schedule around since that is what landed her in the hospital in the first place. While she was in the hospital we went back to feeding her 65cc every 3 hours with 24 cal/oz formula. Last Tuesday we changed it to feeding her 70cc every 3 1/2 hours with 26 cal/oz formula. On Friday we went to 75cc every 4 hours of 26 cal/oz formula (normal baby formula is 22 cal/oz). She was fine on Friday, but then Saturday night at 3 am she threw up (while I stayed up with her all night, which is another story in itself). Then last night she threw up after her 7 pm feeding. This morning she threw up after her 3 am, and 11 am feedings, and then again after her 3 pm feeding. We're not really sure what is going on. It might be that the 75 is too much for her at one time, or she might not be tolerating the jump in calories. Luckily we go to Pittsburgh tomorrow for appointments with Surgery, Pulmonology, and ENT. So besides figuring out why she is throwing up, we should get some answers about everything else too. I will try to update with what we find out in the next couple days!

All Too Familiar...

Well the inevitable happened... Fiona ended up in the PICU at Children's on Wednesday.

So here's what happened: As I mentioned before we changed her feeding schedule and she was getting fed continuously throughout the night. We had been trying to get ahold on the Nurtritionist because she had spit up a couple times and we knew that she was getting too much for her little belly to handle. Well Wednesday morning at about 3am she spit up, ALOT. She ended up aspirating (breathing into her lungs) the spit up. It is one thing for babies to aspirate while they are eating, but to aspirate puke is much worse. So our nurse suctioned it all out, we changed her trach and ties, and got her all cleaned up. We dressed her and wrapped her up, but for some reason she just wouldn't warm up. Her temp was 96. So I called the dr. and he said to take her straight to the ER. I AM SORRY to anyone that reads this that works at ERHC and no offense to you, but we will never take her there again! I understand that they don't see things like this, but it was all just a mess. It took like 10 people to get an IV in her. They poked both arms, both legs, and finally put it in her head. Poor little thing, I felt so bad for her.

Anyway... When we got there her temp was 96.1 and her white blood cell count was high so they decided to life flight her to Children's. When we got here her WBC count was still high, but a little lower, but they were still worried about infection. She was started on antibiotics and had LOTS of blood work done. She also had an EKG and an echo just to make sure nothing was going on with her heart. They also did a chest x-ray to check her lungs for any sign of infection.

All of her blood cultures came back negative, her EKG and echo were normal (for her), and the chest x-ray showed a little irritation, but no infection, so all good news!

She was made NPO (no food) when we got here so she was started on IV fluids. They ended up having to stop her feeds a few times because she was spitting up and even stopped it this morning because they thought her belly looked bigger. But as of noon she was back up to full feeds and doing well.

Keep your fingers crossed that we can go home tomorrow!!!

1 month?!

As of last Thursday, we have been home for 1 month! Wow, I can't believe the days go by so fast!

Fiona is doing good! Her eating is still so-so. The new feeding schedule has been helping a little during the day. We can tell now that she is getting hungry (sometimes, not at every feeding though). But at night we are having some issues. One night she ended up spitting up about 1/3 of her whole feeding, which is alot, about 100 cc. A couple other times she has spit up a little here and there. But the past few nights our nurse has noticed that she just has formula sitting in her mouth. She doesn't get bottle fed at all during the night, just through the tube, so having any in her mouth is weird. We're figuring that her belly is getting so full that it is just backing up the whole way into her mouth, which I'm sure is not a good thing. I tried to call the nutritionist today but of course no one called me back yet. UGH, so frustrating!

Her breathing status is also still so-so. She is back on oxygen. We had her completely off for about a week and then put her back on. But everyone has said that it is something that is going to fluctuate.

We had a day out on Sunday. I went to Ashley's ( Tom's brother's wife <-- haha) baby shower. Tom brought Fiona down right at the end when there were only a few people left. I am still a little hesitant to have her around big crowds of people. And I don't like everyone touching her. I need to make her a sign that says, "Please keep your germy hands off of me!" haha. Then we went over to Uncle Josh and Aunt Ashley's house for awhile. We can't wait til Adelyn is born and her and Fiona can be buddies! We also decided that we are going to have Addie and Fiona baptized together. Fiona is technically already baptized. It was done by one of the nurses right after she was born, but we would still like to get it done in the Church. So that will be in July or August I'm guessing. That is about all of our news for now!

Her is Fiona and her cousin Adriana at my parent's house on Easter. Look at Fiona's chubby little chin, haha! And of course she was sleeping!

Fiona and Daddy sleeping on the chair last night! So cute!

Photo Shoot!

Thanks to Aunt Ashley we had a mini photo shoot one night last week! Fiona didn't like it as much as we did though, haha! I am surprised that we got as many good pictures as we did because she was pretty cranky the whole time!

Happy Easter!!

Yes, I know I am a day late! But we have had a busy weekend! Saturday we went to Big Poppa's (my grandpa) house for Easter dinner with my family. Then yesterday we went to Nana's (Tom's mom) house for lunch then to NeeNee and Poppa's (my mom and dad) house for an Easter Egg hunt and dinner, then back to Nana's for a little bit. While we were at NeeNee and Poppa's house she gave us a little scare. When we are out she doesn't have the humidifier like when we are at home so her secretions dry up in the trach. At 4 it was time to give her her breathing treatment which must have loosened everything up and clogged it causing her to turn blue because she didn't have enough oxygen. Luckily once we turned her oxygen up a little she was fine and I suctioned the goober out of there. We don't need any more of that!

We have a new feeding schedule! She now gets fed continuously from 11pm to 7am at 41cc/hr. We then feed her 65cc at 11am, 3pm, and 7pm. This gives her 4 hours in between feedings during the day instead of 3. It has helped a little, nothing drastic though. Hopefully OT will be able to help. I think I might look around and see if I can find a feeding specialist that we could take her to.

I think I mentioned that when we went to Pittsburgh that we got a new belly support made for her when she's in the carseat. Well it already doesn't fit. Her O is definitely getting bigger. I called the surgeons to see what they thought (actually I just talked to the nurse). She said that as long as she is tolerating her feeds and not throwing up, and still pooping that she didn't think it was anything to be concerned about. She said it's going to grow as she grows. UGH... some days it just seems HUGE and it seems like it is growing faster than she is. I am probably over reacting though!

Speaking of huge, Fiona weighs 10 lbs 4 oz now!! And she is 20.5 inches long! She is getting to be a chubby little thing. She honestly looks like the Michelin Man with her arm and leg rolls haha! She is so darn cute though!

On a side note: Tom has built a deck for us so that we can take Fiona outside now! And he will be putting a ramp on it soon so we can wheel her kid cart right into the house!