Happy Halloween!

Lots To Catch Up On!

This was during her 3 hour sprint off the vent. Laying in mommy and daddy's bed!

Sucking on her baby doll's binky, haha!

This is Tom's hat that he wore home from the hospital when he was born!

I know, I am being a blog slacker again, haha! But Fiona is doing so good!

We had a few appointments, so I will update you on those. On the 14th we saw Cardiology and her surgeon. The Cardiologist (Dr. Webber) loves her (just like everyone else does!). First she got an EKG done and thought it would be funny to try to pull all of the wires off the whole time! The doctor came in to talk to us and decided she should also get an Echo done. She was not very happy about getting the Echo. Tom had to pretty much hold her down, poor thing. The doctor came back in to talk to us and said that quickly looking at the pictures it looks like her ASD (one of the holes) is either gone or just a tiny pin hole, yay! But the other hole, the VSD, is still there. It is a "moderate" size (the holes will either stay the same or get smaller, they can never get bigger). He said he thinks her body is still trying to close it, but it isn't closing as fast as it would in other babies because she isn't growing as fast. He is still confident that it will close with time.

As we were waiting to talk to Dr. Webber, Dr. Burns came in to look at her O because we had been at Cardiology longer than expected and he was late for a meeting! So he came to find her. He said everything looks good and he is pleased with how everything is going. I then told him that she had a fever the night before and that morning before we left. He said the very thing we DID NOT want to hear- that he wanted to admit her. Then after talking about it for a few minutes he decided that she should get a chest x-ray and if that looked good we could go home. She is teething and we all hoped that the teeth were the reason for the fevers. He just didn't want to miss something if she really was sick. Well obviously she didn't get admitted and we came home. That night when we got home she had a fever of 101.5, but it went down with some Tylenol and she hasn't had one since. And she got a new tooth! One of the top incisors. She is going to have fangs for Halloween, haha!

We had more appointments on the 19th. First we saw Pulmonology and ENT (they do a joint airway clinic). Dr. Aujla (her pulmonologist) is also very pleased with her progress. Everyone was kind of worried about how the surgery would affect her lungs, but it has actually seemed to help her breathing! She said she can tell that she is taking deeper breaths than she used to. She turned her pressure control on her vent down to 14 (from 18). The pressure control is the pressure that it takes for the ventilator to giver her a breath. ENT did a scope and said everything looks great.

After that we saw Dr. Burns again. He just wanted to check up on her and make sure she wasn't still having fevers or any other symptoms.

Then she had to get a head ultrasound. I have always thought her head was kind of funny shaped, but we have just been blaming it on the fact that she layed in a bed for 3 1/2 months. He was concerned about the overall circumference of her head. Well I just got the results today. Her IVH (brain bleed that is very common in preemies) has resolved itself! But her ventricles are still enlarged. I won't go into detail about what this usually means because we are hoping for the best. And Dr. Burns said that he doesn't think it is anything to be concerned about, but is still referring us to Neuro Surgery for a consultation. I will find out tomorrow when we have to go to that appointment.

So back to the ventilator. We had to get a blood gas on Friday to check her CO2 since we turned her pressure down. Well it was one of the best ones she has ever had! So the dr. decided to do some more weaning. We turned her pressure control and breaths per minute both down to 12! We are making some progress! We are also supposed to be doing what are called "sprints" where we take her off of the vent for a few minutes here and there. The longest she had ever been off was 10 minutes. So our goal was to get her up to 15 minutes a few times a day. On Saturday morning we decided to try it. I didn't think there was any way we would get to 15 minutes. Well she ended up being off for 3 HOURS!! And she did great with it- no nostril flaring or breathing hard or anything! She started coughing alot and that's what made me put the vent back on. On Sunday she was off for 2 hours, but broken up into a few different times. So I called the dr. yesterday and she thinks it might have been a little too much, too fast. So we are supposed to increase her time off by 15 minutes each day. The greatest Christmas present would be to have her off of the vent during the day! Keep your fingers crossed!

I can't believe she is 11 months old and that her 1st birthday is coming so fast! I am going to try to make a tutu for her to wear for her big day! I am having fun with all the Princess decorations and stuff!

Pseudomonas?

Last week we noticed this odd strangely sweet smell coming from Fiona's O when we were doing dressing changes. By the end of the week it was so bad that you could smell it through the wrapping and her clothes. So Thursday I called her surgeons office and talked to the nurse. I think she thought I was crazy! But had to talk to Dr. Burns and then call me back. Well Friday morning I still hadn't heard from them, so I called our Pediatrician. I think that nurse also thought I was crazy and just told me to get ahold of someone in Pittsburgh. Thanks for the help. I called back to Dr. Burns' office and left another message. They finally called me back about 5 pm on Friday. The nurse explained that she has Pseudomonas bacteria on her O. The bacteria just being there is different from it being infected, but if untreated could turn into an infection. So the treatment is to put an acetic acid solution on it for 15 minutes 4 times a day. This is not as easy as it sounds! We were so used to only doing her dressing change once a day before surgery. Then after surgery we went to doing it twice a day because it was oozing and bleeding and we had to keep it dry. Well now we have to do it 4 times a day along with the acid treatment. Fiona is not a fan of the dressing changes! It doesn't seem to hurt her in any way, but we have to hold her arms and legs down so she doesn't get them anywhere near her O. I just hate that the poor thing can't have a schedule of her own. Like right now she is sleeping, but still needs her O done one more time and also needs her breathing treatment and suctioned. She doesn't ever just get to sleep when she wants to between those things and therapies. ugh!

Other than the Pseudomonas, she is doing really well! She is pretty much back to her normal self, laughing and smiling all the time. She started laughing when you tickle her. We finally put her in her walker yesterday for the first time since surgery and I think she missed it! We were worried about how her O was going to fit. It is much smaller now, but sticks straight out in front. Whereas before it flopped off to the side in her walker and jumper. We haven't tried the jumper yet, but she fits nicely in the walker. She has also started clapping and it is so cute!