Back at St. Joe's

Well Bailey was breathing rapid again so we took her to St. Joe's ER. They decided to admit her to the PICU. We don't really know much. I hope this doesn't become a trend. I really want to keep her home and not have several little trips to the hospital. We still have 2-3 months before surgery.

Work? Already?

Another busy day. I had to go to work for a few hours to meet my new DM. I still have a few weeks left of leave, but I think I'm ready to get back. Bailey is doing very well still. We have an appointment with the pediatrician tomorrow, and Aubrey has one today for her 2 year check-up.

Swallow Study

Did I mention this is a busy week? Well today we had a swallow study at All Children's in St. Pete. It went okay, but they couldn't get Bailey to take much by mouth. They did notice that when she did take something by mouth she aspirates. They've told us to discontinue feeding by mouth and set up feeding therapies.

Happy 2nd Birthday Aubrey!

Happy Birthday Aubrey!
Bailey is still doing very well. No appointments today for her. I had a follow-up with my doc and everything is going well. He's upset that her prenatal screens didn't show the Down syndrome or heart defect, but now that I've dealt with it I think I'm happy the tests didn't show anything. I can't imagine spending my pregnancy being as worried as I've been this past month.

Appointments, Appointments, Appointments

Well this is going to be a busy week. Thankful I still have some time before I have to return to work. We had an appointment with GI and cardiologist today. Everything went well. I'm not too happy with the cardiologist, but we'll see how things work out with him. Maybe we're just getting off to a bad start. The GI doc is great. He explains everything so I can understand. He said they may do a G tube for Bailey if she doesn't start eating by mouth. He also wants to schedule her for a swallow study. He said she'll be okay with the NG tube for a few months, but if she needs help eating much longer than that we may want to consider the G tube.

She Looks Good... REALLY!

Well things are still going great with Bailey. She seems to be feeling better each day. We do, however, have a nurse that was very concerned the first time she saw her. I don't think I was able to convince her that Bailey really does look good. She called the pediatrician and had him worried, but it all ended up working out.

We're Home!

Well we were sent home today from Lakeland Regional. Everything is going well. Bailey is doing fine and has a NG tube for feeding. We will also have a nurse come to the house for a few weeks to help us learn what needs to be done to take care of her. We're so happy to finally have her home, hopefully things will continue to look up for her.

I'm So Frustrated

Well Bailey has an ng tube now and if we can't get her to eat she'll be going home with one. She seems to be doing well though. She also has a horrible diaper rash due to the antibiotics she was on. The nurses are trying to "teach" me how to feed her. This really bothers me because it seems like they think I have no clue what to do. They've showed me how to hold her and how to hold the bottle, do they not think I tried EVERYTHING before taking her to the doctor? Well anyways, she's looking great and hopefully we'll be home in a few days.

We're Out... oh, no Wait... We're Back in

Another long day. We were released from St. Joe's, but we kept telling them she wasn't eating. When we got home we still weren't comfortable with the fact she wasn't eating so we called her pediatrician and he asked us to bring her in. When we got there he called the cardiologist and they decided to admit her to the PICU at Lakeland Regional. They're going to keep an eye on her and make a decision on what to do to help her eat.

She Isn't Eating

Things have been quite the past few days. She no longer has a ng tube, but she isn't eating as well as she should. We told the doctors several times that she wasn't eating well, but they're still planning to send us home tomorrow. I don't feel too good about this.