More Tests

Well false alarm on the labs. Things aren't the best so we're heading back for more tests. Update more later.

Labs and Doctors... the End is Near

Well we went to see the pediatrician today and do labs. Everything went well and her labs look great. She isn't gaining weight, which isn't good, but with surgery coming up in just a few days the doctor didn't want to increase her flow of formula. If she gets too much fluid she could go into heart failure again, and we're trying to keep her healthy until Tuesday. A few obstacles today though, labs weren't ordered so our 6:30 start to the morning didn't go as smooth as I had hoped, and the end of Bailey's g-tube popped open and I now have formula on my shirt and pants. Not a big deal though, it'll wash. I also met a mom of an 11 year old Down syndrome girl today. She was great and very positive. It's nice to talk to people that have positive experiences and understand what you're feeling.

Things are Good... the Countdown Begins

Today was another uneventful day. Bailey is looking great and right now she's in her bouncy chair hanging out with me and Keith. I think she was tired of her boring bedroom and needed a change of scenery. I can't blame her, it's much nicer in here without all the medical stuff in her room. Tomorrow we have labs and see the pediatrician. He and her GI doc are the only two we like. I'm very disappointed with cardiology. We'll do labs around 6:30 in the morning and see the doc at 9:00, then it's off to work for me and off to grandma and papa's for her.

Worried Mommy

Granny got to keep Bailey and Aubrey this morning. Papa and grandma had an appointment. Bailey seems to be doing much better today, but I'm not sure she's going to sleep. She's moving all around her crib right now, being a little noise maker. We're only a week away from surgery and I'm starting to feel my nerves going crazy. We worry so much about her and we try to stay positive, but as the day nears I seem to worry more and more. Thankfully we're getting busier at work so that keeps my mind on other things during the day.

Welcome to the ER

Bailey got to spend the day with granny while big sis and grandma went to gymnastics. Granny doesn't get to see her much during the week, so hopefully she enjoyed their time together. Papa was also there to give granny a hand, but papa gets her every day. What a lucky guy! Later in the day we had a false alarm. Bailey had an "episode" where her o2 sats dropped in the 70's while she was awake and while she was on oxygen. We called her pediatrician and he said "get her to the ER now!" so we did. When we arrived at the ER she was normal again. The doc in the ER called her cardiologist to see if he wanted to come look at her but of course he said no. I'm still very unhappy with the care she's getting from him. I admit, she seemed okay at the time, but it would have been more comforting if he checked on her and gave us a little reassurance. 1 week and 1 day and her little heart will be fixed!

A First... Chuck E. Cheese's

When I got home from work today Keith went fishing with a friend. That meant it was a day for the girls. Aubrey napped for a while and Bailey and I spent some time together. She's looking great! I can't wait for this to be over so we can move forward. If you look past all her equipment she's just a typical 4 month old, making noise and smiling. After Aubrey woke up Great Aunt Dianna, Ronnie, and Great Grandma came over and soon after they left we took a trip to Chuck E Cheese, it was Bailey's first trip there. She didn't seem as excited as Aubrey was, but I don't think anyone could have been as excited as Aubrey. Thankfully grandma and papa joined us because I was a little to brave thinking I could do it on my own. Everything was great until it was time to go. Aubrey was very unhappy! Thankfully, we got home just as bedtime was arriving. We're a little over a week away from surgery.

She Needs This Surgery

We had another good day. Bailey had an appointment with the pediatrician and everything went well. We had a scary moment when her respirations were over 100, but they got much better after waiting a few minutes. I thought for a while we were heading back to the hospital or to another office for tests. Thankfully everything worked out and we were out within a little over an hour. Then we were off to Orlando to take care of a few things I had to do for work. Hopefully she enjoyed hanging out with her mommy, it was a nice little trip for the two of us.