A Little Tummy Ache

Bailey is doing very well. She's gone almost 24 hours without oxygen! We're SO excited! Hopefully this will continue and we'll be able to keep enjoying our little girls face without tubes and tape. We're still having tummy issues, which I've tried resolving myself, but I believe if we don't see a little something soon she'll be back to the doctor Monday or Tuesday.

Destructive Two Year Old

This will hopefully be the last update for the week. Bailey is still doing very well. She's have some tummy issues and if I can't get that resolved tonight she has to see the doc again tomorrow. I never thought I'd want her to poop, but I really do! Go ahead, laugh! Her appointment with the pediatrician went well. He was a little concerned because respirations were high, but they didn't stay high for long. He wants us to find and see a new cardiologist next week. So I guess that'll be tomorrows project. We're going to try dinner out with both girls tonight. As I'm sitting here, Aubrey is destroying the house. Does it get better when she's three?

Thank You

This will be a quick update because I have an appointment in about an hour. Bailey went to her cardiologist today. Thankfully, we're going to find a new one and never see him again. She is doing very well. Her o2 sats were 95, which I've been told is okay. They want it above 94. She still dips down when she sleeps and occasionally when awake so that's the only times she's needing oxygen. Her weight is great... she's a chunk! Welcome to the family, eh? BP and respiratory rate were good. I asked him about PT restrictions because of the surgery/incision and he said that he's stepping into the backdrop with her and that GI can make that decision. He said he'll just follow her once a year and do necessary paperwork on her, but I had no clue her GI doc would tell us if she has any therapy restrictions because of her heart surgery (okay, I'm being a bit sarcastic). Then he saw her stitch from the chest tube and asked if it was his job to remove it. At that point I just wanted to do it myself, and actually I probably wouldn't have made her bleed as much as he did. There is more, but I'm done with this rant. So back to Bailey, she's doing great, isn't crying as much, and is with her grandma and papa right now. Tomorrow we see her pediatrician and he is my favorite doc of all, so hopefully I can get some answers from him.
Also... I want to thank everyone for everything they've done. I appreciate all the thoughts and prayers and generosity everyone has shown my family. It has helped having support from friends and family and without you guys I would have been lost.

No Bottle Yet

We had our GI appointment today. Bailey was tear free for the entire appointment! She was wonderful, even when he pressed on her abdomin. She's such a strong little girl. He kept her meds the same for reflux... reglan and prilosec. He doesn't see her taking a bottle for at least 3 more months. He's concerned about her aspirating and also wants her to see speech pathology and get another opms (swallow study). We follow up with him in 2-3 months and hopefully we'll be able to try the bottle again.

It's a Busy Week

Bailey cries... a lot! She doesn't seem to be comfortable, but when you find that perfect position she better be left alone or you'll be searching for it again. We have an appointment tomorrow with GI, Wednesday with pediatrician, and Thursday with cardiologist. That will be our last appointment with her cardiologist. We're going to change to a better doc. Keith and I went back to work today so she spent today with her grandma and papa. They enjoyed having her again.

We're Home!!!

We're home! It's amazing how quick our little girl recovered. She's amazes me every day. I can't wait to watch her and Aubrey grow up together. Aubrey's going to be an excellent big sister, and Bailey will be an excellent little sister. They'll be able to learn so much from each other.
Bailey did come home with oxygen. I'm not sure how long she'll need it, but the doctor doesn't feel it will be very long. I guess we'll have to see how things work out for her. At least her heart is fixed so if there is an issue with her lungs we can get through it too. I do know some children that have had to come home with oxygen, so that makes me feel a little better.
Well grandma and papa just brought Aubrey home so I'll update more later.

We're Going Home... on Oxygen

We're waiting for the doctor to come check Bailey. It looks like we're going home today. Her echo and chest x-ray look good. We'll leave here and go to RMH to clean our room, then we'll be home! Aubrey has a birthday party to go to today and then she'll be home too. Bailey's looking good, but she'll still be going home on oxygen. Hopefully she won't need it for very long.

Lots of Visitors

Bailey did very well today. She and her daddy had some alone time today. I had some things come up; however, I spent some time with her tonight. Dawn came to visit and gave us some goodies and grandma, papa, and Aubrey also came to visit. It was nice seeing Aubrey again, but she really wanted to see "Belly" (Bailey). We were outside the doors for PCICU and she kept saying "see belly, see belly" hopefully we'll be home tomorrow and they can see each other.

All Is Okay

We just got back from our evening visit with Bailey. She is still looking pretty good, but the reflux continues. She is actually spitting up now, which she didn't do before. She still seems to have a little congestion, but the nurse says her lungs are clear, good news! We'll see what tomorrow brings and hopefully she'll be losing the chest tube.

I Want to Hold my Baby

We spent most of the day at the hospital and we're back at RMH now. Bailey is doing okay today. If I had to compare today to yesterday I would say she isn't as comfortable today. The nurse tried morphine and it didn't work so he gave her a sedative and she finally fell asleep. She's also refluxing again and I'm sure that is quite painful for her little body. I wish this could all be over for her. She's been through so much for being just 4 months old, but compared to many other children there, she's in good condition. She still has her chest tube and now they're hoping to have it out tomorrow. I can't wait because I want to hold her so bad. Melissa came for a visit this afternoon. Keith and I look at each other day and night so it's nice to see different faces occasionally. We miss Aubrey terribly, but she'll hopefully be spending tomorrow afternoon with us. We're heading back to the hospital tonight so if there are any changes I'll update later.

Things are Looking Good

We just got back from the hospital and Bailey's color looks better than it did earlier today. She really seems to be recovering well. I hate to get too excited about her recovery because I know it is too early to feel this way, but I really feel good about this. We are still at the RMH and I must say this was one of the best decisions we've made. I still would rather be at the hospital with her. She gets more agitated when we're there because she hears our voices so it's best for us to give her time to rest. Which is really difficult for me to do.

Resting and Eating Again

Bailey is still doing great. She's snoozing right now and just looks so peaceful. Her color isn't as good as it was yesterday, but I guess it's to be expected. Her papa came to visit today and that was a nice surprise. He wasn't able to see her last night because Aubrey wasn't a happy little girl and needed to go home so at least he got to see her off the ventilator. Keith and I will stay here for about another hour then we'll go to RMH for dinner and probably back here one more time for another visit.
It has been suggested that we not stay the night here, and that is very difficult. Last night was her first hospital visit where she had to stay the night alone. I usually spend most week nights with her when she's in and Keith and I usually stay on the weekends with her, so it was very difficult to leave her last night. She did have 2 nurses just for her last night so I know we left her in good hands.
They've removed most of the meds she was getting through IV, and she's getting pedialyte through her g tube. If she tolerates it for 2 hours they'll start giving her formula again. I'd love to be able to bottle feed her soon, but I'm not sure if they're going to allow that or if they want to do another swallow study before we start bottle feeding.

Ventilator? Gone!

She looks great! She was on the ventilator until around 10:15 this morning and now she's OFF! We're so excited. She was awake soon after and seemed a bit agitated, but they gave her morphine so she's out. Lucky girl, eh? Hopefully everything continues to go well for her and she gets to go home within the next week. Her color looks great, and I can't wait until she can be held. I tried yesterday to hold her as much as possible because I remember past visits when we had to go several days without holding her and I realized then how much I enjoy having her in my arms. Thanks again to everyone for their prayers, and thanks to those that have been up here. It meant a lot to have family and friends visit yesterday.

We'll See Her Soon

Final update for a few hours probably. We'll get to see her in about an hour and I can't wait! Everything went well so now we just have to get through recovery.

Where's the Update?

We were told if surgery went past 4:30 they would come update us, but there isn't an update yet. I wish she hadn't told us that because now, I'm of course, worried. I wish I could be there with my little girl... Well they just called and surgery is complete so we're waiting for the doctor to come talk to us.

All is Okay

They are half way through surgery. Hopefully they will be finished in the next hour and a half. Everything is going well but the details will come from the surgeon. These past few hours seem to be dragging on forever! I can't seem to keep myself busy enough.

Surgery has Begun

Bailey has been with the surgeon since noon. The nurse just came in the waiting room and told us that they are beginning the surgery. We were told it would take about an hour to do the IV, breathing tube, and all other prep so I guess they're on schedule. She seems to be doing very well and spent a large part of the morning sucking on my shirt. She even rolled over today!!! We're so proud of her. I will say giving her to the nurse earlier today was one of the hardest things I've done. She's had surgery before, but it wasn't as complicated as this surgery. Thank you all for your prayers. We truly appreciate all the support we've had. We have lots of family here with us today which has been nice.

The Day Before the Big Day

Well tomorrow is Bailey's big day. This is something we've been waiting for since she was born. It's difficult to say you want your child to have surgery, but I've heard how quick you see improvement. Bailey has struggled since she was born and it's time for her to get a break. She deserves it!
We made a visit to work this morning to tie up a few things and then went to RMH to get a room. Thankfully there was something available. I will post more about our visit here later, but everyone here is great.
Then we went to St. Joe's for pre-op. Things went well and they were able to get blood on the first try! That's great! Usually they have to dig around until they get something good. Keith got there before they started doing her tests so I was able to leave for a while to finish running errands.
Surgery is scheduled for 11:00am tomorrow and will take about 5 hours. I'll update as often as I can.

Will This End Soon?

Bailey is doing very well still. Her reflux was quite active today and she needed a little oxygen while awake. Aunt Kelli got in town today so we spent the evening with her. Our bags are packed and we're ready to spend time in Tampa. We'll leave tomorrow morning and tie up a few things at work then check in at RMH if we can and then go to her pre-op appointment.

Talking and Football... She's Part of the Family

Bailey seems to be doing great today. She's talking (blabbing) and looking at everything around her. Today, she's watching football with her daddy. Soon she'll be saying "Go Gators" just like her big sis. Just a few more days until surgery. I can't wait until this is all over.

She Just Doesn't Look so Good

The second labs didn't come back great either. The cardiologist decided to reduce one dose of her lasix. Her pediatrician wants us to call him tomorrow with an update. Right now her respirations are at 99 and she's needing oxygen while awake. She should only need it when she's sleeping. She was so great today. It took several people in the lab to get blood and she was just wonderful. Even better than some of the adults. I just can't wait for next week to be over. I never imagined I would have a child that I wanted to have surgery, but from what I understand her health will be so much better.

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.