This Year is Finally Coming to an End

I hope everyone is doing well. Bailey had her appointment with the opthamologist on Thursday and he determined she needs surgery on her eyes. Other than that she is doing very well. I plan to call after the new year to make an appointment with the surgeon.
Aubrey is doing great. We all went to the zoo today and she really enjoyed herself. Keith and I have been on vacation since Christmas... well I'm on temporary permanent vacation I guess, if that makes sense. We've enjoyed ourselves as much as possible, but it has been a difficult week.
I hope everyone enjoys the new year.
Tricia

No More Doctors, but Some Runny Noses

Happy Holidays everyone! Bailey is still doing very well. Bailey has an appointment next Thursday with the Opthamologist, and then no more appointments for her until the middle of January. Aubrey is still doing very well. She had a cold most of the week, but she seems to be doing much better. I hope you all have a wonderful week and we'll talk to you soon.
Tricia

Doctors, Parties, and Shopping. It's Christmas Time!

Well this was doctor week. Everything went well. Bailey saw GI and he said she looks great. Still no news on when we'll be able to give her a bottle. She also saw her pediatrician and he gave her immunizations.
We're all doing very well. The girls had their Christmas pictures taken last week, and they were so cute! The next few weeks are busy busy busy... as I'm sure it is for everyone. We have our Down Syndrome Christmas party, my dads birthday and of course holiday celebrations with our families. Oh, and of course, last minute shopping.
We took the girls to see a beautiful Christmas display at a local church. Aubrey loves Christmas lights so she really seemed to enjoy their display. We also, for the first time, decorated the tree with HER. That was interesting. She loved decorating, but it was difficult trying to keep her from breaking things.
Tricia

Excitement is in the Air

Well Thanksgiving is over and now the Holiday season has begun. Aubrey seems so excited about Christmas. She loves the decorations, and shopping... but has a fear of Santa. We enjoyed our Thanksgiving. We spent half the day with Keith's family and the other half with mine. My sister was in town so we spent several nights this week visiting our parents. She flew home today and was involved in a minor accident while on the employee bus. Thankfully everyone is okay, but she is a bit sore. I hope everyone had a safe holiday.
Also, please keep Micah in your prayers. He is still in the hospital and it's possible he will be there until his next treatment in early December.
Tricia

Happy Thanksgiving!

Happy Early Thanksgiving all! Bailey had an excellent appointment with the Pediatrician today. We don't see him again for 3 weeks! I'm so excited to finally get weekly appointments behind us. I haven't had to do too much as far as appointments go because my parents have been taking her (it's been busy at work). So, I'm sure they'll be happy to get a break for a few weeks. He increased her feed rate once again, so hopefully she'll start gaining weight.
After the appointment we took a trip to Chuck E. Cheese's and the girls, well Aubrey, had a great time. She was so wonderful, and didn't throw a tantrum when it was time to go home. She's getting brave too. She rarely plays on the slides, but today she made some attempts. I'm so proud of her. She and Bailey both amaze me every day.
Once again, I hope everyone has a great Thanksgiving, we really have so much to be thankful for this year.
Tricia

Heart Worries... GONE!

Bailey had her appointment with the Cardiologist today. It was a great appointment. No more Lasix! We're so happy. Now, we just need to eliminate two more medications and she will be free of meds. Hopefully our appointment next month with GI will end the need for those meds. She's only gained 6oz since last month, but they increased her rate of feed last week so I'm hoping she'll start gaining more. He also said we can put the heart worries on the back burner because she looks so great! Now we just need to get rid of the tube in her belly and we can celebrate even more. We have an appointment tomorrow with the Pediatrician so hopefully all looks good there. We also had a nice day because we spent it with Papa. Hopefully he enjoyed being with us today as much as we enjoyed being with him. Ohh... Aunt Kelli will be here tomorrow for a few days and Aubrey will be SO excited to see her. Aubrey is a small version of her Aunt Kelli. They both have great personalities that we all love.
Tricia

Weight and Eyes

Well everything went well with the Pediatrician yesterday. She got her first dose of flu shots and she'll get her second dose in a month. He's concerned about her vision in her right eye so we have an appointment in December with a Pediatric Opthamologist. She also hasn't gained weight like she should so he increased her flow from 26 to 27 cc's per hour. We're still on tube feeds and will continue with that until I can get feeding therapies for her for at least 3 months. That's been a major struggle for me because I can't seem to get a return call from her early intervention coordinator. It's a great system when it works.
Aubrey is doing much better and if you saw her today you would never know she was covered in "spots" last week. She got Shrek the Third tonight, so she's a happy little girl.

I Appreciate All You've Done

Aubrey is doing better. She still has some spots, but thankfully they don't itch! We're all doing pretty good. We're hoping to stay healthy so we can join our friends for an early Thanksgiving celebration this weekend. We really have a lot to be thankful for this year. It's been full of challenges, more than I ever thought I could handle. But, I now realize how important the support of our family and friends has been in helping us get through this year. I really appreciate everyone for being so helpful and understanding. This will probably be my last update for a few days. Bailey sees the Pediatrician on Wednesday and her Cardiologist next Tuesday. I'll update if we get new info.
Tricia

Bumps, Fever, What Could This be?

Things are still going well for Bailey. She and Aubrey are both taking their afternoon naps. We planned to go to the zoo today, but Aubrey decided she would get sick instead. Her temp stayed around 101-102 the past few days and this morning when she woke up she had little bumps on her arms, hands, legs, face, and feet. So, of course I thought chickenpox! Well we went to the doctor and he looked in her mouth and it's covered with bumps too! Poor baby! So, it seems she has hand, foot, and mouth disease. The doctor said the bumps aren't usually on the entire body, but she decided to be different and have them everywhere. Of course, it's contagious so we'll see what happens to the rest of the family. I was healthy until I had children, but they're worth it! Thankfully it won't last long so we'll be able to enjoy Thanksgiving with our families.
Here's an update on Micah, the little boy I mentioned a few days ago. He started chemo and it has made him very fussy and sick. He'll receive treatments for 3 days and then they'll just watch him closely until his counts go back up. Please continue to keep them in your prayers.
Tricia

Happy Birthday Peyton!

Happy Birthday Miss Peyton!
Bailey is still doing very well. It does look like her g-tube is infected once again. She's appointment free until next week. She'll see her pediatrician next week, cardiologist the following week, and I believe GI 1-2 weeks after that. Aubrey is also doing very well. Her staph infection has cleared up. We're looking forward to the holiday season and look forward to spending time with our families.
I'm going to ask for some prayers for another family. They belong to a support group we go to in St. Petersburg. Their son, Micah, has been through everything Bailey has, and yesterday he was diagnosed with Leukemia. He's only 17 months old and has been through so much already in his little life. Thank you all for keeping this family in your thoughts and prayers, also they have a little bundle of joy due very soon.
Trish

We're Going to Elmo!

Bailey had her appointment with the pediatrician today. Everything is going well. She received her immunizations today. Grandma and papa took her because I was working, so I missed the tears! Whew! Her doctor wants to continue the breathing treatments for 2 more weeks. He'll check her again at that time, plus she'll be seeing her cardiologist and gi doc around the same time.
Aubrey is doing well. She has another staph infection, so she's on antibiotics until it clears up. We're taking her to see Elmo tomorrow. This will be her second time seeing him and I hope she enjoys this show just as much as she did the last. She amazes me every day. She has so much to say and she's so descriptive. She sees "beautiful lizards", "pretty flowers", and the "big moon". She also enjoys being a little princess and loves her little sister. Sometimes I think she's more excited to see Bailey than anyone else... well anyone except papa. I hope everyone has a great weekend and I'll update when there's more.
Tricia

Thank You Janice!

I love the new cardiologist! We made an excellent decision, and thank you so much Janice for the recommendation. He's excellent! He said she looks great, and that he does hear a slight murmur, but that's to be expected. The echo showed mitral valve regurgitation, but all is okay. He'll just continue to follow her, and hopefully she'll be surgery free for the rest of her life. She is also feeling better, but has been a bit fussy this weekend. I spent today shopping with the girls, and we had such a good time. Well... I did! We have an appointment with the pediatrician Friday so this will probably be my last update until then. Hope everyone else is doing well.
Trish

Bailey's Looking Good and Fall Festival

Bailey had an appointment with the pediatrician and great news... her lungs are clear! She's also lost a little weight, but it's probably because she's been a bit sick. As you can see in her recent pictures, she's a cute little chunk so I think she'll be okay!
This will be my final Buddy Walk update, until next year. Over $100,000 was raised for the Down Syndrome Association of Central Florida from the family teams and corporate sponsors have committed to over $40,000! That's excellent! There were over 100 family teams and 4,000 participates. It was such a fun and inspiring event. Hopefully some of you can join us on Bailey's Team next year.
Tonight we have a Fall Festival at Bailey's "school" and on Thursday we have an appointment with her new cardiologist, so I'll update more then.

We're Home!

We're home. Quick update because the laptop has 10 minutes left on the battery. The hospital doc said she was in respiratory distress and that's the reason for the admission. She seems to be doing slightly better, but she's still having a difficult time breathing. We're doing breathing treatments and we'll follow up with her pediatrician this week and in addition to that appointment we'll be seeing her new cardiologist this week. Everyone is sleeping right now. Aubrey still isn't feeling well, Keith is starting to get a cold, and I decided hanging out in the ER would be a great way to spend my Saturday, not that Bailey's hospital room wasn't fun enough. But, I too should start getting better soon. They gave me some meds and rehydrated me and I was back with Bailey in her room before the night was over. Well the battery is almost dead, and I need some rest... back to work tomorrow. I hope everyone stays healthy.
Trish

Back in the Hospital

I'm home for just a few minutes and I thought I would update on our family. First, Bailey has a respiratory infection and was admitted to the hospital this afternoon. She's at Lakeland Regional, so at least she is close to home this time. She'll probably be in for the weekend, and hopefully no longer. I'm home now packing bags and Keith is with her. Keith will be spending some time at home this weekend with Aubrey and I'll take hospital duty. Aubrey is also sick. I guess I infected my family. Hopefully Keith will stay healthy. I'll update more when I know more.

She's Doing Great... but I'm Sick

Just a quick update on Bailey. She is still doing very well. She had an appointment yesterday with her pediatrician and she hasn't gained much weight over the past 2 1/2 weeks so he increased her flow of formula (she still has a feeding tube). She'll see him again on Friday. He'll check then to see if she's tolerating the increase. We see our new cardiologist next week. I'm so happy we were able to get an appointment with him. I've heard great things about him, but honestly I think anyone would be better than what we had.
I'm a little under the weather and I'm trying so hard to keep Bailey and Aubrey from getting sick. I'm home a few hours early from work today and I'm hoping the extra rest will help.
Oh, and the Buddy Walk was great! We had so much fun. Grandma and papa were there, and of course me, Aubrey, Keith and Bailey. Aubrey had so much fun. Characters from Universal were there, so she got to see her favorite, Curious George. I'll update pictures soon. Thanks again to all that donated to this wonderful organization.

It's Buddy Walk Time!

Bailey is still doing very well. She spent the afternoon taking a little road trip with her mommy and Aubrey spent the afternoon at the zoo with her daddy.
I want to thank everyone that has donated to Bailey's Buddy Walk page. Tomorrow is the big day and we've raised over $800.00 for the Down Syndrome Association of Central Florida. That's amazing! It's much more than I ever expected. This group has helped us so much. It provides support families need and has helped us learn what we can do for Bailey to help her live a happy and healthy life.
Once again, thank you so much everyone for the donation. We're walking tomorrow in Orlando, and I'm excited to say Bailey will be joining us! If I had been asked a month ago if she'd be at the walk I would have been unsure, but she's made an amazing recovery and we can't wait to show off our beautiful little girl. For those that haven't seen her Buddy Walk page, here's the link. http://www.firstgiving.com/LittleBailey
Thanks again! I really appreciate all the support we've had over the past 5 months.
Tricia

ER Time Again

Well it's been a few days since updates and things were going very well. However, last night we had to take a little trip to the ER. Bailey's incision is infected and it seemed to be getting worse. She's on antibiotics because of her g tube infection and they decided to have her continue taking those and return if her temperature increases. I really thought our hospital visits were over for a while. It's bad when the ER docs recognize you. Hopefully we'll have an uneventful weekend, and she'll improve each day.
Oh, and Kelli... I hope you got a call last night that all was okay. I was half asleep when we got out and I forgot to call you. Love you!

Quick Little Update

Bailey is still doing very well and she's still off oxygen. We haven't had any doctor visits this week, but we're still having some tummy problems. We're doing the Buddy Walk next Saturday, and I look forward to seeing friends and getting Bailey out of the house for a while.

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.

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.

3 Weeks

It's Monday May 28, 2007 and our second daughter, Bailey, is 3 weeks old. This has probably been the longest 3 weeks of my life. My husband and I arrived at the hospital on May 7th for our scheduled cesarean. I arrived to an empty room after recovery. My husband, our parents, and our other daughter were in the cafeteria eating and Bailey was in the nursery. About five minutes after arriving in the room our pediatrician came in and informed me that several doctors and nurses feel our daughter may have Down syndrome. I, of course, didn't feel this was true because I had the triple screen and ultrasounds. My obstetrician said they were normal. So how could this be true? The pediatrician told me he did blood work and we'd get the results in a few days. Soon after I was able to hold my beautiful little girl and start the bonding process, which was very easy. On May 8th the pediatrician once again returned to my room. He said that he hears a murmur and that he would like to do an echo cardiogram. He said if Bailey has a heart defect they would send a cardiologist in to talk to us. A few hours later the cardiologist arrived in the room and said Bailey has AV Canal defect. My heart dropped. Once again I am alone in the room and getting results that will change my life forever. On May 10th my daughter and I were released from the hospital. Finally I could go home to my husband and our other daughter Aubrey. It was nice to be together as a family. Bailey was eating well, but still wasn't eating as much as Aubrey did when she was first born. We has an appointment on the 11th with our pediatrician. He was concerned with Bailey's respiratory rate and sent her for a chest x-ray. Thankfully things were changing for the better because her chest x-ray was normal. I finally felt we were going to stop getting bad news. On the 14th we had a follow-up appointment and her respiratory rate was much better, her color was better, and overall she looked good. We still had an issue with feeding, but the doctor increased the amount of calories per ounce and asked that we come back in a few days. On the 17th we returned to the doctor and Bailey was finally eating 15 oz of formula per day and she had gained 3 ounces. It was time to celebrate! He said we could wait 2 weeks before we had to come back. Finally, I can start my Down syndrome research and contact the early start program to get information on therapies. The following day Bailey had her 11:00pm feeding and went to sleep. We would wake her every 3 hours, but she refused to eat. The following morning we called the pediatrician and never received a return call. Finally, at noon, we decided to go to the ER. We took Aubrey to her grandparents house and arrived at the ER soon after. When we arrived they took Bailey back immediately. Within minutes she was surrounded by doctors and nurses. We were terrified. Was she even going to survive? All we could get from the doctor was that Bailey was very sick, but what was wrong? We were told earlier in the week about congestive heart failure, but this isn't what they described. Finally, we were told it was congestive heart failure. I guess I now know what to look for. Once stabilized, Bailey was flown to the children's hospital in Tampa. The doctors at the children's hospital said they would treat her with medication, and hopefully she'll be sent home in a few days. Bailey didn't recover as quickly as they hoped so on the 24th of May the doctors did a catheterization. It was then that they realized she also had another problem with her heart so the following day they did a PDA ligation. She has since been on a ventilator. We're not sure what will happen now, but we're hoping she will soon be removed from the ventilator, eating well, and going home.

Still Needing Assistance

Another chest x-ray again and things are still looking the same. Maybe we'll be home in another week. They still have her on the ventilator, but the plan is to get her off it tomorrow.

I Miss...

They did another chest x-ray today and things are still looking okay. It's hard to believe we've been here for a week already. We're here day and night and it's beginning to take it's toll. The staff here is amazing, but I still miss being at home, and I miss Aubrey terribly! My parents are keeping her and they bring her to visit, but it's so hard to see her leave. I can't wait to get home and be a family again.

Surgery is Complete

Bailey's surgery went well. The surgeon she had today will be the same surgeon that will do her open heart in a few months. They did another chest x-ray and ekg on her today and everything is looking okay. She is still on the ventilator, but hopefully she'll be off within a few days.

Surgery Tomorrow

Well they did the catheterization today and everything went well. It seems that Bailey has a PDA. This is information I received from the National Heart Lung and Blood institute.
Before birth, the two major arteries—the aorta and the pulmonary artery—are normally connected by a blood vessel called the ductus arteriosus, which is an essential part of the fetal circulation. After birth, the vessel is supposed to close within a few days as part of the normal changes occurring in the baby's circulation. In some babies, however, the ductus arteriosus remains open (patent). This opening allows blood to flow directly from the aorta into the pulmonary artery, which can put a strain on the heart and increase the blood pressure in the lung arteries.
So my shortened version, Bailey will have surgery tomorrow to correct this defect.
We were told that after the catheterization she would be removed from the ventilator, but when we arrived in the room she was still on it. That was a scary moment for me. I understand why she needs to be on it, but it's difficult to see 17 day old baby on one.

Catheterization Tomorrow

Well she still isn't improving. One of the cardiologists at the hospital said they have decided to do a catheterization tomorrow. I've known adults that have had them, but I'm not sure how the procedure is handled with infants. We're told they will sedate her, put her on a ventilator, and do the procedure. They will not do any corrections however. If something needs to be done they will schedule it another day.

No Changes

They did another echo today and it still hasn't shown much improvement. If she doesn't improve soon they plan to do a catheterization on her. They said that she may have some additional problems other than the AV canal defect. Hopefully she improves quickly. I don't know how much more her little body can handle.

Test, Tests, and More Tests

They did another echo, chest x-ray, and more labs today. They get started early here. It seems like when you finally fall asleep someone is coming in the room. We're not able to close the door so all night we heard monitors beeping, nurses talking, and people walking by. We're still not sure what is going on with Bailey, but hopefully she'll show some improvement soon.

Nightmare

Such a horrible day. I never imagined when Bailey wasn't eating last night that things would end up like this. We were up most of the night trying to get Bailey to eat. Keith and I would take turns, but nothing seemed to work. She just wasn't interested. We decided this morning to call the pediatrician, but we never received a return call. Finally, around noon we decided to take Bailey to the ER. Thinking it was something simple, like a bug, we took our time and took Aubrey to my parents. When we arrived at the ER they got her back pretty quick. We went to exam room 1 and soon after the doctor looked at her she was sent to the procedure room. We still had no clue what was going on. Keith and I stood in the hall and looked in the room as the hospital staff surrounded her little body. The doctor came out several times to tell us how sick Bailey is, but I didn't understand why. I also didn't want to ask questions because I wanted him to spend as much time with her and less time with us. The did several labs, an echo, an ekg, spinal tap, chest x-ray, and they put her on oxygen. They called her cardiologist to come see her and thankfully they didn't wait on him to start treating her. It seemed like it took him forever to get there. We were told that she went into heart failure and they wanted to air lift her to St. Joe's in Tampa. They got her stable and placed her in the helicopter. I make the drive to Tampa daily for work, but this trip seemed to take forever. When Bailey arrived at St. Joe's we received a call from the PICU nurse saying she arrived there and is doing well. We finally arrived and our little girl was getting several meds via IV and she was still on oxygen and hooked up to several monitors. We're allowed to spend the night here with her, so we plan to do that. Keith and I will split time between the recliner and glider, but I doubt either of us will get much sleep.
One last note, the ER staff at Lakeland Regional did an amazing job with her. We were very fortunate to have this staff care for Bailey. They seemed to do everything right.

She Isn't Eating

Bailey hasn't been eating well tonight. She stopped taking a bottle earlier this evening and hasn't seem interested since. She still looks good so I'm not sure what's going on.

Trisomy 21

Today was another appointment with the pediatrician. At the time of the appointment there weren't results from the blood work. The appointment went well and she was still gaining weight. She's doing great with her bottle. After we got home the doctor called. I've never received a call from the doctor, it's always been a nurse or someone else in the office. I should have know it couldn't be good. He said that Bailey's results came back positive from Trisomy 21, so I guess our little girl has a little something extra. It, of course, was a tearful moment for me. I think I was still in denial, thankfully Keith had accepted it so he was so much help.

One Week Old

We saw the pediatrician again today and everything is going well. Still no results on the blood work, but she's gaining weight! That's what we want.

She's Just so Beautiful

We saw the pediatrician today and the blood work still isn't in. I just don't see some of the things the doctors are showing us. Her eyes look normal, she does have a small gap between her toes, but some kids have that, right? Her ears are little, but she's a newborn. I guess we'll just have to continue to wait. Her pediatrician wants to continue watching her closely until her surgery. The plan is to see him every week or two. She needs to continue to gain weight, and get a little older so she can have a successful surgery. They did a chest x-ray today and it looked normal. Hopefully everything will be smooth sailing until surgery.

We're Home!

We get to go home today! Finally, we can take our baby girl home and be a family. This will be interesting... a newborn and a two year old. I think we were crazy thinking we could do this! Bailey is just so beautiful and looks a lot like Aubrey when she was born. We still don't have results from the blood work, but hopefully we'll have it before the week is over.

Why?

Today the cardiologist came in and said they heard a murmur and did an echo on Bailey. The echo shows that she has complete AV canal defect. This means that she'll have surgery when she is about 4 months old. We're not sure what all this means. I do know that children with Down syndrome often have this heart defect, so it is more likely that the blood tests will show that Bailey has Down syndrome.