CHD AWARENESS WEEK NEWS

This is my second year to help spread awareness for Congenital Heart Defect Awareness Week (February 7-14, 2010). I wish I had been more aware of CHD before, but as many of you... I had never heard of it until it was placed in our lives.

I will be posting several different interesting post this week in hopes to help spread awareness for CHD. I will be posting more about Bentley's story, pictures from surgery I have never posted before, a fun post that you can be apart of to also help spread awareness, a giveaway, and a few videos.

I posted this video last year, but I want to again. It is by far one of my favorites. The information on it, the song, everything!!! I have searched for new ones but I continue to go back to this one every time. I cannot even tell you how many times I have watched and bawled through this video during the past year.

*** Above I mention a post that you can be apart of to help spread CHD awareness. I will be doing this tomorrow morning so be on the look out. It will be very simple and fun yet informative for many people. I will be adding Mr. Linky to tomorrow's post so my other readers can see what you guys have to say and get to know you better. This will be for everyone, not just heart families.

CONNECT WITH HEART FRIENDS

I started my blog when Bentley was 5 months old. I thought it would be easier to keep family and friends updated on her heart and surgery. At that time, I had a very hard time verbally talking about her heart (love talking about it now, I probably drive people nuts!), so I found it easier to write and everyone could stay updated at the same time. When Bentley was a day old we were informed she had Tetralogy of Fallot (read the beginning of her story here), this was a shock to us. I had a hard time as any parent does. Once I started my blog, I was overwhelmed with the outreach of my fellow Christian bloggers.. that I did not know existed at the time. They lifted me each and every day and helped me in so many ways. I am so blessed to have each and everyone of them in my life during that time (and now), and even all my new readers now. For the first few months I searched the internet day and night in hopes to find similar situations. I have learned that all heart babies are completely different, but it did help me to read other real life stories. It gave me an idea of what to expect, as well as gave me hope for a brighter future for my child. Words can't describe how scary it is to find out your child has a heart condition.. you feel alone, scared, sad, mad, clueless, blessed (it could be worse), guilty (wondering if it was my fault, what I did wrong), and even out of reach... our job as parents are to protect our children and when you are going through something like this.. it is out of our hands, we have no control.. we have to hand it over to God and let Him do the protecting. There are many support groups out the for parents going through this, but where I live there are none. So I turned to the internet and searched. I have connected with so many heart parents, and I cannot tell you how grateful I am for that. I have a special connection with each one, knowing just a bit of what they go through. I ask them questions, they ask me questions, I have vented to them, and they have vented to me. We have become great friends and it is nice to "know" these other parents so we do not feel so alone. So for this reason, I have decided to set this page up of heart friends. Each of the children below have a CHD, you can click their picture to be directed to their blogs so you can read more about their experience and how they are doing now. Don't be shy, comment, email... it's great to connect and support! And if anything else, these children/adults could always use a special prayer. They are such strong fighters and go through so much in their lives. CHD is a life long journey...

Maddie-

Hypoplastic Right Heart, Pulmonary Atresia w/IVS, Ebstein's Anomaly

Blog

Carla-

HLHS

Blog

Derrick-

single ventricle, Dextrocardia, Mitral Atresia, Transposition of the Great Arteries, and Pulmonary Stenosis

Blog

Maccoy

Tetralogy of Fallot

Blog

Madison-

Tetralogy of Fallot

Blog

Alex

born in 1991 with Single Ventricle, Pulmonary Stenosis, and Transposition of Great Vessels

She is now a freshman in college at Millikin University.

Dylan

Tetralogy of Fallot

Blog

Erin (Age: 25)

Atrial Septal Defect

Blog

Zach

Single Ventricle (Double Inlet Left Ventricle), TGA, and Pulmonary Stenosis

Blog

If there is someone you would like to add, please email me at crystal525@live.com

HEART BABIES AND Q&A - UPDATED

* UPDATE - I am referring to anyone and everyone that has a CHD.. it does not have to be a baby or child. I would love to hear from and add adults as well!!! Please share this post with your heart mom friends.

I am working on a couple of changes for my blog. I currently have a "heart friends" area on the right sidebar. This list can go on and on.. I have really slacked with my blog lately and since I have been blogging more the past few days it reminds me of how much I miss it. So, I am updating a few different things. First, I will be updating my heart friends list.. but, because there really are so many that list could go on forever. So I have decided I will be adding a link over there that says heart friends, once you click there you will then see several heart babies. On this page, I would like to have a picture of the baby or child as well. And possibly what their heart condition is called. I think this will be a great way for heart moms to connect to other heart moms. I cannot tell you how many times before surgery that I have searched day and night for other heart moms.. just wanting to ask them questions and pray for their sweet children as well (and still do). Because not everyone has a prayer button, I am asking for a picture of your child, their name, and their heart condition. If you are a heart mom, you can email me at crystal525@live.com with those 3 things and I will get them added. If you are not a heart mom, but know one and would like to have them placed on this page.. please get with the heart mom you know and have them contact me. I rather not post pictures unless the mom or dad contacts me with their approval. I will update you all once I have this set up. Until then, feel free to start sending me this info!!!

I am working on a couple of other things and I will post updates on these as I get there.

Also, I have received so many questions since I have had my blog. I have never posted a question and answer post so I have decided, I will do just that. If you have any questions.. about anything at all (does not have to be heart related, or it can) email me at crystal525@live.com or leave a comment with your question. The most common question I get is, "How did you and your husband come up with Bentley's name" Good one, because it is so unique.. and I will tell you right now, definitely not because of the car. That car is not even in our vocabulary. Yes, they are nice.. but not something we would ever be able to afford.. therefore it does not even exist to us. I will answer that question in the Q&A post. I will wait probably a week or so before I do this so I can be sure to get all of your questions. Ask away!!!

HEART MOMMIES & DADDIES

I have always received many emails from other moms that are going through what I am and have with Bentley.. and dad's too! But more so now than ever.. many of them have just found out such heartbreaking news and are turning to the Internet for research, just as I did.. for hours and hours at a time.. and through the wee hours of the night. These mom's are coming across my blog in the search engine while searching site after site looking for success stories and just a little something that will give them hope, and for so many more reasons.. again just like I did. Many of these moms do not have blogs so they will leave a comment but there is no way I can reply back because I have no return blog or no email address. I really want to reach out to these moms, it is one thing that helped give me hope when I was searching. Also, many of these mom's are not familiar with blogger and the post of mine that usually pops up when they are searching is one of my first few post ever talking about the whole story of how we found out and how torn we were, and they all relate to the way I felt and they tell me it's as if they were looking into a mirror. BUT there are a lot of people not familiar with the way a blog works, so these sweet moms & dads are not aware that Bentley has already had her surgery and she is doing amazing. I want these people to know this because it is "one" thing I continuously searched for. I also want them to know it is okay to email me and ask questions. No heart child is alike, but it sure is nice to have support. I had so many questions and talked to several different "heart moms" in the past and STILL do. So I have decided to add a navigation bar to my blog.. that way they can search around right off and do not have to mess with the archives.

If you have not read my first few post, I can tell you right now.. I had a really hard time with the fact that Bentley had a heart condition and was going to have open heart surgery. I kept it inside for months, we never told anyone.. I did not even tell my own sisters because I literally could not "speak" the words. I did not want to believe what we were going through. Which is crazy because I am so open about it now. Very proud of Bentley!! I could go on and on, but.. one night while I was listening to a Christian radio station, they started talking about "sick" children. And I learned that sometimes when things like this happen, it is because God wants us to reach out and help others. I have always been confused by that until after Bentley's surgery. I see it now.. and I do want to help and be there for others. I am so proud of Bentley, she is one amazingly strong little girl that absolutely melts my heart. God has blessed us in so many ways.. with Bryson, then Brenna, and then Bentley performing miracles one after another. He has really shown us and many others how powerful and amazing He is through our journey.

If you are a heart mom that has been reading, commented in the past, are new here, have questions, anything.. I am here! Just click the button up top to email. Also, I am still working on the navigation it is not all up and running yet but will be in the next few days. If there is something you feel I am leaving out, shoot me an email and I will see about adding it.

DOCTOR UPDATE

Isn't this shirt and bow adorable!! The shirt says "bentley" in zebra.. =) Our great blog friend Kristin (who came to visit us in the hospital just minutes before we were discharged :( so we didn't get to see her), she sent this, she has a great business and offers the cutest things!! Oh and even the packaging was adorable. Thank you Kristin we absolutely love it!!!

If you read a bit about Bentley yesterday, you will know that we had to make an unexpected trip to the Drs. office yesterday.. we were given no definite news, but also a little unexpected possible scary news. There is a spot on Bentley's incision that appears to be infected... so we called and were told to come in right away... Bentley's pediatrician was on vacation so she was seen by another pediatrician in the office. He seems to think it is either irritated or infected so he called in an antibiotic creme and he wants to follow up in a few days so he can see it and compare. We are praying that this creme will help. Now the scary part.. he repeatedly stressed that we must watch this extrememly close.. if there is any sign at all that this is getting worse and not better.. we have to go back to the dr. office right away... he said it could very well be MRSA (aka staph) that it is going around right now. Which is very scary to us... it can be fatal. So we can only hope and pray that this is not MRSA and the creme will help remove any infection that may be there. I guess, at the moment we can look on the bright side that he was not alarmed enough about this to take further action, it's just scary. This is also a little frustrating because we have taken such good care of the incision, because of Bentley's age.. she is contsantly drooling so since day 1 we have been taking all steps to keep the incision perfect and well protected.

Oh, and the girl IS gaining weight. She has gained 1 pound in just almost but not quite 3 weeks.. this is a lot for her. =)

Remember Shannon, she won a engraved tile from Engraved Uniques. Here is the one she picked out.. isn't great! I just love them. By the way, Kaye has Bentley's tile up on her site and it can be purchased at the link above.

GOD'S SPECIAL LITTLE HEARTS

So, I received the confirmation email this afternoon. I have been approached by Katie with http://www.godsspecialhearts.org/ in regards to designing their website. She and a few others started this organization in 2006 to help families affected by CHD (congenital heart defect). As you know this hits close to home and is super close to my heart considering Bentley had her open heart surgery exactly 4 weeks ago. I was ecstatic when I read this email. There is not much locally that I can do to help others with CHD, there are no support groups, no organizations.. absolutely nothing within an hour away. There are so many of you that have helped us during our time of need with Bentley's journey (that we are so grateful for, I could not have made it without support), so I am thrilled that I now have this one opportunity to give back and help others. I do realize that this will not directly help ones with CHD, but it will help this organization that does so much for these families. I am happy about that, and I do plan on doing more in the future, but this is a start. Sorry to keep you in the dark, I just didn't want to say anything until they confirmed it. I know this probably doesn't seem very big to some.. but it is to me.. it is HUGE!!!

If you get a minute, take a look at their website and check out all that they do.. it will look different soon!!!

I will let you know when their new site goes live with the new look...

WHO WOULD HAVE EVER THOUGHT

This stuff look familiar? Too familiar to us! Who would have ever thought that after Bentley's heart surgery we would get to go back to Similac Advance. Ahhh, we are loving it!! For those of you that are familar with this knows just how expensive it is...

Bentley had excessive crying and spit up with ALL formula except for this one. With Similac Alimentum, she was a happy baby with a little spit up.. well after her heart surgery (a little over 3 weeks ago) we noticed that she never once spit up.. when she normally does just a little. So a few days ago we thought we would try Similac Advance again... and who would have ever thought that her heart would have been connected to this excessive crying/spitting up/formula issue. Bentley is now back on Similac Advance and doing perfectly!!! YAY!!!

Now for those of you that have to use this formula like we did.. know just how expensive this stuff cost. Bentley would only take the ready to feed which is even more. But I do want to let you know that some health insurances cover a portion of the cost. Ours refused, we even fought it because of Bentley's heart condition.. she did medically need this.. her pediatrician even fought the denial.. but they still refused. So we gave up. But if you have to use Alimentum, I would defintely give your health insurance a call, it would be worth a try!!

QUICK ONE AND WINNER

Sorry I did not post yesterday, a sick baby sure keeps you busy... day and night. So this will be a quick one. Bentley is still sick, but the good news is that there is still no fever. I was given the okay, and I have started giving her a little medicine to hopeful speed this yucky stuff up. Aside from that.. still recovering beautifully from her heart surgery. What can I say.. I much rather deal with a cold over the million things that could have gone wrong during surgery or recovery. What a blessing!

Lastnight we had fun at Bryson's game.. they won, but it was bittersweet. We played against one of his friends he has played soccer with since they were 4. We play again tonight. Brenna is already asking when the next tball season is, ha. We have a while but her next thing up is soccer in fall and she absolutely loves it! So that is something exciting to look forward to. Oh and that she will be starting kindergarten.. well that is something for her to look forward to.. she is super excited and I am super depressed.. ha!! No, I know she is so ready.. I will probably have a crying fit like I did with Bryson, but she is ready..

Now.. to the winner of one of Bentley's engraved tile.. Shannon with Sunshine and Open Hearts please email me at welshcrbb@hotmail.com with your email and I will send your contact information to Kaye with Engraved Euniques so you can receive your new tile!!! These are so awesome.. I always loved them, since I first came across them.. but to see one in person.. my goodness!! They are very nice, very!!!!

I hope to post again tonight.. with pictures. Maybe more catch up photos from Houston. Bentley's scar is looking better by the day. I still need to take pictures to post but hopefully will have this up early next week. Oh and her dancing.. she does it all the time now, just a matter of catching it on video. It is darling!!

Oh, and please add baby Lindsay to your prayers. She received a new heart a couple of days ago. What a miracle baby she is!!!

SICKLY

Today has been a long day.. it is the first "summer" day for our family. Bryson's last day of school was yesterday... but it hasn't been the most exciting. Bentley's cough and runny nose is not getting any better, in fact.. it has gotten worse.. a lot worse. It has even caused her to vomit a couple of times today.. poor baby. If it is not better by tomorrow we just might be making another trip to her Dr. office. It's not very often we see such a sad droopy face from Bentley... not that we ever want to feel sickly but we really don't while recovering from OHS (open heart surgery).

Bentley's appointment went well yesterday. It was pretty much to just let her pediatrician know how everything went and let her look at Bentley in case anything comes up she can compare to this appointment. As far as Bentley being "sick", pediatrician says.. lungs sound good, no fever, ears look beautiful, throat looks beautiful so she wants us to try to wait this out. See, since Bentley is still in recovery.. congestion meds will still be hard on her heart. But we of course have to watch this closely to make sure it does not turn into RSV or anything else. That could be critical. Good news is that Bentley still has no fever.. but the girl is miserable. She hurts and I hurt seeing her hurt. As far as the rest of the appointment.. amazing. Eveything looked good.. her pediatrician was in shock with how well everything went.. she said Bentley is defintely a MIRACLE baby. I do believe all babies are miracles, but we have seen God perform several on Bentley. We are so blessed!

There is not much else going on.. because Bentley is sick.. there is really not much we can do. Bryson's first city tourney game is tomorrow (Friday) so we are excited about that. Bentley will have to miss out.. either my mom or mother in law will be watching her at home while the rest of us go watch Bryson.

Oh and today the last piece of tape fell off Bentley's incision.. Not sure if I ever talked about it.. but there were little pieces of tape going down the incision.. we were suppose to leave them there until they fell off on their own. It looks good so far.. a little pink but it should take a few weeks before all that will be gone. I will post pictures of it soon.

Please add Abby Grace to your prayer list, she is being treated at the same hospital Bentley had heart surgery at just 2 weeks ago. I talked to her mom earlier tonight, and I can see that she needs to be lifted in prayer. I have been there I cannot tell you how many times.. just to know people were praying and still are.. have helped and still does in so many ways!

Please also add Dylon to your prayer list. He had open heart surgery today at the same hospital Bentley did. He did amazing!! Reading about his surgery brought back so many tears from what we went through just 2 weeks ago. Please pray for a quick and smooth recovery.

More catch up post coming soon.. and if you haven't entered the free give-a-way for a Bentley engraved tile, hurry and do so now.. I will be annoucing the winner tomorrow night.. so as long as it allows you to leave a comment you are welcome to enter. I will turn the comments off before I draw and announce. Click here to read more about it and enter! You do not have to have a blog to enter.. anyone can! I received Bentley's tile in the mail earlier this week and I absolutely LOVE it!! I will defintely be getting one for Bryson and Brenna. It looks amazing and makes the perfect keep sake for any occasion!!!

CATCH UP POST 2

Bentley woke up this morning not only coughing but now runny nose. We made it to our Dr. appointment today and it went well, really well actually. I will post about it next post so I do not ramble too much in this one. We are hoping this cough and runny nose clears on it's own.. we do not want to give her medicine that will work her too hard yet.. details coming!

A very dear blog friend Kristin and her family were so thoughtful and generous to give our family tickets to the Houston Astros baseball game while we were in town for Bentley's surgery, so the kids would have something to do other than hang out around the hospital the whole time. My parents took Bryson and Brenna while Ryan and I stayed by Bentley's side. The kids had a blast! So much fun.. I heard about it for days!!! Here are a few pictures my parents took while at the game.

Not sure exactly where this was taken...

Bryson, Nana, and Brenna at the game.

The wonderful view from their seats..

Brenna eatting her popcorn up...

Brenna upset because she had to share her popcorn with Bryson.

Brenna and Nana...

Bryson being silly...

Their ride to the game..

Bryson, Papa, and Brenna

Thank you so much Kristin. I cannot even tell you how much we appreciate you and your family doing this for us. In school Bryson has to keep a daily journal... so I had him continue it while we were in Houston.. and he managed to mention the Astros game every day... like I said before he LOVES his sports!

CATCH UP POST 1

First, I need to ask for tiny prayers.. Bentley woke up this morning with a horrible nasty cough. It's so sad.. I have never heard her sound this way. This is a huge shocker and came out of no where. Since Bentley has been born she has yet to be sick.. nothing at all. Praise God! This is the last thing that needs to happen while she recovers.. she is recovering well.. I really don't think it could go any better. But, she is still recovering from a huge surgery. She cannot get sick yet, her body must heal from all it has been through before it can take this. So please pray that this cough goes away. We have an appointment with her pediatrician today for a check up and now to look more into this cough.

Catch up time... here are several pictures from the day before Bentley's surgery. This is the day that we arrived to the hospital for lots of testing and then being admitted.

A little break in between test.. and so tired of test.

Mommy.. Daddy.. & Bentley.. loving!

Checking things out...

Little bitty legs.. and our favorite zebra from Grandma Armer in Kansas. (Thank you Grandma Armer!)

Yes, we can stand up even with an IV in our foot and an overload of tape, card board, and lots of plastic stuff.

Sticking her tounge out at Brittany. So glad they made it to visit.

Poor baby.. had no clue what all she was about to go through.

Will catch up on more later!!!

If you haven't read about the give-a-way, be sure to click here to do so now.. it is so cute!

MIRACLE & GIVEAWAY

Such a big miracle in such a little girl... yes she is!!! Bentley has been doing great. We are so proud of this little girl and we praise God daily for such a successful surgery and smooth recovery. She has been so happy.. lots of smiling and laughing going on in this house. If you didn't know all she has been through.. you would never be able to tell she is recovering from open heart surgery. Bentley also has a couple more "first"... she has started dancing and waving. Who knew just a week and half after surgery she would be doing new things. Her dance is darling... she shakes her head back and forth to music.. I have a small clip on my cell phone, but I will work on getting you a better video to post here. She has been waving.. well kinda.. it's more of a side ways wave. ha. But it's a wave, and a very cute one at that! She has an appointment with her pediatrician on Wednesday.. just a check up. Cardiologist would like her to be seen, so her pedi has an idea of what she looks like right now while recovering in case anything comes up, she will be able to refer back to how she is doing now to compare.

Brenna had her last tball game Sat., Bryson's team won 1st place so they will be going to the city tourney.. how exciting! He loves the game and this is the first year he is old enough to advance. So much fun!! Also, we just signed him up for track.. crazy I know. He first started track last year and he loves it. I'm telling you, this boy LOVES sports, all sports. We are not those parents that pressures their child.. he loves it, so we are more than happy to support it. I have never heard of such small children running track until last year when we were introduced to it. It is pretty much the real deal.. he wins ribbons, medals, and all! These small kids even do high jump and long jump.. Bryson passes on those.. he likes the running (sprints). I will update and tell you more about this later.

GIVE-A-WAY

I have recently been contacted by Kaye, owner of Engraved Euniques. She wanted to offer a Bentley tile to make and offer to her customers in hopes to help Bentley, she is even going to give one away (more about this below)! Below is the finished tile.. it's just beautiful!! We love it!! Bentley's tile is now available and ready for purchase.. Kaye is so kind to donate 10% monthly of all sales from Bentley's tile to Bentley's medical fund! Isn't that awesome. We are blown away by people stepping up and going out of their way to contact us in hopes to help Bentley. If you decide to purchase a Bentley tile, it will look just as the picture does below, only it will contain your child's birth information. Have I mentioned how amazing this quote is? I couldn't describe Bentley any better myself!

Now about the give-a-way... one person will receive one Bentley tile personalized with your child's birth information. To enter.. all you have to do is go to her website Engraved Euniques and pick out your favorite tile.. then come back here.. leave a comment and let me know which is your favorite tile. It can be any one from her site. That's it.. once you have left your comment you will be entered in the give-a-way. I will announce the winner on Friday... so you have until Thursday night to enter.

WE'RE HOME

Finally we are "one big happy family" together again, as Brenna would say.

Bentley was very upset about her follow up appointment today. She had other things she much rather be doing.. but she had to go. I forgot my camera so I took a few not so great quality photos from my phone. Here is the one where she is letting us all know exactly what she thought about being back at the hospital.

Now here are a few photos just before her follow up. And of course wearing one of her beautiful Bentley Bows by my dear friend Noelle with Glam R Baby! Many more pictures of her wearing the others coming soon!!

Now about the appointment..

Cardiologist says Bentley is doing well. Praise God!! Everything looked as it should a week and half after surgery. She goes back at the beginning of July for her next appointment.. and and shortly after working our way up to yearly visits. Then he informed us at about the age of 15 they will start watching her pulmonary valve closely to see if it needs to be replaced. I was a little heart broken by this because the surgeon said she will probably be about 50 before another surgery... BUT I can't complain... after all it is a good thing they will be watching closely. It is routine with TOF babies... it is not a for sure thing that she will even need surgery again, just as it is not a for sure thing that she will never need surgery again. So whether it is 15 years, 30 years, 50 years, or never... I know He will be with us.

And Bentley does too!

I have so much more to post about, but I need to end this one here.. Also there will be a giveaway soon.. hopefully the beginning of the week.

I forgot to mention that Bentley is home bound for 6 weeks after surgery, so we have about 5 weeks left. Only other major intructions.. we cannot pick her up under her arms, or hold her by her arms. She is able to crawl and pull up as she wishes.. which is a huge relief because the girl started doing this in the hospital and we couldn't stop her then so I know we can't stop her now!

APPOINTMENTS, PICTURES, & OLD POST

Our follow up appointment is today at 1:30. We will see Bentley's cardiologist and then surgeon.. please keep her in your prayers. We are praying that Bentley is recovering well and praying that the echo (heart ultrasound) show great results. If all goes well, we will be back on our way home shortly after.

So I have had a couple of emails informing me my "discharged" post is not working.. some are able to open it, just not see anything.. so I am posting it again in case you missed it.. you can read it below. What a special day it was for our family!!! I have a lot more pictures to post but my camera's battery is dead, and to be honest I haven't a clue where the charger is at. So count on one LONG post of pictures from this past couple of weeks coming soon (once we get home). As for any updates.. Bentley's raffle drawing was tonight and it was a HUGE succes. I haven't seen any pictures yet, but once I get them I will post all about it.. we wish we could have been there but we are so grateful for all of our family and friends that took time out to be there to support Bentley even when we couldn't. More on that later. So what's miss Bentley up to.. well the girl is bored.. we have did anything and everything and she just wants her home. There truly is no place like home. We have bought more toys.. and went for a walk/stroll today. She loved that. Not even a mile down the road there is a beautiful park.. it's just a small area with beautiful trees and fountains.. there was no one there so we walked around there for a bit. And it was a nice and peaceful. I will be posting these pictures when we get back home too. Ok, so I have so many pictures to post it really might take a week long of post to catch up. ha. But they are so worth it. Talked to Bryson and Brenna again tonight.. Brenna had a tball game and Bryson hung out with his friends at the game. Ahhhh, I remember those days when I was little.. they are growing so fast (tear).

I know my post are a little spacey right now.. but I promise starting tomorrow.. I will do better.

Here is the "discharged" post if you had problems viewing it.
---------------------------------------------------------------------



A lot has happened in the last two days. As you have probably read, the only thing we were waiting on was for Bentley to gain weight and keep her meds down so they could take the IV out. That was yesterday morning.. later yesterday when the doctors made their rounds.. they informed us that the fluid around Bentley's heart and lungs are GONE! Therefore, she no longer needed medicine for that. The only other medicine she was taking was a stool softner which her body resolved on it's own. And she quit taking her pain medicine on Friday.. yes, that is right.. major open heart surgery (bypass machine and all) on Wednesday and off pain medicines Friday evening. They could have continued giving this to her through IV, but she did not need it. She showed no signed of pain what so ever. As you can see in the pictures she was happy as always. So back to the update.. fluid gone means no meds. Problem one.. solved! As far as the weight gain goes.. last night at midnight she weighed more.. earlier yesterday they did say she would need to gain weight for 2 more days, but HER doctor gets the last word.. not the floor doctor. He is not concerned about the weight at this point. He thinks everything looks great and could't be better. He even said.. no reason to wait 7 days for follow up.. we will be going to her follow up this Friday. YEAHH!! Then we will head home. I know it seems like everything is moving so fast, and sometimes it does not happen this quick, but it does sometimes.. and in our case there is just no reason to be there when she is ready to go. Bentley is so ready to be out of there, she cannot get any sleep there, at all! So we are relieved to be in the hotel.. where she can rest and recover even more. And if you were wondering what ever happen with the medicine issue.. the doctors seem to believe that Bentley was making herself vomit. As soon as the medicine hit her tastebud she would gag and vomit. They did say older kids do this all the time, but little ones like Bentley do not.. so we were clueless at first. But after becoming quite creative in giving her medicine to her this is what they have concluded. We are extremely happy with the result of everything.. surgery, progress, doctors (all so amazing), nurses (some better than others), and such a great hospital. For those of you that are wondering who did the surgery.. it was Dr. Fraser at Texas Children's. I do not have enough words to thank this man. He is brilliant and God saves lives through his hands. I haven't said anything about Bentley's incision from her surgery.. you can see a little peaking out of her shirts in her pictures but you can't really see it. You are really seeing tape and medicine (to keep it clean) over the incision. I cannot believe how small it is.. I was in shock. I was really expecting it to look so bad, but it is tiny. So impressed!!!


As a lot of you know, Bentley is a very active baby.. she has been extremely bored the past few days. We finally discovered these wagons they let you pull the kids around in, we were all for it. Daddy pulled her around while mommy took pictures.. tons and tons of pictures. She loved it! The girl was turning heads.. she is wearing the cute leg warmers and bow from another heart mommy, Shannon. We love them!!!

Hope I covered the latest updates in this post. Everything is happening so fast and I am so short on sleep... I'm just not thinking clearly. So if there is anything you are wondering just ask in a comment and I'll post about it next time maybe.

We couldn't be happier right now.. well other than being with Bryson and Brenna too. But about the surgery week.. we really are in awe of everything about it. It all happened so SLOW, yet at the same time it went by so FAST! We are just so grateful with the results of everything. It was tough, extremely tough. Would never want to go through anything like this.. but it was so amazing to feel God so close to us. I mean really.. We have never been more strong. The feeling is really indescribable.. all I can say is He was with us.

I owe so much to all of you. We are so grateful for the prayers, although we are not in the clear... God has answered so many of your prayers for Bentley. All of your sweet thougts, prayers, and words of encouragement have blown us away. They have kept me going on a daily basis and I will never be able to show you how much that means to me! A couple of you have emailed me about Bentley's bracelets.. I am so sorry I have not responded. I have been reading all of my emails just taking a little longer to respond. You can still buy them.. we have many.. too many. I will email you back soon. Promise!

If you know Bentley personally, you know she DOES NOT like car rides. Therefore she does not like her carseat. Well.. when we were about to leave.. she spoted it beside her and daddy and she made a big leap for the seat. She wanted to be sitting in that car seat more than anything at that very moment. She was ready to get out of that place. Not even 5 minutes after sitting in the car seat this is what she did. Yes, fell alseep. Finally she can rest without being messed with every 4 hours.

A fabulous blog friend Kristin came to the hospital to visit us today only to find we were discharged.. I'm so sorry Kristin, I hate for you to have gone out of your way when we just left. Glad you got to see your cousin. Maybe one day.. =)

And like I said.. if I forgot to mention something.. just ask!

Bryson and Brenna, we MISS and LOVE you both so much!! Glad we got to spend a lot of time together during the week of Bentley's surgery. But now that you two are back home with Nana and Papa.. we are going to miss you both like crazy! This is by far the longest we have ever been away from you, and it's going to be hard for us. Just know we are thinking about you every minute and I know I am driving you nuts with all my phone calls.. but that's not going to stop!! Love you!!! =)