Thursday, May 28, 2009


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!!! =)


  1. Always praying for sweet Bentley here in Oregon! :) I so love the part of you discharge update where little Bentley was anxious to get into her car seat~lol! Go get 'em little one! Sounds to me, this little sweet pea is ready to take on the world! Have a safe trip HOME!(((HUGS))) G'Ma~rella

  2. Praying for Bentley today. I hope you guys have a quick and safe trip home! Can't wait to see all the pics. Hugs

  3. Sending thoughts and prayers your way! Hope today goes great! (I am sure it will)

  4. Prayers for a GREAT appointment today!

  5. Hi Crystal, I was excited to be able to see your blog post today. At first it was blank again,...and then all of a sudden it loaded and it was all there. I was so glad!

    I loved the pictures of Bentley riding around in the wagon. She looks so good!

    I know she will be so ready to be home again. I think the car seat episode proved it.

    I am praying that the appointment today goes well, and that you will be on your way home soon.

    Oh, and I have felt that peace, and God's presence that you were talking about. During the surgeries and trials that my daughter Lynnette went through,... we all felt His presence so strongly. It is so wonderful,....HE IS SO WONDERFUL!

    Safe travels home dear ones.

    Continued Blessings!
    Linda @ Truthful Tidbits

  6. Praying that you are on your way home soon. Be safe.

  7. Praise the Lord!!!! I'm so thrilled that Bentley is going home. I will continue to pray for good reports for her in the days and months ahead. She is absolutely the way!!! What an absolutely perfect little sweetheart!

  8. I hope the appointment when great! Can't wait to see new pictures of that sweet face!

  9. It's absolutely amazing to see a little one, so small, just sitting up as cute as can be and healthy looking and so happy after having MAJOR surgery. I've seen a few people, all adults, after that kind of thing and they are WASTED after that!
    So happy she's doing well, have been praying and keeping up with your blog.


Related Posts with Thumbnails