Friday, May 22, 2009


It's me again. Bentley is still in ICU so I am able to post.. it's late and we are exhausted so I am going to make this as quick as possible. She is still doing very well. When we went to see her the first time this morning at 6:30 the first thing her nurse said is "she is so STRONG!" All of her nurses have been amazed with how physically strong she is. She was digging her feet and head into the bed and lifting her botttom and back off the bed.. not a little, but a lot! And yes, she started doing this yesterday.. SAME day as surgery. So when we went in for the first time this moring her nurse was talking about how strong she is, and also informed us Bentley tried to wake and get up 4 times during the night. It was really too early so they would sedate her so she would go back to sleep. But today they mentioned the next time she woke up they would not sedate her.. Bentley's ventilator came out today, and about an hour after she woke up for the first time.. Ryan and I were right there and I have to say it was one of the hardest times of this whole stay. She would try to cry but her voice was horse from the tube.. so she did not sound like herself, she would grab at us, turn her head everywhere, she wanted up, she wanted to be held, and she just wanted some lovin' from mommy (or I think so at least). It broke my heart, really.. I felt so helpless just standing there leaning as close as we (mommy and daddy) could.. holding her hand, talking to her, kissing her.. but it's just not the same. It's not the same at all when you cannot hold your child. OHHH how my heart ached so bad that moment. I just wanted to hold her and make it all better. She also made me smile so big... if you have been following my blog you will know that Bentley LOVES her paci.. well.. we asked the nurse if we could give it to her because we just knew it would comfort her. She gave us the okay so we tried it out.. Bentley spit the paci out, so I just leaned over her bed and held it in my hand. Bentley (tied up arms and all) reached over and took her paci and put it straight in her mouth all by herself! I just loved it. I know this doesn't sound like much, but it is so Bentley and she loves that paci. I just felt so good know she was able to do that herself so soon.. in a way it was her telling me she is okay. I would rub her head and she finally went to sleep. Later today she woke up a second time, this is what we saw when we walked in the room...

Bentley had lifted her leg up way up there.. all by her little self. This is the second time she woke up and stayed up for a little bit. She is something else!

Over all everything has gone well today.. she even got to drink a little pedialyte tonight. She is doing so amazing.. and she even looks so amazing for the day after surgery. She is so beautiful!!! She was a little dehydrated this morning, but that was fixed quickly, this evening she started having a little fever. We were told that this is sometimes expected but they will need to watch it closely, and if it stays or goes up they will begin running test. So please keep the prayers coming.

We are so proud of her. Her strength gives us strength along with God. We could really feel Him here with us yesterday and today. We have a whole different outlook on this journey than we have ever before. God has blessed us in so many ways.. we know this.. and we see this!!

Tonight my parents took the kids to the Houston Astros Baseball Game.. a big thank you to Kristin and her family for sending tickets to our children to have something fun and exciting to do. We appreciate that more than you will ever know! They had a blast, I will post pictures on this soon. Of course you can't go to a ball game without buying some goodies.. my parents bought the kids a couple of things and Bentley got.. a pink Astros baseball with HEARTS all over it. How awesome is that. I know we will cherish this simple little baseball forever, there is so much meaning behind it!! Thank you Kristin!!

Thank you Bonny for sending us a sweet card today! We did get it, and it put a HUGE smile on our faces! That is super sweet of you!

My sisters also suprised us with a visit today.. I am so glad!! They brought Bentley the cutest little bracelet.. and me a necklace that stands for.. BELIEVE!! Perfect. Thank you, I love you both!!


  1. Crystal -

    She is looking mighty fierce!

    I stayed up for this update and thank you so much! I'm so glad to know that she is doing well.

    My continued prayers for Bentley and constant calm in your hearts.

    Any idea how long she'll be there?


  2. I will agree with you and the nurses. She is a strong baby :)
    She is beautiful. I am so happy that everything went good for her and I will continue thinking about her for a quick recovery.
    I don't know you personally but Benthley and your family have been in my thoughts and prayers all week.
    Have a good day .

  3. She's such a strong baby, glad everything is going well and hope her quick recovery continues!

    Love always


  4. So glad to hear that she came through everything great. Continuing to pray for you all.

    The Phillips Family

  5. Crystal,

    I am crying tears of joy right now. Those pictures are so sweet and I love her precious baby toes. She is a strong little girl. I will pray that she is fever free today. God is so good.
    Keep us posted.

  6. the tears of sliding down my face for this is the site I wanted to see weather with tubes or not . it shows real ness it show the Glory of Jesus that all things with him are possable vand can happen . whata stong daughter you have look out cause soon she will be fierce man you has powers and God has set her apart from others with a more kind sweet heart . lets watch this fairytale un fold as the weks progress and we see that God praise us in the mid of the storm.

    hugs and kisses i have this connection with you and you family and it stong and it is all God . The finding your blog to the fact that yesterday was the day . all things happen if you believe in Jesus.

    May God bless you all with strength .

    michelle lee @ circle of life

  7. She's doing great... :) It won't be long and you'll be holding her.

  8. Can I just tell you how wonderful it was to see her little face. Absolutely Precious!!!! I feel so bad for her with her arms strapped down like that...bless her heart...I can't imagine what it's like having to see her that way and knowing she wants you to hold her but not being able to. I pray that you are able to scoop her up in no time...are they saying how long before you might be able to hold her? Continuing to pray for your precious family!!!!! I'm so grateful I found your blog :)

  9. WOW she is doing great! What a beautiful baby and I can't believe she was up like she was in some of those pictures. She is amazing. Praying for continued improvement for Bentley. I hope your other kids enjoyed the baseball game!

  10. WOW, no ventilator already! She is so awesome. I love the pic with her crossing her legs. She has such a cute personality even when she isn't feeling good! Still praying for Bentley!

  11. I have to admit..... through some blurry eyes while reading your post, when I got the picture of Bentley looking up at you and her legs crossed, I started laughing. She is too funny. Just totally chilled, and looking at you like saying "hey guys, whats up, welcome to my crib." LOL

    Yesterday I photographed two infants at the being an 11 week old little girl who just had open heart surgery...... and the other one was a 4 day old little boy, who was being left in his room to die, because his heart couldn't be fixed.

    Okay so I am going to go back and smile over her pictures again.

    Eat her up is what I want to do. She needs a BIG bow on her head mommy. It just not the same LOL

    God Bless.

  12. She is an amazing little girl, isn't she? So precious! Praise Him for all He has done! I am still praying for you all. Hugs!

  13. That is so amazing how well she is doing!!! She looks great and I hope mommy and daddy are hanging in there. That sweet baby has wonderful parents which is probably why she is so strong. I continue to pray for you and miss Bentley!

  14. Oh she is looking so good. What a fighter I am so glad that all is going well. We will pray for the fever to go. I love that little propped up leg!! She is so sweet. I am praying for fast and complete recovery but I am also praying for strength and energy for you and your family. I can't wait to see pictures of you holding that sweet baby!!!

  15. Hi Crystal! I am so glad to hear Bentley is doing well!! She is so strong and so beautiful! I know exactly what you are going through with not being able to hold her. We had to go through that when Olivia was in the NICU. It is so HARD! You see your precious baby laying there and you just want to hold them and snuggle and be close but can't. Soon, you will hold Bentley again and then go home almost as if nothing happened! Until then I will keep praying for a quick recovery, and for safetly for the rest of your family.

    God Bless!

  16. Those are beautiful pictures!! You'll be out of there before you know it.

  17. Tears of joy too over getting to see Bentley just chilling out in her crib.....what an answer to our prayers for her to be so strong and doing so well! I am so glad the kids had fun at the Astros game! And to find a baseball with hearts all over it.....that is so neat!! I am so amazed at your strength, Crystal. I am praying that Bentley continues to do amazingly well and that you will get to hold her soon!


  18. Look at that big girl!! She is just precious! Thank you for sharing those pictures with all of us. It makes us all feel so much better to actually see that little peanut! :)

    Praying for continued strength and quick healing.

    Love and Hugs

  19. Crystal...I am so happy to hear that Miss Bentley is doing so well! It's also so nice to be able to see pictures of her. I love the one with her little legs crossed. So cute! I am thankful that she is doing so well. I pray that you'll continue to feel God's peace and presence and that Bentley's recovery will be quick.

    I'm so glad the kids had such a good time last night at the game. Isn't Kristin such a blessing? She is such a good friend and she has such a beautiful heart! Wish I could be there when she goes to visit you guys this weekend! I will def be thinking about you guys!

    Love ya!

  20. I'm so glad to read she is so strong an doing well. It's amazing how God works. As always I'm praying for your sweet girl and you and Ryan. She is beautiful!! God is GREAT!!!!!
    Ennis TX

  21. Oh how beautiful she is! Thank you for the update and pictures. It is so good to see that precious little face. I love the one of her leg propped up on her other leg! Priceless...

  22. How precious! She IS so beautiful! ..I love how her little legs are crossed in the pictures like a little lady! : )

  23. That little girl has a ton of personality. Love it! Glad to hear that she is doing well. God Bless

  24. my heart is happy that you got the card i sent. i didn't know any pod numbers or anything. that job is done. i just really truly wanted to let you know that Bentley journey has changed the lives of many. really. i now do not take one second w/ my children for granted. i have compassion for other moms out there going through such trials in there life. my eyes are wide opened. your lil bentley is gorgeous. i have praying like a mad woman for that little girl. last night as i put my youngest to bed i always stand by his window prop him up, pray out loud over him and say the same thing every single night. he heard my prayer for bentley as we watched the airplanes go by. i am so ectastic that all is well for her. i can't imagine the feelings you and Ryan are going through seeing your child like this. not being to hold her. umm, just tugs at my heart. but God is so good and he alone will give you the strength to truck on. i am also happy the kids had a great time @ minute maid park seeing astros. i had they had a blast. your family is continued to be prayed for by so many, i hope today is a great uneventful day and the fever free~~bonny

  25. Bentley is AMAZING~oh my gosh, the photo's say so much! Such a strong and courageous little girl, truly a MIRACLE in every way! God is so great and He will continue His plan of miracles for your sweet girl~all of this hospital stuff will be a distant memory before you know it~then it will be on to 'happily ever after.' Continued thoughts, prayers and (((HUGS))) being sent for Bentley and all of you, her precious family!

  26. She looks amazing! I cannot believe how well she is doing so shortly after surgery. What a blessing! I am so happy to see her so alert and giving you signals that she is okay. I know it is so hard to not sweep her up in your arms......give her so many kisses that she can't stand it anymore!!! She is a beautiful little girl. Keep the posts coming while our prayers are still going up!!!!

  27. That is one gorgeous baby for just having surgery! I don't look that good after having a shower. Praise God for looking over her! Praying for your rest and recovery sweet girl!

  28. Bentley -- YOU ARE A ROCKSTAR!!!! You're not a big puffball like you should be, you were exubated quickly and successfully, and you are already drinking! You'll be out of there before you know it!!!!

    Prayers are definetly being answered. We'll continue to pray for no infection, no chylo (common fatty leakage in the lungs after OHS) and a smooth recovery!! :)

    Thinking of you!

  29. way to go Bentley you are so awesome!!! still praying for you and for mom and dad!

  30. Good job Bentley! You are such a little cutie! I am so glad to hear you are making your mama smile!! :) Keep it up...oh and that fever monster will be gone soon! So many people are praying for you!

  31. What a beautiful little girl!!!!!!!!!
    Def been praying for y'all XOs

  32. Go bentley! What a strong beautiful little gal! And that little leg cross picture? ADORABLE!!!

    Praying for you guys continuously! Praise God for all the strength HE is giving to Bentley she is awesome!

  33. Cousin Sarah and BillyMay 22, 2009 at 1:08 PM

    Hey momma! I know that she doesn't look the same, but she really does look GOOD! She is such a fighter, I can tell that she will be a go-getter all of her life! Maybe even grow up to be a doctor after all of this that she has been through! We love you guys & hope to see you soon, I wish that we could be up there with you as well! =)

  34. She looks so good! I am continuing to pray for you all! Thanks for the updates!

  35. she looks amazing!! will continue to pray for sweet bentley and the rest of your family.
    looking forward to many more updates and pictures.

  36. That girl looks like she's ready to get up and go!

  37. Just want to say I'm praying for Bentley, I'm so glad she's doing well. Never commented before, just another "heart baby", although I'm now 25! :) These pics bring back memories!!!!!!

  38. So glad that her surgery went so well and is behind you now. Hopefully Bentley's recovery will continue to go well. Please continue to keep us posted on her progress. Love the pictures!

  39. So happy Bentley's procedure went well! She is looking quite sassy! Looking forward to more good news soon!

  40. Crystal and Ryan, I am rejoicing with you over the success of Bentley's surgery,... and how well she is recovering.

    I thank God that she is so strong. I loved the pictures of her and how she crosses her legs,...that is so cute.

    I am looking forward to each update so that we all can see how our prayers are being answered.

    I know it seems like a long road, but by God's grace, you will get through this trial!

    Please keep track of everything and take the pictures too, to add to your wonderful testimony that you will have after this trial is over.

    God will use you to help others to have faith when they face trials too.

    We have been in similar circumstances and God proved himself faithful to our family.

    My husband and I are praying for you!

    Love, Linda @ Truthful Tidbits

  41. Wow, what an amazing little girl, and she looks great!
    I am continuing to pray that the recovery is quick, and You are able to get back home soon!

  42. I have followed your story off and on for a little while now but this is my first time to comment. Just wanted to let you know I have been praying for all of you during this time, especially sweet Bentley! So glad to hear how well things went in surgery and praying for complete healing and comfort quickly!!

  43. Oh!! I am SOOO happy for you. She looks beautiful!!!
    I bet her room is just filled with angels watching over her!!

    My heart ached alongside of you reading how you just wanted to hold her.

    Can't wait to rejoice with you on the day you can cradle her again.

    Blessings and prayers!

  44. Bentley looks really good in these pictures. Praise God that Bentley is so strong and doing so well after all she has gone through. I will keep her in my prayers that the vomiting will cease and she can grown bigger and stronger each day!

  45. I agree with the nurse Bentley is very strong! I couldn't help but to smile about her grabbing her paci :) It just shows that Bentley was still Bentley :) I'm praying that her fever goes down and stays down! Hopefully she will have a speedy recovery. Remember you and your family are continously in our thoughts and prayers :)


  46. Hello,
    I am so happy to hear that everything has went so well for you and your precious baby. I really don't even know how I found your blog, but I ran across it tonight, and began to sob. My daughter just had open heart surgery in October. She also had TOF. My daughter had a very successful surgery as well. My heart is with you, and will be praying for a speedy recovery.
    God Bless!!


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