Tuesday, May 19, 2009

DAY BEFORE SURGERY

Finally.. a post with pictures! We had a very busy day full of test and speaking/meeting with several different people. Bentley has gone through a lot today, seems like every time we met someone they were poking her or disturbing her in one way or another. Bless her heart! But it must be done and she came through like a champ! All of the testing came out great which means Bentley is ready for her heart surgery in the morning. We were admitted in about 3 this afternoon and have just hung out here in the room every since. Did I mention that Bentley will be 9 months tomorrow? She weighed 14 pounds 6 ounces today.. 99% oxygen.. and everyone and I mean everyone that had to work with her today could not believe how someone so tiny can be so strong.. she just blew everyone away today with her strength! I am so proud of her! Here are a few pictures from today.





Bentley's surgery is scheduled for 8 in the morning. We were told they would come get her anywhere between 6:30 and 7:00am and the surgery should last about 6 hours long. This is going to be the hardest part for us for sure! Please keep the prayers coming.. for Bentley, the amazing surgeon, and the amazing medical team that will being performing the repair, icu/floor nurses, and everyone else involved.. also if you have anything left in you.. maybe a little strength for Ryan and myself. We have had a rough 9 months emotionally.. I have had quite a bit of anxiety today.. it seems so real, yet it doesn't. We're here.. we're living this.. never thought we would.. but we are. And it plain flat HURTS! But it is time, it is time for us to get past this.. and I am happy for that. I hurt more and more every day right now, but we are that much closer to having this BIG dreaded day behind us. Just please keep us all in your prayers.. as the pain I feel to see my child go through such a HUGE risky surgery is undescribable. No words can express the way will feel.

I had a super cute video of Bentley but I cannot get it to work.. I will have to add this later. Along with many more pictures.

We thank you so very much for your prayers and support...

56 comments:

  1. Prayers for you and your sweet baby girl are coming from Seattle, WA. My 16 yr. old son has CP and has had several surgeries, so I understand the fear you are feeling. I'm praying the Lord will embrace you and give you his peace and comfort. I'm also praying the doctors will have the Lord's hands guiding theirs and that you will be loving on your daughter, praising God for the successful surgery tomorrow afternoon.

    God bless you!

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  2. Hi there! I am the mom to a wonderful 5 year old boy who was born with Complete AV Canal Defect. Basically, the outside of his heart formed, but the insides did not. So far, he has had 2 open hearts - one at 3 months, one at 13 months - and will need more in the future. I TOTALLY know what you are going through right now. Just wanted to let you know that we will be praying for you all night and all day tomorrow. Our CHD group, TOUCH, has been notified and the prayer chain has started for you.

    I'm sure that your docs have told you this, but the fact that she hasn't had this surgery before now is GREAT news. She is strong. Tomorrow will be a big day for all of you, but just know we are all behind you. Hugs to all of you!

    Steph and Christopher in IL
    www.carepages.com OurLittleMan

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  3. Bless her little heart! You two are such amazing parents, you are doing what is right for your baby girl. She will do great and be an amazing fighter just like you know she is. Email if you need anything.

    Madi is cheering for her heart friend, Bentley! I did it and so can you!

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  4. Hi, I found your weblog through April's Mom just in time to offer you my prayers and empathy for tomorrow. Although I am sure you will be too anxious to do anything like read weblog comments!

    My daughter went through open heart surgery and did well. 99.9% of children do. The surgeons are really good at it now, and at my hospital they were operating on two children a day, five days a week. And you won't find nicer people than the ward nurses.

    Although it is awful, scary, painful knowing what your child will go through, also keep in mind it is routine for the doctors, and your daughter is strong and will heal very quickly.

    I know so much how you are feeling!! And none of my comforting words will help much. But know this at least - you will get through it, you will have the strength, even though 6 hours feels like an unbearable length of time. Before you know it your baby will be home with you again, her scar will have faded, and she'll be fit and healthy, with no memory of the pain and stress of her surgery.

    You are in my prayers.

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  5. I am constantly thinking about you and praying for little girl.

    Shelby

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  6. Our family name is the same as your little one's name so she (and your family) have been in our prayers since we found you a few weeks ago.

    We know that "God looks after those who have young" and we have seen many miracles He has performed in lives both young and old here in Australia and through blogs.

    You are close to our hearts, especially in these days.

    We're anticipating another miracle with His loving fingerprints all over it!

    With love from a sister in God's family and fellow Mum of 2 and one on the way:)

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  7. I will be praying this morning for Bentley while the surgery is going on...please keep us posted. Hang in there, and rest when you are able.

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  8. Be strong. God bless you all. Lovingly Michelle - South Africa

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  9. Praying for all of you this morning!!!!! Been thinking of you...I was laying in bed this morning and thought about Bentley so i assure you she's on lots of minds today. Sending love!

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  10. Okay you are in Texas....which means if is now 6:45 AM your time. Which means they may have just came and got Bentley are about to. I am thinking of you.... and PRAYING for her.

    I know you will probably cry when they take her away.

    I know you will be on pins and needles.

    I know how your heart will slightly break...

    I know you will worry the entire time she is away from your arms, in surgery.

    I KNOW, Mama!!

    But know, she is in the strongest and most loving and most protective hands possible where ever she goes.

    There is a picture I have seen before and I want you to try and vision it for me..... ready?

    Vision the doctor with the blade and tools working carefully on Bentley. Now vision God standing behind that doctor with his hand holding the doctors hands carefully guiding him in all the right directions on Bentley's little heart.

    Doesn't that give you goose bumps?

    It will be REALLY hard to see her womb when its over with. Just be brave and give her lots and lots and lots of kisses, and God many, many, many thanks.

    I am going to stop and pray now.

    Hugs

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  11. I'll be thinking and praying all day today! May God keep you in his and hand and comfort you!

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  12. I started following your blog recently and I also follow you on Twitter. Bentley is so amazing and such a sweet little girl. She is only a couple weeks younger than my daughter. You have an amazing family. The first thing I thought of when I woke up this morning was of the surgery Bentley has today. Just know that Bentley, all of you, and the medical staff are all being prayed for. I will be saying silent prayers all throughout the day and will be checking Twitter all day for updates! Bentley will do great-the Lord will take care of her-and she will be even stronger when she is done with this whole procedure! God Bless You All!!

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  13. Thinking and praying for you all!

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  14. I'm praying so hard for you all today. She is in great hands and the power of prayer is an amazing thing.

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  15. I pray that leaving Bentley wasn't too hard. I pray that you & Ryan have peace and that this morning flies by with steady updates about Bentley. I pray that y'all find laughter today through this journey, it helps! Praying without ceasing.

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  16. You know I understand sort of how you are feeling, just that I've been on the other side, the one going in for surgery. I know today will be the longest day ever for you as you wait to get to see her after surgery. I will be praying!

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  17. Will be praying for Bentley today!

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  18. Having been in your shoes 3 times, I know exactly how you are feeling.

    Yes, it is the hardest moment I've ever had to endure as a parent. But with it comes some of the most satisfying... knowing that your baby is "fixed"... holding her for the "first time" again after surgery... walking OUT of that hospital instead of in.

    Know that we'll be keeing you all in prayer! Try to sit back & let HIM take care of things... He knows what He's doing!

    Tina & Vaeh:0)

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  19. I am praying for your entire family in Big Cove, AL. May God bring you a peace like no other. Bentley is a remarkable baby girl, and I am looking for remarkable results today! I have a nine month also, and I just know he and Bentley would be great friends (if we lived closer)!

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  20. I'll be thinking about beautiful Bentley today and your whole family. I'm hoping that the surgery goes perfectly and that her recovery is quick. As you said, she is so strong, I'm sure she will come through this with flying colours!

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  21. I woke up this morning and Bentley immediately popped into my head. I will be praying non-stop for her. I wish I could be there to sit with you today! My daughter has Kindergarten graduation today, or I would be there. Just know I am praying and having complete faith that Bentley is in excellent hands, both here on Earth and in the Father's hands.

    Kristin

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  22. Oh my word, can she get any cuter? Bentley is just beautiful! I am on my knees right now for everyone involved in this big day. Sending lots of love and hugs your way! ;)

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  23. Will be praying for your sweet family all day!

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  24. Praying for ya'll from East Texas! You're in the best hospital to be in, and we're praying God guides the surgeons' hands! The waiting is the hard part. I've been there with 2 of my 3 kids - 6 hour plus surgeries - that truly IS the hardest part - praying for peace for all of you during this time.
    I'm grateful for the twitter updates!

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  25. I work right across the street from the hospital you guys are in. If you need ANYTHING please let me know! Food, tissues, absolutely ANYTHING!!!!

    I am praying for little Bentley and am just a quick message away.

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  26. You don't know me - I found your blog through my daughter's. I am Hudson's Mimi. We are praying for your precious child and for all of you today and in the days to come. You will be amazed at the strength God will give you when it comes to your child. You will also be amazed at the bond of friendships you will forge in the waiting room. It is somehow comforting to be with someone who is or has gone through the same thing. Remember "Be strong and courageous and do not be afraid. The Lord your God will go with you each and every day".

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  27. Praying for your beautiful daughter and your whole family today!

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  28. I'm delurking to let you know I'm praying for Bentley! But I have so much confidence - My brother has been a life long Texas Children's Hospital Heart Patient. He loved his Peds Cardio Doc (that's "in the know" abreviations!) so much that he didn't transfer to an adult doc until last year, and he is 23. TCH is WORLD CLASS, and you are in the best earthly hands!

    PRAYERS FOR YOUR FAMILY! I'm down the street, and can tell you that the entire Baylor College of Medicine Psych Department has Bentley on the brain this morning! There's another Texas Medical Center employee that just posted, so I think you have the whole place rallying for you, actually.

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  29. Oh! And by "life long TCH patient," I mean that since the amazing interventions they did when he was a toddler in the early 1990's have been so effective that he only has to see his heart doc twice a year for check-ups. He's an active, healthy adult now! I'm praying for the same success for Bentley!

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  30. Praying for your daughter, family, and the doctors today!

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  31. I'm thinking about all of yall. I wish I could be there right now. I have gotten so many texts and comments from people that are all praying for yall. Keep your head up!

    Love Yall
    Aunt Michelle

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  32. Hi. I came over from April Rose's page and wanted to let you know I'm praying for Bentley and all of you.

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  33. praying for Bentley today! I'm praying for steady hands of the surgeons, and strength for Bentley. Praying also for you & Ryan - that a peace will calm your hearts & minds, and that you'll rest knowing that she is in the great Physicians hands!
    Much love & many prayers today!
    ~Krista from Seattle

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  34. Praying for you today - I can't imagine what you are going through as a mom, waiting through Bentley's surgery. Minute by minute, place your trust in our faithful Heavenly Father - as often as you need to. He is holding Bentley even right now! He is guiding the surgeon's hands. He is in the OR with her and nothing is escaping His notice. I'm praying that you are surrounded by His thick presence, a sense that you are loved, and are experiencing peace in the middle of what may just be the most difficult day of your life.

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  35. I can't stop thinking of Bentley, you, Ryan, and the family. I'll be praying all day long. I'm so sorry you are having to go through this, but you are not alone...it looks like you have a great family and friends with you. You also have great "blogger friends" praying and thinking of Bentley and your family!!!
    Christie
    Ennis TX

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  36. We have been thinking about you and PRAYING all morning!!! Bentley, you are an angel, so strong and brave!

    Crystal.. I know how tough this is. It stinks. Post op is the worst. We will continue to pray for your strength. Bentley will be great!! :)

    Andrea

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  37. Crystal - praying for you and little Bentley today. I have posted a request on my blog. May the Lord bless you and keep her safe in His arms.

    Beth

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  38. Thinking and praying for you and Bentley today .
    What a beautiful and brave little baby !

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  39. I can't say that I understand what you are going through, but please know that you and Ryan are in my constant prayers for strength and calm. Sweet Bentley is in my constant thought and prayers from the moment I woke up this morning. It will soon be over and you will all finally be able to move on with a completely healthy baby girl! Can't wait!!!

    Still following you on twitter and constantly thinking and praying for you all!

    Analiza

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  40. just got the twitter she is done! Can'tt wait for more updates praying praying praying!

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  41. From one TOF mommy to another...praying for you ALL and know Bentley is going to do awesome!

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  42. Praying for you all this morning!!!

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  43. praying and can't wait to hear an update!!

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  44. My best friend has a daughter with TOF. Hers was repaired around 3 months although she wasn't showing signs of problems (they had to fly over 1000 miles away for the surgery though, so that is probably why they did it early). She is now an almost completely "normal" 5.5 year old. Her valve needs replacing soon, so she tires easier than some. But other than that and being vigilant about preventing an infection getting to her heart, she is just like any other little girl. Most people don't even know she has a problem!

    Hopefully Bentley will be the same way. I am glad she made it out of surgery. Hopefully you will be able to hold her soon. Praying that the recovery goes quickly and smoothly!

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  45. Just want you to know I'm praying for Bentley today (any you!) I'm Dylon Smith's cousin. We are all anxious to hear about Bentley's surgery and recovery! God Bless You.

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  46. I am so glad the surgery went well. I thought/prayed all day about Bentley. She is so awesome!

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  47. been praying for you all day Crystal and for Bentley and the doctors and everyone involved. Looking forward with hope to a great report and update when you have a minute. know you are being held up in prayer to our God who is the great physician and healer.

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  48. Glad to see Bentley is out of surgery. Praying for her and her whole family through the surreal journey we know all to well from this past year with our Rudy (HLHS). Hang in there--you're tougher than you ever thought you'd be.

    Peace and Comfort

    Rolf
    www.rudysbeat.wordpress.com

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  49. Praying without ceasing for your entire family. May HE hold you...as only HE can, today and always,
    Kaye
    Psalm 46:10

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  50. Hi there! I found your blog from Kelly's Korner blog. We live in Houston and my 3 year old has a chronic GI disease. We spend a lot of time at Texas Children's Hospital. It is a great facility and the staff and doctors are amazing. I know you are in good hands. If you have any questions about places near the hospital to eat, activities at the hospital, anything at all, I'ld love to help. You can email me at picklechic@hotmail.com. Good luck to you and your sweet baby Bentley. I will keep you all in my prayers.

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  51. Have thinking of you guys all day! I prayed for you first thing this morning. Prayed that Bentley would be the strong little girl that God meant for her to be, prayed for the doctors and the knowledge and skills that God gave them and prayed for you and Ryan that you will use the strength and Faith that God gave you to make it through this day! You have a lot of support out here in the "Blogger World"..just remember that we are all praying for you and are by your side!

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  52. She's the most beautiful little girl I've ever seen! God bless Bentley and your sweet family.

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  53. Your little one and your family are in my thoughts and prayers.

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  54. I just wanted to leave a comment and let you know I am so happy things went well. I have been up since early this morning checking in to see how little Bentley was, and of course the family. It has just filled me with joy to hear she is doing well.

    I will keep you guys in my thoughts and prayers.

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  55. Your family and Bentley will be in my dreams and prayers tonight!! I will definitally be wearing my Bentley bracelet tomorrow! All my love!

    Kayla

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  56. I'm praying for your daughter Bentley... my thoughts and prayers for you and your entire family.
    --Susan

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