Wednesday, April 8, 2009


With the help of a few family and friends there is now a medical fund for Bentley starting today. This is something that several people have contacted us with since the beginning of our journey and we have always turned the offer down until now. Our health insurance covers a portion of Bentley's surgery.. but we are responsible for a certain percent of the open heart surgery itself, along with a rather high deductible times two because of the way the year falls with the surgery date, portion of all Bentley's many appointments/testing, and we are also responsible for Bentley's special formula she must have that insurance usually covers for most babies because it is like a second mortgage, but they have refused to cover any of Bentley's. Our pediatrician has fought this for a while, but insurance would not give in, the list goes on and on.

Bentley just loves her bracelets! She has one in ever color!

If you have not read the beginning of Bentley's heart journey, here is a very short version.. read the full story here. I am going to try to keep all emotion out of this because I tend to ramble.. We had the perfect pregnancy, delivered a healthy baby girl in August 2008.. or so we thought. When Bentley was just 2 days old the pediatrician heard a heart murmur. After further testing it was brought to our attention that Bentley has what is called Tetralogy of Fallot. Details and picture on TOF here. To break it down TOF has four defects in the heart, it is a complex heart condition that requires open heart surgery for survival. There will possibly be two more open heart surgeries in the future.. this will remain unknown until Bentley goes through her first open heart surgery. With TOF we have to monitor Bentley's oxygen level closely.. with TOF the heart is not failing, the child is suffocating. So her oxygen level must remain in a safe range. Because of this Bentley is not allow to get upset and cry excessively.. this will cause her oxygen level to go down and possible bring on a tet spell which could cause her to quit breathing. Now we were tested here. I nursed Bentley for the first couple of months, but with the stress of everything medically going on I could not continue. We had to start her on formula. Her pediatrician monitored her formula since we ran into problems with it. We tried everything only to find that everything brought on excessive crying, no sleeping, vomiting, and constipation. These are not okay for any child much less one with a heart condition and those are not connected with the heart condition. So we searched and searched.. finally found the perfect one. It was rather high.. so we went to our insurance with it to see if they would cover any of it because most insurances do. They refused to cover it because Bentley's heart condition is not genetic. They only cover medical conditions that are genetic. What? Are you kidding me, what difference does it make. If the child is sick the child is sick. Our pediatrician along with us, fought this. It was just not right.. they cover other children's but not Bentley's. This formula's price is unreal, almost a second mortgage. But they wouldn't give in, so we finally gave up. Bentley is still on this formula. Almost 8 moths later.. many ekg's, echos, cardiology appoints, oxygen level appointments, synagis appoints, and so much more.. we are now 6 weeks away from surgery. Trying not to count down...

Wristband Details:
  • $5.00 each

  • If 6 or more are purchased, email me and I will give you a price break.

  • Wristband reads "♥ I Heart Bentley ♥"

  • Available colors - brown, light pink, white, hot pink, black

  • Sizes available - adult & youth

  • You can submit payment through paypal or by mail. Email me to let me know which and I will give you that information needed.

  • To order -simple email the colors and sizes you would like to receive.

More Details:

Pre-order your bracelets now. The bracelets are currently in production and expected to arrive in 1 -2 weeks from today. Your bracelets will be sent to you as soon as they arrive and you will be notified.

Again and again, thank you sooo very much for your love, prayers, and support. It is what keeps us going. I am overwhelmed with how amazing all of you are.. I am thrilled to have started this blog and met so many wonderful people.. I am also excited to know we will always have this keepsake that I can show Bentley when she is older. I will be able to show her everything and she can see just how special she is and how much support she and we had/have by reading all of your comments. Thank you for everything. Please continue to keep Bentley in your prayers as the surgery soon approaches. I know we still have 6 weeks but all I can think is 6, 5, 4, 3, 2, 1. I try not to but I can't help it.



  1. I'm emailing you right now with my order! I am so glad you decided to do this! I love it!!!!! Also thank you so much for your sweet comment, you are so amazing and I thank you so much for being there for me!!!

    AND look at her chuncky cheeks I just want to pinch them!!!!!!!

    Love you!

  2. Crystal,

    I have been so behind on blogging. Love the bracelets...will place an order soon! Working on posting about your giveaway too. So many things to do, so little time.

    Also, I have been so excited to see all of the new people following your journey. Things are continuing to change everytime I come to visit your blog. So exciting!!!

    P.S. Love the pics of Miss Bentley!!!

  3. This is such a great idea and a great way to help you and your family. I'll be posting this on my facebook and on my blog later tonight. I'll also email friends and family to see if they can help out as well.

    By the way, insurance companies can be sooooooo incredibly mean, all the care about are codes and money. We've had to switch out companies just to get treatment for my son's hearing aid.

    I don't even remember how I got here to your blog, but God must have lead me to Bentley's story to love and pray on her and your family.


  4. i am so going to order one for us!!! I think this is an awesome thing!!

  5. ahh!! yeah.. love the bracelets and esp love the lil model for the bracelets:) Do you mind if I post something about the bracelets and a link to your blog from mine?? I am going to email you my order:) yeah! Praying for you guys all the time:) hugs:)

  6. I just sent you a email to order mine! thank you so much and so glad we could support.

  7. Oh wow!! This is really amazing. I am on it right now. That angel deserves it! (and ya'll too :) I have gotten where I have to come on here everyday just to check on her

  8. Baby girl is simply a gentle, tender soul. But she's also strong and I have faith that she'll pull through. I was looking at her in the pics and couldn't help falling in love with her. So tiny and darling! It also dawned on me - now that we know she was never allowed to get really upset and cry too long - that you are seriously EXHAUSTED. I remember when I was teaching Charlie to sleep through the night at four or five months, I'd let her cry for 10 or 15 minutes at a time and she was UPSET. Of course, she didn't cry by the third night and she's been sleeping through the night since, but it made me realize that you probably haven't really had an uninterupted night of sleep. Bless your heart. This season won't last long. She'll grow up and get better and better. And eventually she'll be able to have whole milk too!

  9. Oh, and I'm trying to decide on my favorite colors and will be ordering shortly.

  10. If you don't mind me asking...what formula is Bentley on? I work for an OBGYN and know lots of reps...might be able to get some hook-ups for you! Let me know! You can email me if you want at

  11. Oh my, your little Bentley is so yummy, I will definitely be placing an order.

    Do the bracelets fit 9 month olds?

    God Bless

    Grayson & His Mommy


  12. Angelique,

    Thank you! The smallest size is youth and it fits my 5 year old daughter and 7 year old son. It is a little big on my 5 year old but works for her.

  13. Hey Crystal!! What a great idea!! Do you mind if I post this on my blog?? Or on my myspace??? I would love to help spread the word! Also..I need some bracelets! :o) I would also like to talk to you about doing a Bentley Bow....Please email me or call me!! I would LOVE to do this for you! 9727466744

    Thanks hon!!


  14. Hey Crystal,

    Just finished my blog devoted to Beautiful Bentley, Baby Seth, and Baby Jonah.

    Here's to sporting that awesome bracelet for a darling baby girl!

    Will be praying for the success of this benefit and for the health of Bentley!




  16. Yaaay I'll be ordering tomorrow when I get paid :)

  17. I will be placing an order today! We will be praying for your beautiful little Bentley.

  18. Have you thought about donor breastmilk instead of the pricey formula? You can locate a private donor - no money exchanges hands, except for any shipping costs - - I am an on-going donor and have donated while nursing both my children.

    My prayers are with you and your precious child.

  19. I just emailed you with an order! Praying for you all!

  20. She is so beautiful, and she in my prayers!

  21. I can't wait to wear my fabulous bracelets in honour of this gorgeous wee girl!


  22. I just came across your blog from Owen's. Bently is such a cutie. My son Jack was also born in August and has HLHS.

    What kind of formula do you use? If it's progestimil, I have 4 cans I can mail to you that my Jack refuses to eat. Just let me know. Those insurance companies can sure be sticklers.

    Take care :)

  23. I came across your blog from two friends of mine actually. Evidently, God really thought we should connect! My son Zach has two heart defects, one being T of F. We have had two heart surgeries last year and will have another in about 6 months. Zach is doing really well, and getting stronger everyday. You can view our blog at Please know you can contact me anytime if you have questions or just want to connect. I will be praying for Bentley and all of you! Amy

  24. Do you mind if I post a link to this on my blog? I would love to share this with more people. More prayers can't hurt, right? :)

  25. Hi there, I know you're busy but I wanted to let you know that I have an award for you on my blog. Talk to you later!

  26. You may not see this comment, but my best friend has TOF. She's 23 and got married a month ago. I know not all cardiologists known the outcomes of most heart defects, they're still researching mine and I only had ASD, but have had new symptoms pop up.

    I just wanted to give you words of encouragement about my friend. I know this time must be very stressful to you & your family.

    I will keep Bentley in my prayers.



  27. I found your blog from 'Kelly's Korner' and will be praying for sweet Bentley! Our second son was born with TOF as well, and had his repair when he was 10 weeks old. He is now 8 and is the most active and energetic of our 4 kids! Please feel free to email me if I can help in any way about what to expect! :) Praying for you guys,


Related Posts with Thumbnails