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.
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...
- $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 firstname.lastname@example.org the colors and sizes you would like to receive.
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.