Monday, April 27, 2009


As you know we had Bentley's oxygen and weight checked Friday.. she amazed us all once again with 99% oxygen. AMAZING! If you have been reading or if you know someone with TOF, then you know that this is just not usually the case. Her oxygen should be around the 70% or she should have already had her surgery because her oxygen already dropped so low. This is such a blessing! Her weight on the other hand is very low. Poor baby girl, she eats and eats but her sweet little heart works so hard she burns calories quicker than normal so she is just a tiny little girl. Below you will see Bentley's weight along with her brother and sister when they were her age so you can compare.

Bentley's 8 Month Weight: 13.14 pounds
Brenna's 8 Month Weight: 18.12 pounds
Bryson's 8 Month Weight: 21.8 pounds

So to break it down a little more.. Brenna was 13 pounds when she was 4 months old and Bryson was 13 pounds when he was a shocking 7 WEEKS old (Not even 2 months old, yes he was a fatty). So as you can see Bentley really is a tiny little girl. This is the one symptom that Bentley does have. It breaks my heart but I am so thankful that she has remained so healthy.. in the beginning her pediatrician and cardiologist would remind us.. to not get use to such a healthy baby because she is going to get sick, real sick and I will notice big change each month and warn me of everything to watch out for and teach me the steps to go when she quits breathing because they told me time and time again, she will eventually have tet spells (turns blue and could stop breathing). Praise God, she is 8 months old and appears to be as healthy as can be, not yet experiencing any of these things, aside from her weight.. but she has gained weight at a good pace so we are good there. I have talked with so many other heart moms and have learned that once she has the surgery the pounds will pack on fast. I am so thankful and I do praise God every day for protecting Bentley and keeping her as healthy as she is, it's a miracle itself. But of course the defect is there and we have no choice but to have this open heart surgery. I just wish so badly that we didn't have to go through this since she has remained such an amazing, shocking, and NORMAL oxygen level considering that is the problem with TOF.. but we don't have a choice.. it must be done.

I do have a specific prayer request today.. Over the past week Bentley has had a runny nose, and a runny nose only. Please pray for this to go away and have no sickness. When we are admitted into the hospital on May 19 for her May 20 surgery they will do testing to make sure there are no infections or sickness what-so-ever in her sweet body. If there is, no questions asked the surgery will automatically be rescheduled 6 weeks later. Not sure if I could handle this.. this has to be done, and it has to be done before 1 year of age.. I have always been glad we have made it this far so she could be as big as possible for the surgery and I still am. But it is so emotionally overwhelming living day by day with this dark cloud following us. I have also been happy for her to go so long without the surgery so I could "prepare" myself, but with the surgery date soon arriving I have learned I will never be prepared for what we are about to go through.

Sorry for the gloomy post today but all the emotions are coming back and hitting hard.


  1. We will be praying for her to be very healthy the day of her surgery!! I totally understand where you are coming from with the emotions and we still have 6 weeks before his surgery! Stay strong and know that you all will be so much stronger and God will give you and Bentley the strength to get through this!
    Heart HUgs!!

  2. I will most def. pray that her little runny nose goes away fast with no sickness to follow! You know that you and your family are always in my prayers! Thank you for being there for me throughout my hard times. I hope you know that I will always be there for you as well! God is amazing and thats proven with Bentley's high oxygen level!!! God bless you and yours!

  3. CRYSTAL-Bentley is AMAZING! 99% pulse ox...WOW! What a blessing! I will pray for no colds or upper respitory infections. I totally agree that another 6 weeks of waiting will be WAY too hard. I feel so bad that this "dark cloud" is causing you so much stress and emotions. It's hard because you are thankful that she could wait this long but wishing it was over with. I can't wait for you to have this weight lifted from your shoulders. You will be able to BREATH again in a few weeks!

    I found really cute leg warmers on for really cheep. Just go to children on the side and accessories.

    I want to send Bentley a gift, can you send me you or your moms address again so I can get it to you?

    Have a great week Crystal! ~SHANNON and MADISON

  4. Ky always had o2 sats in the upper 90's also. Post op she is consistently 100... also... Ky's weight PRE surgery... was barely 10 lb. In less than 6 mo ... she gained 5 lb! So get ready! LOL It was truly amazing!

    I am praying for your heart and mind also... I know that the week leading up to Ky's 1st OHS was definitely one of the MOST trying of my life.

  5. Crystal...I will continue to pray for Bentley. I'll also be praying for strength for you too! So glad that her oxygen levels were so high! That's amazing! Hope you have a great week. We are getting excited about getting our Bentley bracelets. I'll be sure to take a picture or do a post when we receive them. Talk to you later!

  6. Thats all it is, a dark cloud following behind. Keep your eye on God and the positives and that dark cloud will not be able to catch up with you. And even if it seems or feels like maybe that cloud has caught up with you.... it still hasn't, as long as you her HIS plan in all of this and every new day you still wake up to a beautiful TINY Bentley girl.

    Way to show off GOD...and BENTLEY! Keep them all guessing!! We know how is in control.

  7. We are all praying for her!!! I will help anyway I can. I ordered one of those lamp things from Britt yesterday bc she said 20% would go straight to Bently! Ya'lls family truly touches my heart

  8. I will keep you and Bentley in my prayers... Pray for a safe surgery.. a sick free lil girl going into surgery and healed heart coming out:) Always praying for you and it is always ok to post a gloomy post.. we are here to make you feel better and be friends:)

  9. I don't know you, but Bentley's story touched my heart. I pray that her cold (or whatever it is) is very short-lived so that you don't have to reschedule the surgery. I cannot begin to imagine what waiting for that surgery day is like, much less to have it pushed back 6 weeks. I hope and pray that all goes well.

    By the way, if it makes you feel even a tinier bit better, my 10-month old only weighs 11.5 lbs and still can't sit up or pull herself up. So Bentley is doing great, I think, and will only be better after her little heart gets fixed.

  10. just wanted to say that I will be praying for Bentley's runny nose & for the surgery to go perfect... And asking the Lord to comfort you though everything:)


  11. I LOVE that she is proving the Drs wrong!! She is proving to you that she can do this and beat ALL the odds!! Bentley is going to do fine with her surgery. We're praying for you!!

  12. We are praying for sweet Bentley. Constantly asking Him to give her strength and to keep her healthy.

    We love you Bentley!


  13. Just to make you feel a liitle better about her weight I have a 7 and a half month old that weighs 13 pouns 1 ounce. She's perfectly healthy so tiny can happen anytime. I know what you're going through is way hard just trying to help a little. By the way we have the same walker!!

  14. Praying for the runny nose to clear up quickly! Such an amazing little girl you have..she's beaten all the odds! Adorable!


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