Tuesday, February 24, 2009


so serious..

So we went to our 6 month well check up yesterday and learned we would be experiencing something new. But first the pediatrician was amazed with Bentley, she is doing so well. Bentley is 12.8 pounds which is a little small but still good. Heart babies are usually a little smaller before the surgery because their heart has to work harder so they burn calories quicker. But she has amazing growth.. height and weight. So that is a good thing. I would still like to fatten' her up a bit before surgery. Bentley's oxygen was 97% which is an absolute BLESSING! 100% is completely normal.. so anything high 90's is pretty much normal. We just don't want it to get to the 80's. We were hoping to hear some change on the formula because her current formula is much higher than the norm.. it's unbelievable. Insurance will cover this in most cases however they refused Bentley's. They told me they will cover it if she needed the one formula to survive.. she does. We then tried to fight it and had her pediatrician contact them of the importance of her needing this ONE formula and they still refused. Then they said because this is not a genetic disease then they will not. I just don't get it. We ended up just leaving it alone, dealing with so many emotions that was just one more thing to add to the list. On the positive side, since she will now be starting baby food she should be drinking a little less formula. The new thing.. her pediatrician informed me that she is going to refer her to a physical therapist for motor skills. She says Bentley is on track now, but she would like her to be ready for the surgery. Once surgery comes there could be a short delay in her walking, etc just from the recovery time. This came as a shock to me as we have never discussed this before. I honestly don't mind if it takes her longer to walk I just want her to be healthy. But it is nice to see the pediatrician is going out of her way for Bentley. She is so attached to Bentley and I love that! So that pretty much sums it all up. Bentley is still doing amazing. I am so thankful for this. Please keep the prayers coming. We are going to have to come face to face with this soon and see our baby go through open heart surgery. It breaks my heart!

She is laughing and crying at the same time.

Thank you so much for all your prayers. I cannot tell you enough how much it means to us!


  1. It is so hard to look at your perfect baby and think that she has this heart disease, isn't it? Sounds like she is doing wonderful though! 97% oxygen is amazing! Madi was in the 70's. Enjoy your little cutie!

  2. It really is hard to believe. You never think anything like this will happen to you. Both sides of family 100% healthy then out of no where we were the chosen ones. At the beginning I was an emotional mess, God has since given me strength and I feel much better, but honestly.. the sooner it gets here I am scared I am going to fall apart again. I just keep telling myself that she is going to NEED me so I have to be strong and not let her see me down. And praying.

    I do not like to see anyone go through things like this, but when others do it's nice to see such a positive outlook like yours and Madi's. It really lifts a little weight off my shoulders. It's such a scary thing and to see so many little ones with this come out so strong and healthy, it's just amazing! It is proof that God is protecting our babies.

    Glad I found you. You have once felt everything I feel now. God Bless you!

  3. Hi Crystal,

    My name is Michelle, i'm a TOF mommy too. I came across your blog by accident, but i'm so happy that I did! I too have a girl with a "mild" case of TOF. Madison (Maddie) is now 2.5 and is 5 days away from her 2 year post op anniversary! ) I know it always makes me feel better to hear about a child who is a little older living with the same condition, so I felt compelled to say hello and invite you to read our story!
    I am very thankful I found your blog, I hope to hear from you soon!

  4. Hi Crystal,

    She certainly is a trooper... and you are so blessed to have found a pediatrician that cares so greatly for her.

    The day is coming soon, but all will be well afterwards. My continued prayers are with you and your beautiful daughter.


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