The hospital set us up for an appointment to see a pediatric cardiologist about an hour and half away because there are not any here where we live. We had so many emotions and still do. Neither of us know anyone with any kind of heart defect. We did learn this is something that just happens.. there is no reason for it. In fact, 1 out of about every 100 babies will be born with some type of heart defect. At this appointment we learned more about Tetralogy of Fallot (TOF) and the way it works. There are 4 key features of TOF. He began to tell us how blessed we are because Bentley has such a mild case of TOF. Most babies with this defect have many symtoms such as low oxygen, slow weight gain, heavy fast paced breathing, turn blue (tet spells), and a few more. We are so very grateful that Bentley has none of the above. Everything about this girl is healthier than most "heart healthy" babies. It is absolutley unbelievable. They generally like to do the repair (surgery) around 6 months of age as long as the child is healthy enough to wait. He did warn us he thinks she would be just fine waiting for the 6 month mark.. but she will get worse as she grows so be on the lookout... all babies get sicker with this. So we can/could expect for symptoms to start. I am so very blessed to say that she is now 5 months old and has still to this day.. she has not had any symptoms. Her pediatrician is blown away by how well she is doing. There is no reason to believe that there is any problem other than the picture of the defect. After that appointment we decided to get a second opinion. So two days later we went an hour and half the other direction to another pediatric cardiologist. He did another echo and he feels the same as the first Dr. We decided to stick with this location for the surgery and all up coming Dr. appointments. From the beginning we were expecting to be seen by the pedi cardiologist every 4 weeks, but again because of her doing so well, she has only been seen every 8 weeks! GO BENTLEY! She is such a little fighter and has been since she was in my tummy... so watch out boys! In Dember they scheduled her for surgery on Jan. 27, 2009. Yes, her surgery was suppose to be yesterday. But another door has openned for us.. since day one someone has mentioned a great surgeon in another location.. about 4 hours away. I have searched this surgeon day and night as well as every other surgeon in the state of Texas and every where else. I have spent endless hours researching finding out anything and everything I can. I have to say I was completely blown away from everything I found on this Dr. I was told about. His accomplishments were never ending.. God does AMAZING things through this surgeons hands and I knew we had to meet him. So yes.. I did it again.. we went for a third opinion and God led us this way for a reason. We went to this appointment on Jan. 16, 2009. I felt that since she is doing so well we had the perfect opportunity to find someone WE wanted, not just who we were led too from the hospital. Jan. 16 was a great day.. our trip to the new Dr. could not have been more perfect. Yes, I said NEW Dr. We made the change again. I am extremely happy we did so. Ryan and I fell in love with the Hospital and everyone invlolved. There is so much to tell so I will post that visit in a couple of days.
We are asking you to please pray for Bentley. There is not a day that goes by that I do not pray for a miracle, I pray that God will heal my baby girls heart himself so she does not have to go through with surgery. We have felt just about every emotion possible since we have found out about Bentley's heart. Words just can't describe. We are doing a lot better with time, but the fact still remains that our baby girl is going to have open heart surgery and every time I think about it, my heart aches. Badly! Going through this has turned me to God like never before. I know he loves Bentley and he is protecting her but it's still very painful for us to experience. I have faith that he will heal my baby girls heart and I will not stop praying for this miracle. I know that he WILL perform a miracle on my baby girl. If he does not heal her heart with his own hands he will be doing it through the surgeons hands. He blesses us all everyday. GOD IS GOOD!I did forget to mention what is expected after the surgery. This heart defect or repair will not affect her in any way. She is just like her brother, sister, and any other child. She will be able to play sports, ride rollercoaster, and all the crazy things that come in the teenage years. This is not going to hold her back. I just want to share one thing the first Dr. said.. He told us she will be able to play sports.... "as long as she's good enough". Yes, he was trying to make us laugh and it worked. But boy that man does not know her brother and sister. ha. She's got the sports thing in the bag!
I will be posting all updates on Bentley here, even when we are in the hospital. Again, please keep Bentley in your prayers.
If you are just now reading about Bentley, you can click here to read how her next amazing cardiologist and surgeon consult went.