Tuesday, January 27, 2009


Five months ago I gave birth to our second daughter Bentley. She was perfect in every way. The labor was quick and easy, it couldn't have been more perfect. Once she was born they did a quick exam on Miss Bentley as they do all newborns and all was well, we moved to our room. For the third time in our life we were blessed with another amazing child. We couldn't have been happier! On day two when the Dr. came to the room to do another routine exam, he noticed a heart murmur.. I was not alarmed.. I know there are many many people with heart murmurs and still have normal hearts. So we stayed positive. I mean really.. these things happen but not ever to us or anyone we know. That was my exact thought. They decided to do an echo (ultrasound) on the heart. Once she returned an adult cardiologist read the echo and informed us it looks as if she has a particular heart defect that will require open heart surgery. Are you kidding me! My heart broke into a million pieces as did Ryan's. He said they were sending her echo to a pediatric cardiologist for him to read to be sure and proceed from there. We had to sit and wait for about 5 hours. During all this, they took Bentley to NICU so they could monitor her. I have never felt so helpless in my life. We were just told our baby girl would be having open heart surgery (in the future) and then they take her away for hours. There was nothing Ryan and I could do but sit and cry. Finally the Dr. came back in and told us Bentley has a heart defect that is called Tetralogy of Fallot and she will need open heart surgery to repair the defect, the surgery usually takes place about 6 months of age. She went into detail about the defect, but I couldn't hear a word. All I could think about was my baby and open heart surgery, I never would have thought I would hear that together in the same sentance. The rest of that conversation was a blur. Thank God for Ryan (my rock)! He stood strong and listened to everything. About this time they returned Bentley back to us to tell us that she has been doing wonderful and has not had any problems or symptoms. So she was well enough to come back and be with her mommy and daddy. We were discharged from the hospital on day 3.. Cardiologist appointments began instantly.

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.



  1. I love the fact that you are doing this. The page is awesome and of course my lil niece is adorable!! I think that this is a really good thing that you are doing to help out not only yall but everyone else. (including me)I really look forward to keeping up with it. And of course my prayers are always with yall. Love yall

  2. Just wanted to stop by and encourage you in joining us for Think Thin Thursdays! There is a small group of women who are involved and are very motivating! Thanks for checkin gout my blog and I will for sure have your baby girl in my prayers. Good Luck with your nee Doctor and hopefully this will be the open door God left for you guys! Happy blogging- LeAnna

  3. Crystal, I'm so sorry to hear about Bentely's condition. I will most definitely be praying for her, and post the URL box in my blog. Nothing is more assuring than His people coming together in His precious name to ask for a miracle. And His love for us, of course.

    Blessings to you, peace to you and your family, and may the Lord show you favor and make Himself known.

  4. Thank you for sharing your story. I found your blog thru Kelly's Korner... reading about Harper.

    They took my son the second day of his birth because he had an infection. He too was taken to the NICU and I had to leave without my baby. While Andrew did not have any surgery or long term effects from the bacteria, as a mom ( a new mom for me, at the time ) It's heart wrenching to not know... you think the worst. Andrew was discharged 12 days later as healthy as can be, and I will keep you in my prayers that your little cutie pie continues to thrive. =)

  5. I too found your blog thru Kelly's Korner and will now have Bentley in my nightly prayers. I hope for nothing but the best for Bentley. She is absolutely beautiful and I can't wait to read more about your little miracle baby.

  6. I don't know you, but I have three children myself and I know I would want anyone and everyone praying for mine. Just wanted to let you know that I'm praying for you and your daughter!!

  7. I just now learned about your family and all the trials you have recently endured and enduring. My thoughts and prayers are with you!! God Bless YOU...

  8. I found your blog through Kelly's blog and just wanted to let you know that we are lifting you up in prayer from Kentucky. My daughter faced two open heart surgeries (one planned and one emergency less than two weeks after the first) and now she is happy healthy and her heart is the least of our concerns. Last week was her TWO YEAR Heart anniversary. I know that in two years from Bentley's May surgery you will look back as I do... thankful and grateful for a God that is so wise and generous!

    Hugs and prayers,

  9. Hi I found you through my friend Danielle "Learning to love every moment"....

    I remember coming across your blog one before..... I am praying for you girl.

    My little girl is 11 months, they said she has a heart murmur also, and we had her ECO done at 1 week old. The doctor still hears it and we go back for another ECO next month to see if they feel its changed, getting better, getting worse or innocent and nothing more to worry about.

    I know the feelings and emotions you have been going through. I started crying reading this post because no matter what, at the end of the day it is still YOUR sweet little baby girl going through such a BIG WORLD procedure. OUR GOD IS BIG.... and HE HAS A PLAN and with no "buts" suppose to follow.... it still doesn't mean we as parents can't be human and emotional and frightened and heartbroken and scare for our little ones.

    Ill be praying all goes well. Please keep us in your prayer next month as we go and have Morgans heart looked at again.

    God Bless.

  10. My son Josiah has TOF and is scheduled for surgury at 3 months old, this week. We are praying for GOD to heal him. I will remember Bentley in our prayers.

  11. My cousin had this when she was born. She had the open heart surgery and everything went well. She is now an 18 year old, healthy teenager! I am praying that they same goes for Bentley:)

  12. Crystal,
    Thank you for sharing your story. I am praying for your little girl and your family during this difficult time. I know that God's hands of mercy and love are wrapped around all of you. I work in a NICU and pray that you have a supportive medical team (it sounds as if you do) that will give your precious little girl the best care possible. God bless you and your family.


  14. praying for your girl

  15. my neice was born with TOF amongst other heart defects. she also had her surgeries by a great surgeon in Texas. I am curious about the surgeon Bentley is seeing?? I will be praying for your sweet little girl.


  16. My mom works with Bentley's grandmother.I think Bentley is just 2 adorable! I feel awful that she has to go through this.I will pray for her!

  17. I think this is wonderful how you guys are helping this family out! I will keep your daughter in my prayers. I'm sure you are having a really hard time dealing with everything right now. Keep your faith- it will pull your family through. My daughter just turned a year old at the end of April. She had openheart surgery too. She was two days old when she had to have it. She pulled through and is still improving everyday. In the future she might have to have one more surgery. I know how you and your family are feeling! Keep thinking positive and keep praying! God will pull you and your precious angel through this time. There is a heart group I belong to if you are interested.

    Who is the doctor that is going to work on her heart?

    God Bless!
    Jessica Roan

  18. I will be praying for her! I know god will be with your family through your hardships.
    And the BENTLEY bracelets are so cute

    GOD BLSS!!!

  19. My nephew was born at 18 weeks the doctors told my niece he would not live but she never gave up on him he is now 3 years old has had several surgerys but today he can smile,kiss and knows who you are. So I know prayers do work the more the better so you keep the hope and prayers going baby Bentley will be okay, God is in control I will be praying for you.

    God Bless!!!!

    Vilma I

  20. May God bless this little one with a full healing! Thank you for sharing Bentleys story and your faith! I will be in prayer!

  21. I love that you started this blog. On November 12 2007 my daughter was born with a heart defect called VSD ( Ventricular Septal Defect). She is now 20 months old and we are still waiting to see if surgery is going to be needed, which is of course open heart surgery. Like you, there is not a day that goes by that I don't pray that she will not have to go through the surgery. I know what you and your family are going through, you have the perfect little angel come into the world and for someone to tell you there is something wrong with them rips your heart out! I will continue to follow your blog everyday and keep your angel in my prayers with my angel!

    Good Luck!

  22. Bentley is so cute.

  23. Hi Crystal,

    It's me Sarah again. You had left a comment on my site that you create blogs and webstites. Well I wanted to read up on Benley's story days back but things got in the way, so I just did tonight.

    I can't imagine open heart surgery on an infant but I've read many blogs that have had similar heartbreaks, which in turn breaks my heart. I also had a scary birth, not quite as scary as your daughters, but my first dauther was born in my 27th week of pregnancy weighing in at 1 lb. 9. oz. She stayed in the NICU for 3 looong months and every day, sometimes two and three times we drove to the hospital to pray over her and sit with her letting her hear her momma and daddy's voice.

    It's so hard when, as a mom just giving birth, you watch as all the other moms are wheeled out with their newborns in hand while you also just gave birth and leave empty handed.

    It takes a strong woman/mom/parents to endure that! And it seems as the two of you were strong. Just keep looking UP to God for a miracle and praising Him for strength to keep you going and the love that I'm sure you bestowing upon your precious angel.

    I'll be praying for you Bentley and your family most definitely.

    ~Sarah Cecilia

  24. To my dear Bentley,
    Dont worry u'l jus be fine... my prayers are with you. My baby too was detected with the same problem but never ever had a symptom... We can hope and pray that God will correct your problems n you both will never need a surgery

  25. Dear Crystal

    I'm so sorry to hear about Bentley's condition. However, when there is a hope from doctors, there will be a cure. Don't worry but keep on praying and enjoy every minute with her as she grows.She will be a healthy girl once again.

    I envy you and Ryan and Bentley very much. How I wished my baby Mae if she could only suffer from heart problem (there is a cure for that) as Bentley rather than leukaemia. My doctors told me her chance to survive/cure was ZERO. That moment was like END OF THE WORLD to me. There was a time when I attempted to kill myself for I couldn't live to witness her suffering and departure. Never a day passes without missing her. I wish God could give me an answer when I meet Him one day...WHY? GOD!

    Mama of Mae

  26. Hi Crystal,

    Stumbled across your website while doing some research. I just want to ease your mind if I can. I was born with Tetralogy of Fallot and had my first open heart surgery at age 3. I was cyanotic and had a leaky valve and it affected my regular, daily habits. I am currently 26 years old and still awaiting my second surgery to repair the leaky valve. I was told I would need it at 13 and have been proving them wrong ever since. It affects me more than your daughter as I can not really play sports (and I am definitely not good enough!) but I just wanted you to know that there was someone out there who has what your daughter has and has made it this far, with hope and confidence of going much further.
    I feel as though God is on your side in this. I will pray for your daughter.
    Take care,
    Elizabeth from Toronto, Canada



  28. I want to thank the blogger very much not only for this post but also for his all previous efforts. I found www.youandmeplusthree.com to be very interesting. I will be coming back to www.youandmeplusthree.com for more information.

  29. My name is Jennifer Robins I was browsing internet and found your blog. The author did a great job. I will subscribe to your RSS feeds. Thank you for your contribution. I am a web designer myself. And here some examples of the websites that I designed for loans payday loans company.

  30. My little Asher was born April of 2010 with TOF with severe pulmonary atresia and MAPCA's. (very complex form of TOF, we were not as lucky as you!). However, we were diagnosed pre-natally. He had his first open heart surgery at 4 weeks old, and we are headed to Stanford in October for a complete repair. Cute blog- mine is super brand new, but you can check it out. ashershopefulheart.blogspot.com

    So glad your little girl is doing so well now!


Related Posts with Thumbnails