SHOW US YOUR LIFE - HEART BABIES CONNECT

I am participating in "show us your life" over at Kelly's Korner. My subject is Babies Heart & Heart Surgery/Congenital Heart Defects (CHD). CHD is a heart defect that is present at birth. Here, many new heart moms are able to connect with other heart moms for support.

(my daughter - open heart surgery - May 2009)
My story short... I became a heart mom a year and a half ago. We had a very normal pregnancy... the day after I gave birth to my 3rd child we were told my daughter had a heart condition called Tetralogy of Fallot. It is a complex heart defect that is made up of 4 defects and requires open heart surgery for survival. It came completely unexpected, my husband and I were devastated as any parent would be... but I seem to have had an extra hard time dealing with it. I was a complete mess. I could not even tell anyone about it. I did not verbally speak it to anyone other than my husband until Bentley (my daughter) was 5 months old. I did not even tell my own sisters, I had my mom tell them along with close family. No one else knew about it. I did not tell my best friend until Bentley was a couple months old, and sadly I sent her an email to inform her. I was up every single night until 3 and 4 in the morning (for months) researching Bentley's heart condition just trying to find information to give me hope. I came across many repetitive websites, but hardly any that included real people telling their own stories. When you go through something like this, there is a big difference between informational websites and sites that include real stories told by real people with real experiences. I have heard the informational part time and time again, but I want to know real stories, I want to talk to moms who have been through this and ask them questions, I want to hear their experiences, etc. and I was having a hard time finding this. Overall, I was just distraught (as all parents are when learning your child has a serious medical condition)... Because it was hard for me to verbally speak the words I decided to start my blog to keep family and close friends updated when Bentley was 5 months old. It was hard, I just felt if I did not say the words the condition would go away...

(6 months after surgery)
A friend of mind ended up leading me to Kelly's blog at Kelly's Korner. She just had sweet Harper and she was going through a extremely difficult time with her in NICU, baby Harper was fighting for her life. I was inspired in so many ways by Kelly. Her strength amazed me, her faith amazed me. I learned I was really missing the Lord in my life. I talked to Kelly a few times about Bentley and she reminded me of what I already knew... He is there, and He will protect her. Kelly holds a special place in my heart and she will never know how much she has helped me. She helped completely turn my outlook around.

The more I would blog, the more new heart parents would comment or email asking the same questions I had, that I could never find. See, there are many (in person) CHD support groups out there, however.. there aren't any in my area. These support groups are amazing, but I was lacking that extra support from real people that went through similar things. I had no one I could call or email... so I would just search online. There are so many people out there like me.. I know because I hear from them every day. This IS my personal blog, but it has also turned into more than just that. I cannot tell you how many people google "baby heart surgery", "chd surgery", etc. and land on my blog. 99% of the time, these are new heart parents are looking for "real" stories and experiences just as I was. They find not just 1 here but many. Not only can they can click to read Bentley's heart journey from the links in my navigation bar up top, but they can also connect with other heart parents here. You can also see that link above in my navigation bar. So many of us are not looking for professional websites that inform specific details of the condition.. we have already heard/read these... they are all the exact same, we want to read something more REAL. Although each heart story is completely different, we just want to know what to expect and see for ourselves that our children do have a chance at a long a normal life. So I am no organization, this is my personal blog... but I do gladly support any heart parent that lands on my page and try to help them any way I can. And I think it's safe to say that anyone on the "more heart babies" link up above feels the same otherwise that would not have willing added themselves there.

A good addition to this post, is my very last post. Shaun White (2010 Olympic GOLD Medalist) was born with the exact same heart condition as my daughter Bentley. I actually just found this out yesterday. He truley has an inspirational story for any heart parent. You can read about that here.

HEART BABIES AND Q&A - UPDATED

* UPDATE - I am referring to anyone and everyone that has a CHD.. it does not have to be a baby or child. I would love to hear from and add adults as well!!! Please share this post with your heart mom friends.

I am working on a couple of changes for my blog. I currently have a "heart friends" area on the right sidebar. This list can go on and on.. I have really slacked with my blog lately and since I have been blogging more the past few days it reminds me of how much I miss it. So, I am updating a few different things. First, I will be updating my heart friends list.. but, because there really are so many that list could go on forever. So I have decided I will be adding a link over there that says heart friends, once you click there you will then see several heart babies. On this page, I would like to have a picture of the baby or child as well. And possibly what their heart condition is called. I think this will be a great way for heart moms to connect to other heart moms. I cannot tell you how many times before surgery that I have searched day and night for other heart moms.. just wanting to ask them questions and pray for their sweet children as well (and still do). Because not everyone has a prayer button, I am asking for a picture of your child, their name, and their heart condition. If you are a heart mom, you can email me at crystal525@live.com with those 3 things and I will get them added. If you are not a heart mom, but know one and would like to have them placed on this page.. please get with the heart mom you know and have them contact me. I rather not post pictures unless the mom or dad contacts me with their approval. I will update you all once I have this set up. Until then, feel free to start sending me this info!!!

I am working on a couple of other things and I will post updates on these as I get there.

Also, I have received so many questions since I have had my blog. I have never posted a question and answer post so I have decided, I will do just that. If you have any questions.. about anything at all (does not have to be heart related, or it can) email me at crystal525@live.com or leave a comment with your question. The most common question I get is, "How did you and your husband come up with Bentley's name" Good one, because it is so unique.. and I will tell you right now, definitely not because of the car. That car is not even in our vocabulary. Yes, they are nice.. but not something we would ever be able to afford.. therefore it does not even exist to us. I will answer that question in the Q&A post. I will wait probably a week or so before I do this so I can be sure to get all of your questions. Ask away!!!

PARALYZED

I never would have thought I would experience all that I have during the past 6 months. To make a long story short it has been full of FEAR. If you are new here, you can click here to read the beginning of Bentley's (my daughter) story. Fear definitely paralyzed me when I first found out about Bentley's heart condition. I do know that our God is a BIG GOD and a GOOD GOD and I put ALL my TRUST in HIM. But fear often gets a stronghold on me to know that the worse part of Bentley's heart experience has yet to come. I found this video on CrossPoint's website, and loved it!

Fear is something I think a lot of us battle.. how do you keep fear from taking over?

*** I have a lot for tomorrows post: Pictures, thank yous, and more!

FAMILY FUN DAY

So this morning we thought we would spend some family fun time out of town. This was totally random.. it is about a two hour drive and we never just up and go like this. But, this past week of Spring Break hasn't been the most exciting. All the rainy weather has left us couped up inside all week, no outside fun time, no practices, just not a lot going on. The rain has gone away but the puddles are still here.. so we thought we would just get out of town for the day. We didn't do much, but it was nice to just get away and spend time with each other and not think about things. With that said, we obviously did not think things through.. we ran into major traffic on the way there.. after all it is the end of Spring Break and people are on their way home from vacation. So our two hour drive there ended up taking about three and half hours. It was a smoother trip on the way home, no traffic whatsoever. We ended up getting home about 11:00pm last night and the kids were exhausted. We had an amazing time, I am so glad Ryan suggested it yesterday morning. I would like to do things like this more often but maybe a little more planned next time. ha.

(it was a very windy day, can you tell?)

Happy Birthday Casen and Presley! I have goodies for you and will bring them by soon! Big hugs & lots of love!

Also.. I have recently talked with another heart mommy with a different diagnosis.. and I am asking that you please keep Owen in your prayers. This is an amazing family that has touched my heart and they need our prayers as well.

6 MONTH CHECK UP

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!

PRAYERS FOR GRACIE

Gracie is in need of immediate prayers. To make a long story short, she had a heart transplant on February 22. They thought her body was rejecting her heart. They ran test and it came back negative which meant her body wasn't rejecting the heart (good news) but now they believe the new heart was bad (bad news). Things are just not going the way that they hoped for. At the moment, I believe they are just watching her to see how things play out, I believe they have re-listed her today for another heart. Gracie has been fighting a hard battle with CHD (congenital heart defect) since she was born. This family needs our prayers, Gracie needs our prayers!

On another note: Bentley's appointment went well today. We did find out something new that we will soon be experiencing that we were not aware of. I will give details on everything tomorrow.

"SOMETHING THE LORD MADE"

I'm in awe today as I have finally watched the movie called, Something The Lord Made. It is a true story about the very first open heart surgery that was performed in 1944. The worlds FIRST open heart surgery was performed on a baby that had Tetralogy of Fallot. WOW! What are the odds of this.. out of the many many heart conditions, it is the same heart condition Bentley has. And I have to say I really do not understand how CHD is not more known considering the history. There is amazing history behind open heart surgery that will interest several different people, not just people that are experiencing heart related issues. I would recommend this movie to anyone and everyone. It is by far my favorite movie. Take a look at the preview below.. if you have HBO, it is on HBO demand right now. You can watch it at no charge, if you do not have HBO, you can buy or rent it. I have heard about this movie since day 1, but I was scared to watch it. My husband and I finally got the courage to watch it last night.

I do need to mention since it is CHD awareness week. Considering the world's first open heart surgery was performed on a baby, why is it not more known? I just don't understand. When we hear open heart surgery, we immediately think adult. What about our babies. I totally support ALL heart awareness.. but children are often overlooked and short on funding for further research. With that said, I can tell you that they have came along way with open heart surgery since the beginning, there are ways they can go in now and do a repair on SOME defects without open heart surgery. Unfortunately, Tetralogy of Fallot is still open heart surgery. But most babies with TOF and other heart defects undergo several open heart surgeries. They are working to make these surgeries less invasive. How amazing is that! Bentley will possibly need more surgeries in the future, we will not know until after her first surgery. If she does it could be 5-10 years down the road and by then they might be able to do these in a different way, not open heart surgery. We need to get CHD out there and keep funding this organization so our babies can have a better future. So please help spread the word this week.. and if you get chance do watch "Something The Lord Made"!

PS.. on the video I posted last "LOOK AT YOU NOW", did you notice the baby named Mark towards the end, and it said he had Tetralogy of Fallot? Then at the very end, it showed Mark O'Shea (the guy singing the song)! I had tears this whole video, but to see how amazingly well he is now and then to announce he had TOF I just started bawling (Texas talk, I know) when he announced his TOF defect. He has lifted my spirits, that's for sure!

PSS.. BIG thank you to Dr. Alfred Blalock (surgeon), Vivien T. Thomas (African American surgical technician ), and Dr. Helen Taussig (female cardiologist) for all three getting together and making this surgery happen in 1944. God led these 3 people together to change the world.. and they did.

Many Blessings,
Crystal

CHD AWARENESS WEEK

It's in my life now and forever..

Join me today and lets spread the word about Congenital Heart Defects.. CHD Awareness Week is February 7-14. Congenital heart defects are problems with the heart’s structure that are present at birth. So these are precious babies born with heart defects/abnormalities. It is a very serious and life threatening issue. Many people do not know what CHD is.. or the extent of it. CHD is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. So why don't we know about it? Why don't we hear more? We need to spread the word and make CHD known so we can start funding more research and testing to learn more about the causes, prevention, and treatment.

I have two videos below that I would love for you to see, please take a minute to watch them. For starters the first video has an amazing song, absolutely amazing for any person that has a child. This video will show you a few facts and stories. It is a short video so it will not take long. I know these pictures are hard to look at, extremely hard, but these parents see their own children go through this everyday. Since I have known of Bentley's heart it took me at least 4 months before I could look at photos like these. I am so scared to see her like this my heart just aches more and more everyday. I just keep telling myself she needs her mommy to be strong for her... So I really have to hold it together. But this is a great short educational video.

The second video, oh you HAVE to check it out. It is a fun uplifting video made at a children's hospital. You will see before and after photos and (I cried the whole time)there was something at the end that made be burst into tears even more. In a good way, it lifted me up and gave me more hope! I'm not going to tell you what it is today, I will tomorrow. If you have followed Bentley's story you will probably catch it. But you have to check it out.

I cannot thank you enough for taking time out of your busy day to read and watch this information. There is so much more to know about CHD and I hope to share more with you throughout the week.

Blessings,
Crystal