HAPPY APPT. DAY

(Bentley watching the fish at Texas Childrens Hospital, she loved them!!)

We took a 1 day road trip to Bentley's cardiologist appointment yesterday. When we left the house it was 43degrees here once we got to TCH (Texas Children's Hospital) it was almost 80degrees (still in 40's at home). I'm sure everyone in Houston got a good laugh seeing us dressed in layers for winter. Other than the long drive with a super busy (almost) 16 month old and rain and fog... we had an amazing day. Bentley's cardiologist appointment was GREAT. It actually, couldn't have gone any better. We recently switched cardiologist (same office only different Dr.) and yesterday was our first time to meet him. I do not have enough positive words to express how much we like him. We are blown away with his knowledge and personality. He was great, and Bentley LOVED him. Bentley is such a social butterfly for a 15 month old. She loves people... but for our last few appointments she has given the nurses and Dr. a really hard time. She kicks and screams and puts up one big fight to get them away. But not with our new cardiologist. She was a little unsure at first but as he talked to her and played with her she really openned up to him and played with him and talked to him. Oh how I love this!! It makes the visit go a lot easier (less stress). Now the important part... she is doing GREAT, she had a wonderful report. Only good news!!! Yeahhh!!! Go Bentley!!! We couldn't be happier right now. PRAISE GOD!!! He is sooo good!!! We will go back in 6 months for another check up.

If you are wondering why we have switched doctors, there is no reason other than personal preference. We have learned that it is EXTREMELY important for the doctor and patient/parents have a great connection. It HAS to be there or there will be many more questions which means more stress during an already difficult time. Our last cardiologist was GREAT, we did love him... and he definitely knows his stuff. He's awesome. With that said, everyone is different. There has to be that connection there and it wasn't with us. I know he is perfect for so many others out there.. just not us. So after more research and a few long conversations with my sweet friend Shelli (fellow heart mom, her son also had surgery at TCH) we decided to give their cardiologist a try (same office). We instantly clicked and knew he would be the perfect one. I am by no means bashing our old cardi, he is amazing and has been so good to us, otherwise we wouldn't have went to him for as long as we have. We just needed that "connection". We will be seeing cardiologist regularly forever. It is important to find one that WE connect well with and stick with them. And I think we have found that!!!

I hope you all are enjoying your Holidays!! I can't get enough of the Christmas "feeling". It has been unusually cold here (you love it when it's hot year 'round), the Christmas music playing on the radio, Christmas movies on tv to watch with the kids, Chirstmas tree that lights up the room, Christmas parades, EVERYTHING!!!! It's just such a cozy feeling. I am looking forward to spending time with family as well!!

Hope you all are enjoying the Holidays!!!

THE DETAILS - HEAD NOT HEART

I have been trying to post about this for a couple of days now but finally got a minute to do so. The major surgery that Bentley could possibly face is on her skull NOT her heart. I know some of you know the details but many of you do not... so everyone has assumed it was her heart which is understandable. I guess this is why I have had such a hard time dealing with the possibility of this condition and the road it might lead us down. Don't get me wrong I would also be terribly crushed if there was something going on with her heart but this is a whole new condition. 2 instead of 1.. both completely different and not related. That is a lot to sink in. I have had all the same feelings and emotions as I did with her heart which is why I did not want to talk about any details... I think us moms sort of go through this phase.. if we don't talk about it or speak the words, then it's not true or will not happen (denial). Or that's how I have always felt anyway... even with Bentley's heart which is probably why I never mentioned anything about it until she was almost 5 months old.

Last month I noticed a bump on Bentley's head.. for no reason at all. It is not just a regular bump, it is a raised area that goes from her soft spot down to her forehead.. in a straight line. It is not huge but it is there enough to alarm us. So I took Bentley to her pedi's office to have it checked out. Her pedi was not in so we saw another in the office. He felt it, and instantly thought it was Craniosynostosis... this is a condition where the skull is not growing correctly. Our skulls are made up of several bones, not all connected at first.. Craniosunostosis is basically where the bones close or fuse together before they should so the brain is not able to grow as it should. The only way to treat this is a major surgery on the skull. As you can imagine this is a huge surgery and very serious. The pedi decided to do an xray to confirm his suspicions... a few days later the xray came back normal!!! Thank GOD!!! We were an absolute mess and we were so happy to have normal results so we could move on past this. A couple of weeks later Bentley had her 15 month well checkup... we were seen by her normal pedi so I mentioned everything to her to ask her thoughts on everything. Because the fact still remains that this bump IS there. Her pedi felt it and she instantly agreed... Craniosyntosis... she implied that the xray has to be wrong so she ordered a CT Scan for confirmation. She went on to tell us more about the surgery needed, etc. We just thought we were a mess before... after 2 pedi's telling us this information and feeling so strongly about it we were a huge mess at this point. We had to wait days to have the CT Scan because of Thanksgiving and a few more for results. The wait has got to be one of the worse parts... the unknown... it's such an awful feeling thinking your child has a medical condition and not even knowing a whole lot about the specific condition. I now know the basics of Craniosyntosis but I'm still clueless about it. Just the thought of another major surgery makes me cringe. This past month has been a HUGE emotional roller coaster to say the least.

We were told we would have to wait 3-4 days for the CT Scan results. Not easy. A sweet blog reader of mine (Wendy) emailed me yesterday informing me that she works in radiology and it takes about 24 hours for CT Scan results to come back... so the rest of that time has to be pretty much waiting on the Dr. office to get and give results. 3 days for that is too long for me, she suggested I call them that they should have results. I called once in the morning and once in the afternoon just before they closed. A nurse finally called me after closing informing me she tracked the results down. Everything looks GOOD!!! THANK GOD!!!! She said they are close (not closed) but there is plenty room for growing which is what the main problem is with Craniosyntosis. My jaw dropped, I was convinced she had this condition... I was instantly bouncing off the walls, Ryan and me both!!! We were and are SOOO relieved!!! She said they will watch it closely at our future appointments but there is no reason to see a neurologist at this point. PRAISE GOD!!!!!

Thank you all sooooo much for your prayers, support, positive thoughts, EVERYTHING!!! There is no fear like thinking your child has a serious medical condition. (or having a child with one) It is plain flat SCARY and there is no other way to describe it. We are so grateful for you all!!!!!

Oh, and the bump or raised area that is there... it's called ridging. Apparently, it is the shape of the bone. I am really not familiar with ridging at all. But we were told there is nothing to worry about, everything is okay. And we couldn't be happier!!!!

Here is more information on Craniosyntosis.

RECIPE HELP!!!

I am in need of a good recipe for Thanksgiving. We are going to my grandparents for lunch and Ryan's parents for dinner. I usually take something different every year, so I have nothing in mind. We are just days away and I am clueless... OOPS!!!

What are some of your favorite Thanksgiving recipes?

Also, Bentley goes to her 15 month well check up in the morning. I am always anxious for her doctor appointments. Her next cardi appointment is soon approaching... next month. I am really anxious for this one since we will be seeing her new cardiologist for the first time. I have heard such amazing things about him, we can't wait to meet him!!!

CONNECT WITH HEART FRIENDS

I started my blog when Bentley was 5 months old. I thought it would be easier to keep family and friends updated on her heart and surgery. At that time, I had a very hard time verbally talking about her heart (love talking about it now, I probably drive people nuts!), so I found it easier to write and everyone could stay updated at the same time. When Bentley was a day old we were informed she had Tetralogy of Fallot (read the beginning of her story here), this was a shock to us. I had a hard time as any parent does. Once I started my blog, I was overwhelmed with the outreach of my fellow Christian bloggers.. that I did not know existed at the time. They lifted me each and every day and helped me in so many ways. I am so blessed to have each and everyone of them in my life during that time (and now), and even all my new readers now. For the first few months I searched the internet day and night in hopes to find similar situations. I have learned that all heart babies are completely different, but it did help me to read other real life stories. It gave me an idea of what to expect, as well as gave me hope for a brighter future for my child. Words can't describe how scary it is to find out your child has a heart condition.. you feel alone, scared, sad, mad, clueless, blessed (it could be worse), guilty (wondering if it was my fault, what I did wrong), and even out of reach... our job as parents are to protect our children and when you are going through something like this.. it is out of our hands, we have no control.. we have to hand it over to God and let Him do the protecting. There are many support groups out the for parents going through this, but where I live there are none. So I turned to the internet and searched. I have connected with so many heart parents, and I cannot tell you how grateful I am for that. I have a special connection with each one, knowing just a bit of what they go through. I ask them questions, they ask me questions, I have vented to them, and they have vented to me. We have become great friends and it is nice to "know" these other parents so we do not feel so alone. So for this reason, I have decided to set this page up of heart friends. Each of the children below have a CHD, you can click their picture to be directed to their blogs so you can read more about their experience and how they are doing now. Don't be shy, comment, email... it's great to connect and support! And if anything else, these children/adults could always use a special prayer. They are such strong fighters and go through so much in their lives. CHD is a life long journey...

Maddie-

Hypoplastic Right Heart, Pulmonary Atresia w/IVS, Ebstein's Anomaly

Blog

Carla-

HLHS

Blog

Derrick-

single ventricle, Dextrocardia, Mitral Atresia, Transposition of the Great Arteries, and Pulmonary Stenosis

Blog

Maccoy

Tetralogy of Fallot

Blog

Madison-

Tetralogy of Fallot

Blog

Alex

born in 1991 with Single Ventricle, Pulmonary Stenosis, and Transposition of Great Vessels

She is now a freshman in college at Millikin University.

Dylan

Tetralogy of Fallot

Blog

Erin (Age: 25)

Atrial Septal Defect

Blog

Zach

Single Ventricle (Double Inlet Left Ventricle), TGA, and Pulmonary Stenosis

Blog

If there is someone you would like to add, please email me at crystal525@live.com

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!!!

HEART MOMMIES & DADDIES

I have always received many emails from other moms that are going through what I am and have with Bentley.. and dad's too! But more so now than ever.. many of them have just found out such heartbreaking news and are turning to the Internet for research, just as I did.. for hours and hours at a time.. and through the wee hours of the night. These mom's are coming across my blog in the search engine while searching site after site looking for success stories and just a little something that will give them hope, and for so many more reasons.. again just like I did. Many of these moms do not have blogs so they will leave a comment but there is no way I can reply back because I have no return blog or no email address. I really want to reach out to these moms, it is one thing that helped give me hope when I was searching. Also, many of these mom's are not familiar with blogger and the post of mine that usually pops up when they are searching is one of my first few post ever talking about the whole story of how we found out and how torn we were, and they all relate to the way I felt and they tell me it's as if they were looking into a mirror. BUT there are a lot of people not familiar with the way a blog works, so these sweet moms & dads are not aware that Bentley has already had her surgery and she is doing amazing. I want these people to know this because it is "one" thing I continuously searched for. I also want them to know it is okay to email me and ask questions. No heart child is alike, but it sure is nice to have support. I had so many questions and talked to several different "heart moms" in the past and STILL do. So I have decided to add a navigation bar to my blog.. that way they can search around right off and do not have to mess with the archives.

If you have not read my first few post, I can tell you right now.. I had a really hard time with the fact that Bentley had a heart condition and was going to have open heart surgery. I kept it inside for months, we never told anyone.. I did not even tell my own sisters because I literally could not "speak" the words. I did not want to believe what we were going through. Which is crazy because I am so open about it now. Very proud of Bentley!! I could go on and on, but.. one night while I was listening to a Christian radio station, they started talking about "sick" children. And I learned that sometimes when things like this happen, it is because God wants us to reach out and help others. I have always been confused by that until after Bentley's surgery. I see it now.. and I do want to help and be there for others. I am so proud of Bentley, she is one amazingly strong little girl that absolutely melts my heart. God has blessed us in so many ways.. with Bryson, then Brenna, and then Bentley performing miracles one after another. He has really shown us and many others how powerful and amazing He is through our journey.

If you are a heart mom that has been reading, commented in the past, are new here, have questions, anything.. I am here! Just click the button up top to email. Also, I am still working on the navigation it is not all up and running yet but will be in the next few days. If there is something you feel I am leaving out, shoot me an email and I will see about adding it.

CONCERT BENEFIT - KAYLA RABORN

We had an amazing time this weekend at Bentley's benefit. Kayla Raborn and her family are so thoughtful to do this for our family. It was all somewhat a shock to us and we did not know anything about it until just a week before while walking into a store only to see a flyer on the door. Kayla Raborn has such a beautiful voice. She is actually waiting on a call, in hopes to soon be on her way to Branson, Missouri to follow her dreams. Kayla's grandmother lives just a few houses down. We are so grateful for all they have done for us! Here are a few pictures.

above: Kayla Raborn and Bentley

above: and again... I just love Bentley here.. so curious.

above: Kayla in action

above: sisterly love

above: brother, sister, and friend

above: Brenna

above: My Grandmother and Brenna

above: and this would be one of my favorite pictures ever of Bentley!

We were outside at the concert and she was playing for a minute. Her hair is messy but I LOVE LOVE LOVE this picture of her. She is such a miracle.. we are so blessed.. again thank you so much for all of you that have supported our family and lifted us in prayer during the most difficult time of our life. Bentley's heart surgery was just 2 months ago, thinking back.. looking at pictures of the hospital stay, surgery, and the benefits... I can't help but to cry. This time they are tears of joy. She is doing so great. God blessed this little girl and our family.

LOLLI - LOLLI - LOLLI

Not much new going on, but Bentley has been so cute today. Brenna walks around saying "lolli - lolli-lolli-pop" Bentley now says.. "lolli-lolli-lolli" okay okay.. not perfectly but it is CLEAR she is trying to say that. It is the cutest thing ever. She has been in a great mood today, all smiles which isn't anything new, but she has just been silly. She does the funniest little things. Shortly before her bath and bed, the kids and I took her for a walk. She loves it, she just smiles. And for those of you that do not know Bentley in person.. this IS Bentley's smile. This is not a laugh or a scream, it is her SMILE.. and what a big one it is.

I tried forever to scan a picture of the person that will be singing at Bentley's benefit tomorrow (Saturday) but I could not get it to work. Her name is Kayla Raborn and her grandmother lives a few houses down. Their family is putting on an outside concert, bake sale, and more tomorrow night. I will be sure to post pictures of everything tomorrow or Sunday!

WATER FUN - UPDATED

UPDATED!!! Video of Bentley is up... Brenna says "what" right when it starts and Bryson is talking to me at the beginning. He had no idea I was recording. The house I grew up in is just on the other side of a pasture by our house. He saw people on tractors there when there is usually not.. so he started asking questions. ha. Then you hear my country self talking... please ignore our accents... (wink) You also will hear some beautiful nature if you listen closely. And I just love Bentley's smiles!!! YES, that is Bentley screaming during the video.

So Bentley LOVED her baby pool!!! But it wasn't all smiles at first. She fussed for a minute, I knew it was just new to her. So Bryson got in the pool with her. Do you see how small it is.. you can sort of tell in the pictures. Bryson squeezed in there to comfort her. Within minutes she started splashing non stop and smiling from ear to ear!! It was adorable... then Brenna wanted a turn..

The pool had a small spot water would shoot up from, but as you can see in the picture.. we are taking baby steps with it. ha! Her splashing is enough for now. For those of you that have asked. Her swim suit is from The Children's Place.. we love it. My best friend Brittany bought it for her. You can't see it too well.. but it is polka dots of course.. then has roses going across the chest.. then poofs out. It's too cute!!!

BENTLEY

Bentley wearing "the bow" of all bows... "The Bentley Bow"

... yes it is named after her. You can read the story behind it here. We have some pretty amazing people in our life. I know the photos look off.. not sure why, but the bow is pink and brown.

Bentley is doing great. She has been a little fussy lately, but I think that is what happens when you were told from day 1 that you must give her anything and everything she wants so she does not cry.. we did just that. She now has more restricitions because she is so mobile... and she does not like it a bit. When I say more restrictions.. I don't mean from her cardiologist.. just the restrictions that all 10 month olds have, you know... getting into and on top of things.

DOCTOR UPDATE

Isn't this shirt and bow adorable!! The shirt says "bentley" in zebra.. =) Our great blog friend Kristin (who came to visit us in the hospital just minutes before we were discharged :( so we didn't get to see her), she sent this, she has a great business and offers the cutest things!! Oh and even the packaging was adorable. Thank you Kristin we absolutely love it!!!

If you read a bit about Bentley yesterday, you will know that we had to make an unexpected trip to the Drs. office yesterday.. we were given no definite news, but also a little unexpected possible scary news. There is a spot on Bentley's incision that appears to be infected... so we called and were told to come in right away... Bentley's pediatrician was on vacation so she was seen by another pediatrician in the office. He seems to think it is either irritated or infected so he called in an antibiotic creme and he wants to follow up in a few days so he can see it and compare. We are praying that this creme will help. Now the scary part.. he repeatedly stressed that we must watch this extrememly close.. if there is any sign at all that this is getting worse and not better.. we have to go back to the dr. office right away... he said it could very well be MRSA (aka staph) that it is going around right now. Which is very scary to us... it can be fatal. So we can only hope and pray that this is not MRSA and the creme will help remove any infection that may be there. I guess, at the moment we can look on the bright side that he was not alarmed enough about this to take further action, it's just scary. This is also a little frustrating because we have taken such good care of the incision, because of Bentley's age.. she is contsantly drooling so since day 1 we have been taking all steps to keep the incision perfect and well protected.

Oh, and the girl IS gaining weight. She has gained 1 pound in just almost but not quite 3 weeks.. this is a lot for her. =)

Remember Shannon, she won a engraved tile from Engraved Uniques. Here is the one she picked out.. isn't great! I just love them. By the way, Kaye has Bentley's tile up on her site and it can be purchased at the link above.

LITTLE UPDATES

Not much time to post pictures right now.. just wanted to post a quick update since I have been slacking... these are all things I will post more about later tonight or tomorrow... I just don't have much time right now...

- Bentley will be making an unexpected trip to the pediatrician's office today.. part of her incision seems to be getting infected so she needs to be seen. Because her cardiologist and surgeon are too far, we will be going to her pediatrician and have her take a look. She will then determine if she can help us, or if we need to go to Houston to be seen by her surgeon.

- Bentley is gaining weight super fast (I think). She was last weighed at her pediatricians office a few days after we returned from Houston.. but I can really tell a difference holding her and the rolls are finally coming. I have some really cute pictures I want to share as soon hopefully tonight when I have time to upload them.

- Brenna has always had long hair.. ALWAYS!! Not anymore... it is now shoulder length. Hard to do, but very cute.. pictures coming soon.

- Bryson did wonderfully at his track meet this weekend.. pictures also coming soon.

I think that should do it for now.. just to catch you up a little. I will post more as soon as I get a minute.. but for now, we have to hurry and get ready for Dr. visit.

BENTLEY'S BENEFIT PICTURES

What can I say... we have the best friends (real life and blog), family, and community anyone could ask for! As you may have read before our best friends (Brittany and Justin) put a raffle benefit together for Bentley that took place on May 28.. just 1 week after Bentley's surgery. We are so grateful for all they have done for our family. I don't even have the words to express how much this has meant to us.. not only them.. but everyone.. our family, friends (real life and blog), and even community has helped in so many ways! Every one went above and beyond to donate items and help sell raffle tickets. We are abundantly blessed to have such wonderful amazing people in our lives. We wish we could have been there but we were still in Houston "living" in our hotel during this time.

I have been meaning to post about this for a while now, but had so many pictures I wanted to share and finally found the time to get it together.


Just some of the amazing people that supported us... yes, that whole table going all the way down was there for Bentley along with many others in other seating areas.

My wonderful mother in law...

My bestie Brittany and sweet neighbor Julie...

My other baby girl.. Brenna...

Miss Brenna again.. and Peyton's (Bryson's friend) grandparents who we have grown close to, they are so good to us.

My amazing mom...

Peyton and Brittany...

My niece Skyler and my baby boy Bryson...

Peyton's sweet grandmother...

Brittany's handsome little boy Casen...

My sister Michelle...

Katy helping out (Thank you Katy!)... and Presley (Brittany's beautiful little girl)...

Katy's husband and super cute little boy...

Justin, Julie, and Brittany...

Casen again...

There are so many more pictures for us to keep and cherish. Thank you again to all of you that have helped not just with the raffle but prayers and all!!! And thank you Brittany and Justin, we love you!!!

52huqegviw