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.

SAVIOR, PLEASE

I have tried to be tough for the past week, but the fact is I'm just not strong enough.

I have tried to cover the pain I have been feeling with a smile... but I can't any longer. I have written this post and deleted several times because I just can't find the words. So I will say this... we once again are in need of prayers. Bentley is in need of your prayers. This is about the same issue I mentioned a couple of weeks ago. I did not post about it but after seeing Bentley for her 15 month well check up her pedi strongly believes Bentley does have this condition and will need major surgery. She believes the xray is wrong, so she has ordered a CT scan for today. I did not want to say anything until we knew more, but I am not strong enough. I am asking for your prayers. I feel just as I did at the begining of Bentley's heart journey... full of hurtful emotions, my life once again has been turned upside down and I feel lost and find me crying myself to sleep at night. Bentley had her open heart surgery just 6 months ago, I am not ready to go through anything like this again, and I am definitely not ready for my child to go through this again. Bentley will be having her CT scan in hours, I am not sure when we will find out the results. I am scared to hear the results, so so so scared. I know God has a plan, the perfect plan... but just I pray that Bentley's CT scan shows normal results and confirms that she does not have this condition.

We did have an amazing Thanksgiving. Even though I have been feeling a great bit of pain there are so many things I am thankful and grateful for, nothing can take that away from me. I am so blessed with such an amazing husband, kids, and family. I am so thankful Bryson and Brenna are so healthy, I am so thankful Bentley has had such a positive heart journey and surgery recovery because many heart patients do not. I am so thankful to have Ryan in my life, he is my bestfriend and he is always ready and waiting to catch me when I fall. I am so blessed to have them in my life for so many more reasons. I am so thankful to have a roof over my head and food on our tables. The list goes on and on. Bentley has changed our outlook on life, we appreciate all that we have with every ounce in our hearts. We have had such a great time visiting our Kansas and Texas family this Thanksgiving. It was full of love and laughter and I cherish that. I will post more on Thanksgiving soon.

Oh and I am still giving the blog design away, hang tight and give me a few days. I will post the winner this week sometime.

Josh Wilson - Savior, Please

Savior, please take my hand
I work so hard, I live so fast
This life begins, and then it ends
And I do the best that I can, but I don't know how long I'll last


I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me

Savior, please help me stand
I fall so hard, I fade so fast
Will You begin right where I end
And be the God of all I am because You're all I have

Hallelujah
Everything You are to me
Is everything I'll ever need
And I am learning to believe
That I don't have to prove a thing
'Cause You're the one who's saving me

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

SICKLY

Today has been a long day.. it is the first "summer" day for our family. Bryson's last day of school was yesterday... but it hasn't been the most exciting. Bentley's cough and runny nose is not getting any better, in fact.. it has gotten worse.. a lot worse. It has even caused her to vomit a couple of times today.. poor baby. If it is not better by tomorrow we just might be making another trip to her Dr. office. It's not very often we see such a sad droopy face from Bentley... not that we ever want to feel sickly but we really don't while recovering from OHS (open heart surgery).

Bentley's appointment went well yesterday. It was pretty much to just let her pediatrician know how everything went and let her look at Bentley in case anything comes up she can compare to this appointment. As far as Bentley being "sick", pediatrician says.. lungs sound good, no fever, ears look beautiful, throat looks beautiful so she wants us to try to wait this out. See, since Bentley is still in recovery.. congestion meds will still be hard on her heart. But we of course have to watch this closely to make sure it does not turn into RSV or anything else. That could be critical. Good news is that Bentley still has no fever.. but the girl is miserable. She hurts and I hurt seeing her hurt. As far as the rest of the appointment.. amazing. Eveything looked good.. her pediatrician was in shock with how well everything went.. she said Bentley is defintely a MIRACLE baby. I do believe all babies are miracles, but we have seen God perform several on Bentley. We are so blessed!

There is not much else going on.. because Bentley is sick.. there is really not much we can do. Bryson's first city tourney game is tomorrow (Friday) so we are excited about that. Bentley will have to miss out.. either my mom or mother in law will be watching her at home while the rest of us go watch Bryson.

Oh and today the last piece of tape fell off Bentley's incision.. Not sure if I ever talked about it.. but there were little pieces of tape going down the incision.. we were suppose to leave them there until they fell off on their own. It looks good so far.. a little pink but it should take a few weeks before all that will be gone. I will post pictures of it soon.

Please add Abby Grace to your prayer list, she is being treated at the same hospital Bentley had heart surgery at just 2 weeks ago. I talked to her mom earlier tonight, and I can see that she needs to be lifted in prayer. I have been there I cannot tell you how many times.. just to know people were praying and still are.. have helped and still does in so many ways!

Please also add Dylon to your prayer list. He had open heart surgery today at the same hospital Bentley did. He did amazing!! Reading about his surgery brought back so many tears from what we went through just 2 weeks ago. Please pray for a quick and smooth recovery.

More catch up post coming soon.. and if you haven't entered the free give-a-way for a Bentley engraved tile, hurry and do so now.. I will be annoucing the winner tomorrow night.. so as long as it allows you to leave a comment you are welcome to enter. I will turn the comments off before I draw and announce. Click here to read more about it and enter! You do not have to have a blog to enter.. anyone can! I received Bentley's tile in the mail earlier this week and I absolutely LOVE it!! I will defintely be getting one for Bryson and Brenna. It looks amazing and makes the perfect keep sake for any occasion!!!

PRAYERS PLEASE

Our morning is full of packing for the surgery and last minute shopping.. around lunch time we will be on our way to Houston to donate blood. We are needing prayers for this... I have always been borderline anemic and hardly ever have high enough iron to donate. I have been able to donate twice out of the 5 times I have tried. Bentley and I are a match but my iron has to be good. Please pray that my iron is high enough.. of course I will be SO grateful for any blood that is given to her.. but at the same time I would like to be able to do this for her. We are not sure what Ryan's blood type is. He is also going to donate, if he is a match then she can also use his blood. If he is not a match, it will go to the blood bank for someone else. So please also pray that Ryan's blood is a match and can be used as well.

Sorry I have no time to upload pictures right now, I will post more soon. I hope to have a sweet video up before the surgery, so keep checking for that.

Last but not least.. thank you to ALL of you who shared where you live.. it was so AWESOME to read and get to know you all on a more personal level. I have visited each one of your blogs (if you have one) and loved reading so many different post. Keep the comments coming.. I will let you know on Sunday who will be receiving some of Bentley's bracelets.. if we reach 100 comments then I will send them to 3 different people.

... I will let you know how this trip goes when we get back. Thank you for the prayers!!!

BENTLEY - TETRALOGY OF FALLOT

This is a big step for me.. I have never posted exactly what Tetralogy of Fallot (TOF) is. It's still just very hard... As Bentley's surgery approaches, I feel myself slowly falling apart again. I am so thankful for all of you who are praying for Bentley, and lifting us up. It is working. I have also received many many emails from other people who either have or know someone that has TOF. I love hearing all of your amazing journeys and it does help give me so much more hope along with everyone’s prayers. At the same time, I am terrified. When you consult with the surgeon he informs you of all the risk, and honestly it is everything you don't want to hear.. and I mean EVERYTHING. He gives your percents of the chance of each of these things happening.. the feeling is indescribable. Just know that I am so thankful for all of you, and your prayers..

Here is a diagram of a normal heart and a heart with TOF, below that is detailed information explaining TOF, and below that are Bentley's details.

(click the picture to enlarge)

What It Is?
Tetralogy of Fallot occurs in about 5 out of every 10,000 babies. There is no known reason for this. It just happens. Tetralogy of Fallot has four key features.

* Large Ventricular Septal Defect (VSD) - A VSD is a hole in the part of the septum that separates the ventricles—the lower chambers of the heart. The hole allows oxygen‑rich blood to flow from the left ventricle into the right ventricle instead of flowing into the aorta, the main artery leading out to the body.

* Pulmonary Stenosis - This is a narrowing of the pulmonary valve and the passageway through which blood flows from the right ventricle to the pulmonary arteries. Normally, oxygen-poor blood from the right ventricle flows through the pulmonary valve into the pulmonary arteries and out to the lungs to pick up oxygen. In pulmonary stenosis, the heart has to work harder than normal to pump blood, and not enough blood can get to the lungs.

* Right Ventricular Hypertrophy - This is when the right ventricle thickens because the heart has to pump harder than it should to move blood through the narrowed pulmonary valve.

* Overriding Aorta - This is a defect in the location of the aorta. In a healthy heart, the aorta is attached to the left ventricle, allowing only oxygen-rich blood to go to the body. In tetralogy of Fallot, the aorta is between the left and right ventricles, directly over the VSD. As a result, oxygen‑poor blood from the right ventricle can flow directly into the aorta instead of into the pulmonary artery to the lungs.

Together, these four defects mean that not enough blood is able to reach the lungs to get oxygen, and oxygen-poor blood flows out to the body. So TOF does not mean the heart is failing, it really means the child is suffocating. Babies and children with Tetralogy of Fallot have episodes of cyanosis (si-a-NO-sis), which is a bluish tint to the skin, lips, and fingernails. Cyanosis occurs because the oxygen level in the blood is below normal. Babies and children can also have what are called TET spells or blue spells when their oxygen levels get too low and the child may quite breathing. Ever heard of a "blue baby" if so, this is what they were referring to. For this reason, the child must not get too upset, crying can easily bring on a tet spell. Tetralogy of Fallot must be repaired with open-heart surgery, either soon after birth or later in infancy.

Complete Repair:
To do a complete repair, the surgeon closes the ventricular septal defect with a patch and opens the right ventricular outflow tract by removing some thickened muscle below the pulmonary valve, repairing or removing the pulmonary valve and enlarging the peripheral pulmonary arteries that go to both lungs. Sometimes a tube is placed between the right ventricle and the pulmonary artery.

More surgeries?
After the first complete repair, residual problems may require you to have more open-heart surgeries. It is very common for there to be 2 more open heart surgeries or possibly more.

Bentley:
Bentley is 7 months old and has TOF. Her first open heart surgery is scheduled for May 20 (less than 2 months), she will then have the complete repair. During the surgery they will patch the hole, and work on her pulmonary valve. Most stories I have read about or talked to other moms, their surgeon were not able to save their pulmonary valve... it all depends on the valve... how narrow it is to begin with. Bentley's cardiologist says her pulmonary valve needs some work for sure.. but he thinks he might be able to save it, which will be AMAZING, he just won’t know until he goes in during surgery. If he can save her pulmonary valve and everything goes smoothly this could very well be the only open heart surgery she will need. Please pray for this. However, if he is unable to save her pulmonary valve she will definitely need 2 more open heart surgeries as she grows. Usually they do these around 5 or 6 and again around 18 to 20.. the timing depends on the growth of the child. We have decided to go with an amazing surgeon that has achieved so much (more details on him here) so I have complete confidence in him and his team. And I know that God will be guiding them all during the surgery. But again as the days go by I slowly feel that "fear" coming back. I use to be such a strong person, but the day I gave birth to my first child, I turned into the biggest baby you will ever meet.. If you would like to read the beginning of Bentley's journey.. how we found out and more on Dr. appointments, you can here.

I just wanted to post a little about this since I haven't before. Thank you all so much for praying for Bentley and our family. I cannot even begin to tell you how much we appreciate it. Really, it just brings tears to my eyes every time I get one of your amazing comments, emails, or if I am looking at a blog and see Bentley's prayer button. It just makes my heart melt to know that you care so much. We are so grateful for that!

NOT ME! MONDAY, STELLAN STYLE

Not Me! Monday, Stellan Style! Check other Not Me! Monday, Stellan Style here.

My heart broke when I first heard about Stellan. I am a heart mom myself so to see anyone else struggle with this it hurts, badly. So because of this..

♥ I did not break down and cry.. I mean bawl when I read that first post and EVERY post!

♥ I did not make Stellan a prayer button, so everyone could show their love and support.

♥ I did not get so excited I jumped up and down when I received personal emails from MckMama regarding the prayer button, she is amazing, and inspires me in so many ways.

♥ I did not love every single picture she posted of sweet Stellan nor those precious dimples!

♥ I do not refresh my computer a thousand times a day anxiously awaiting for a new update.

♥ I do not pray for this sweet sweet boy and his beautiful family EVERY day!!!

UPDATE: I just read on my seet friend Misty's blog Stellan is in Critical Condition. PLESE PRAY!

PRAYING FOR STELLAN

As many of you know, Stellen and his family need our prayers right now. This obviously hit me hard considering I am a heart mom myself and all we are currently going through with Bentley (my daughter). You can read Stellan's updates at MckMama's blog. I have talked a little with Jennifer (MckMama) today, and with her permission I have made Stellan a prayer button. I am not sure if she will be posting it on her blog for you to grab, but she has given me permission to go ahead and post it on mine for now if you would like it, please take it and share with others if they would like it.

<center><a href="http://www.mycharmingkids.net"><img border="0" alt="Prayers for Stellan" src="http://www.preshwebdesign.com/images/stellanprayers.png" /></a><br/></center>

Please do not forget about the give-a-way I am having here. Considering what Stellan is going through at the moment it just shows how common heart conditions are in children. The point of the give-a-way is to spread the word.. CHD awareness. You can read Bentley's (my daughter) heart story here. So please if you have a minute take a look at the give-a-way and enter, you have until this Friday to enter. You can click here to go to the give-a-way or you can scroll down to the next post and read the details on how to enter, it's simple! And please continue to keep Stellan and Bentley in your prayers. Bentley's prayer button can be found on the upper right side of my blog.

PICTURES -THANK YOUS - DR. APPT.

Sorry for the poor quality of the video. It is my first..

This is her first year to try t-ball out. I don't think she cares a whole lot about it, but she sure looks cute playing!

The boy can dance.. he is break dancing here..

I heart these chunky cheeks!

Bryson just finished dancing and Brenna is taking a break before she starts back up.

Remember how I said Bryson is the smallest & youngest in his age group.. Well here is how he is going to look playing with all the boys. Good thing he is GOOD.. because this picture doesn't show the height difference enough.. very cute!

Practice was a little windy, but Bentley is always ready to smile for the camera!

I couldn't post all the pictures I wanted since I talked so much today, so I will have another catch up day coming soon with lots and lots of pictures. There are just too many I want to share!

I would like to say a huge thanks to everyone praying for Bentley. It brings tears to our eyes to see people that care so much. When I started our blog, I did not know how connected the blogger community was. I started the blog to keep family updated on Bentley's condition as well as Bryson and Brenna. But I have been AMAZED to see how connected everyone really is, how religious you all are, how caring you all are, how friendly you all are, and I could go on and on. So from the bottom of my heart I want to say thank you, thank you to all of you that have prayed and praying for Bentley, emailed, commented, following her journey, and posting her prayer button. Each of you have helped given me peace knowing that there are people like you out there all over the world that are praying for our little girl. Please continue to keep her in your prayers as we have a tough road ahead, with her open heart surgery soon approaching. If you are one of these people, leave a comment if you wish and introduce yourself! I would love to see you all! I also owe a HUGE thank you to Kelly. Kelly has changed many lives, mine being one of them. I found her blog when she gave birth to Harper, I have followed their journey ever since. Her journey has reminded me to put ALL my trust in God. So much peace comes with that. So thank you Kelly for all that you do! I am still praying for precious Harper and I am so glad that she is so happy and healthy. What a miracle she is, and what a special little girl to have a mom like you!

We will soon be going to the pediatricians office.. Bentley is due for her next Synigis shot. This shot is very important, it is the one that helps prevent RSV. It does not prevent it completely but it does decrease the chances of getting RSV and I have to say it has been wonderful to us so far! I will be finding out her weight.. and checking her oxygen level.. this is very important, her oxygen must stay high or else they will reschedule the surgery for an earlier date. I am going to attempt my first wordless Wednesday tomorrow, so I will update about her appointment on this post when we get back today. So if you come back to check on Bentley after her appointment, scroll down here to read the details.

UPDATE: We had a great doctors visit, Bentley's oxygen is was 100% PRAISE GOD! Prayers are working! With her heart condition, her oxygen should not be this high, it should be in the 80's or lower. GOD IS SO GOOD!! Unfortunately, open heart surgery is the only way to repair the defect.. and it must be repaired for her to survive. As scary as this is, I am so thankful there is a way to repair the defect. GOD IS SOOOOOOO GOOD & HE IS PROTECTING BENTLEY! Please keep the prayers coming!

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.

PRAYERS FOR MY BABY BENTLEY

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.

Blessings,

Crystal