Thursday, December 23, 2010

Merry Christmas from Our Heart to Yours.....

Zeb wishes you a Merry Christmas!!!

Z--- I mean Rudolph wishes you a Merry Christmas!!!

The Whole Lyle Crew...Wishes You a Merry Christmas!!!

Our Family wishes you a wonderful Christmas filled with Love, Hope, and Miracles!! God Bless You all this Beautiful Season and May we all remember the reason.... JESUS...The Newborn KING!!!

Many Blessings,
Rhonda :)


Tuesday, December 7, 2010

Tuesday Funnies....



As you guys know there is never a dull moment at the Lyle house but a couple things happened last night that just had us in stitches and if you are like most of us on Tuesday morning after the Crazy Mondays we have you need a good laugh, so I thought I would share...

The first thing involves of course our lil heart...Zman...You know our innocent lil sickly child...YEAH RIGHT!!!  He is always an adventure.  A lot of people who don't know us will say " Now this is not the heart child is it?? "  Well YES!! Yes it is!! Praise God !! It is!!!  He does have bad days but let me tell you he is a normal rowdy 3 year old boy and he trys to run with the best of them.....Anyways..getting on my soapbox here.... so he was very quiet and quiet is not a good thing when it comes to Z...

Well I go into his room where he is suspose to be playing and what do I find??? WELL he is cooking... he has the tea bags/ box and all and he has opened them all of them into his toy box, his clothes bin, his mega block firetruck and he says...." Look Mommy...I am mixing up the sugar!"  Oh MY GOODNESS!!! And with the sweetest little grin.... I have never seen such a mess... I was just shocked. I had to walk away...... Well lets just say..I still don't know if I got all of the tea grains out of his room/clothes/toy box, firetruck... but I tried.... ( of course Daddy was not home to see this one...Thank Goodness)  :)  Life with Zeb..count on an adventure...sometimes a mess...Forever a BLESSING!!

Well the 2nd Funny includes me.... and You can laugh because I still am.. Finally Hubby comes home from work, then Fire Department meeting and whatever else his Monday holds...blah blah blah...uggh..I hate Mondays..usually and kiddies are in bed fast alseep and I am lying on the couch trying to relax a min before bed.  I here a noise from under the TV Stand..I keep thinking that a mouse  or some creature..GOD FORBID is trying to come into our house through our cable cord area because it is crazy cold outside. It is FREAKING me out! So I yell for my husband to come in there and he gets on the couch with me and we turn the TV down and he puts his feet up and we mute the TV and we keep hearing the sound..and I say see you hear it...he says "ssssh...be quiet.."  Then all of the sudden....The TV stand door opens and I scream...."AAAAH"  Really Loud!! ....  So much for the mouse or the creature of the night.....It was the dvd player the door was hung up and it was trying to open and it was hitting the door of the TV stand....My husband is still making fun of me. It is a wonder I didn't wake up all the kids... OH well..Like I said...It is never a dull Moment!!!! 

See You in The Funny Papers,

Rhonda :)

Friday, December 3, 2010

Decoration Problems???? Anyone????




LOL.....
MANY BLESSINGS,

Rhonda

Monday, November 1, 2010

Little Goblins

It's not Halloween without Trick O Treat, a Bonfire, Marshmallows, Roasted weiners, Candy apples, and
TONS of candy, aka sugar in a wrapper and of course the cute costumes. I love it! It is one of my favorite times of the year. I can't wait to see all the kids costumes and the pictures and it is so much fun and then I have to get creative and find ways to hide the candy when it is all over, but the memories are unforgettable! Here are a few pics of the costumes of my little goblins:





Happy Halloween 2010 !!



Our Beautiful Bumble Bee

Our Cute Guitar Diva




It's Superman!


Let's Party!!!!









Many Blessings,
Rhonda 

Tuesday, October 26, 2010

ZEBOLOGY

Sometimes I wonder how the world really looks from a 3 year olds perspective and then Zeb will give me just little glimpse of his perspective and it makes my day. I thought I would share.  Last night we were waiting in the car for Daddy while he was in the phone store ( it takes FOREVER) and Zeb said out of the blue: 
" Mommy when you are sick, you don't drive a car."  Me:  " Really?"   ( I know immediately he is thinking about my Grandma whom we help to take care of , she is 88, and has never driven yet he does not know this. )  Zeb: " Actually (his new big word) when you are sick you can't jump on the trampoline."    ( This of course breaks my heart, because I know immediately what he means)   Me:  " Well, You can jump on the trampoline now buddy! "   He then grabs me in the biggest hug around my neck you can imagine and with the biggest grin ever looks me eye to eye and says:  " I CAN DRIVE A CAR TOO!! "

SO that folks is Zebology!! He can do anything!! Yes ...I want him to know that he can do ANYTHING and YES he can drive a car...just not at 3 years old, I am still laughing about that face and that comment. It was one of those you had to be there to get the full effect but it was GREAT!!


Much Love and Many Blessings,

Rhonda ~






Friday, October 22, 2010

SEE ~ A Tribute to the Angels


*** note you will have to mute my music player at page bottom  to hear video ***

This past month has been just heart wrenching in the CHD world all the precious angels that have flown into the the arms of Jesus. As a mom of a child with CHD it was just too much to bear, however it wasn't even a small amount of what the mothers and fathers have had to bear in their loss. I cannot imagine. I cannot see.  Today, one of my dear friends, who lost their precious son Isaac asked  had I heard this song.  This song was written by Steven Curtis Chapman for his beautiful daughter Maria that he lost in a tragic accident. It captures something, I cannot explain. It is truly of God, it is amazing. I do not know what it is like to lose a child, I pray that I never do,  but I pray that one day we will See what God has for us.  I dedicated this song to Isaac, to Annabelle, to Cora, to Joshua, to Ewan, to Emma, and to all the many other beautiful angels that have flown into the arms of Jesus. I know one day we will all SEE.

From one mother's heart to another, I love you and I love your babies too. God Bless you and Keep you until we all SEE...I pray for you daily.

Many Blessings,
Rhonda :)

Thursday, October 7, 2010

Sometimes 9 is a Big Number..... :(

If you have 9 dollars you don't have much...

If you have 9 cookies you still don't have a dozen..

If you have 9 days off a year, you don't have much time off...

but when you have 9 children die of Congenital Heart Defects in a week just in the circle of CHD Mom's you know about it is 9 too many, 9 families planning funerals, 9 families hearts breaking.. Even 1 is too many!

I have not been able to get this off my mind this week, I have cried and cried, it has taken my breath, I have prayed and cried out for these mothers. I will admit I have been angry, I have questioned God, I do not understand.  It is not fair.  This beast called CHD continues to rage, and still there is not enough research, there is not enough funding, there is not enough awareness and for some there is not enough time. Do all you can ...help spread awareness, help fund research;  http://www.hopeforbravehearts.org/

Please continue to pray for all of these families each one of them need your prayers, http://www.team-ewan.com/ and http://www.fierceandfiesty.blogspot.com/, these are just two, sweet Ewan and Sweet Joshua. 
We love you Sweet Angels and we will meet you all again one day.

If anything Lord, Please help us not to take one day for Granted, to try not to complain, to remember that each day is a gift and that we are Blessed.

Much Love,

Rhonda

Wednesday, September 29, 2010

A CELEBRATION OF THE HEART........

This past weekend our family headed down to Charleston, South Carolina for the Little Hearts LowCountry Heart Walk sponsored by MUSC and for the Heart Kids are Superheros Pediatric Cardiology Reunion at the Children's Museum. We went to CELEBRATE our son ZEB and his courage, strength and the absolute Miracle that he is in our lives. ALSO to join with many of our precious "heart" friends as they Celebrate their Little Heart.  Here are a few pics; I have many more and I will try to post more later:






                                   
                                                         Our Sweet Kiddos..Ready for the Walk



 
TEAM Z .



 



Zeb and his Heart Friend Luci


We Got to meet Zach...He is one "SWEETHEART"


                  We got to meet our friend "Funky Heart" !!!


Went to visit our favorite nurse...Caroline!! We love her with all our HEART!


It's hard work being a Heart Warrior...

Our Amazing Surgeon...Dr. Scott Bradley.... WE ARE SO THANKFUL FOR YOU!


Cool Face Paint at the Heart Kids are Superheros!!


We Celebrate every day...Our Gift, Our Little Heart.... Zeb!!


We keep on pressing on toward the goal, more research, more awareness, a cure  for all of our children.


Many Blessings,

Rhonda :) 

Wednesday, September 15, 2010

I'M GONNA MISS THIS .......





















GOODBYE SUMMER 2010.......WE HAD A BLAST!! SEE YOU NEXT YEAR!!!

Many Blessings,

Rhonda :)

Saturday, September 11, 2010

NOTES TO SELF:

I find it is always a good thing to make a list either on paper or a file in your brain of things that are good to remember about a 3 year old with a Congenital Heart Defect.  You know they have to be kept still and quiet and calm...YEAH RIGHT!!  Here are a few of mine for our son, Zeb.

NOTE TO SELF # 1.

** Keep all Makeup/Eyeliner etc., up and out of sight, beyond reach unless ....

You want your 3 yr old to look like Paul Stanley from KISS... Rock on Zeb!!


NOTE TO SELF #2.


You might want to hide the baby oil or gel








NOTE TO SELF # 3. 

Sister's Black Nail Polish does not come off the "SHARK BOY" as he said he pretending to be. ...



NOTE TO SELF #4.

The Drs. Office is a Dress Up Factory to them ....



NOTE TO SELF #5. 

They love to help with the laundry....let's see 72 loads scoop will work just fine ...

NOTE TO SELF #6.

Sometimes you just got to go ALL NATURAL even if it is in the middle of a campground..

NOTE TO SELF #7.

This 3 yr old knows how to chill out....  So don't worry about him getting tired!

NOTE TO SELF # 7.

He can Party ANYTIME, ANYPLACE....He brings the Party !

NOTE TO SELF # 8. 

Never let this ADORABLE INNOCENT face fool you..HE IS UP TO SOMETHING!!!

Does CHD get him down????? NOT A CHANCE!!!  He keeps Mommy Hopping, and Laughing and LOVING EVERY MINUTE OF IT!!

Counting my Blessings,

Rhonda ~

Wednesday, September 8, 2010

WORDLESS WEDNESDAY







Much Love,

Rhonda ~

Thursday, September 2, 2010

A Stop in your Tracks Moment .........

Have you ever just been going about your everyday life and then something out of the blue, just makes you stop in your tracks.  Well I am sure that most of us have.  This is my stop in my tracks moment.  We recently got some pretty exciting news that I will share with you at a later date ( yes you will have to wait) but part of it involved a letter I received.  This is the one line from the letter.

Dear Mr. and Mrs. Lyle,

We have been informed that your son Sawyer Zeb Lyle has a life threatening condition/illness.....

As most of you know Zeb has a Congenital Heart Defect and had open heart surgery 6 months ago today exactly.  This is our 3rd year of the knowledge that our son has a CHD,  so we are not newbys or anything.  However  to actually read this on paper, actually made my heart skips a beat.  It is one of those surreal moments that you wish you were reading a line out of a fiction novel. You have a quick reaction that you know in your mind is denial. You say to self, well they cannot be possible talking about my child.   It is not a fun thing to see it in writing and to have to face the reality, that yes they are talking about your child. My beautiful precious growing 3 yr old son, who looks like any other healthy 3 yr old, but underneath he has a broken heart. Even though, he is doing very well and thriving, CHD will never go away, it is a life long condition. We are very Thankful that Zeb has done so well and for the awesome doctors who monitor him and his progress.  However CHD is still part of our everyday lives. It doesn't have to be a death sentence. It is still the #1 birth defect. There is still not enough research. There is still too many children who do not live to see their 1st birthdays. There is still not enough awareness. Most mothers and fathers to be still do not know what  a CHD is and that 1 in 100 babies are born with it.  Every 13 minutes a baby is born with a CHD and eleven of them to do not make it.  It is not enough.  This is why that it is so important to spread awareness and to support research.  Research is so important and so under funded.   TO a mom with a child with CHD, research means everything.   I am proud to be a part of a wonderful
non profit organization that does just that, research is a priority......
Introducing.....   http://www.hopeforbravehearts.org/


To find out much more about Hope for BraveHearts,  please check out my friend Shannon's Blog and meet 
her amazing lil miracle, Derrick.

www.carolinacarters.com/2010/07/introducing/html

Get involved...Spread Awareness, Donate to Research....  Make a difference..

and  hopefully one day no parent ever has to hear " Your child has something wrong with his/her heart." or
they never have to stop and reread  a simple sentence in a letter about your child, because it takes your breath away .

Many Blessings,

Rhonda

Our Little Fighter!!!

Saturday, August 28, 2010

A Moment that made my "Heart" Smile

There is not a day or even a minute that my son's heart defect is far from my mind. I will admit it, I worry alot. However, I pray daily that I inspire Zeb and all my children to be strong, not weak, to be bold, not shy, to know that they can do all things and be anything they want to be in life.  This is a great desire for me as a Mom to be their biggest cheerleader. To encourage them, to help them to see life as an opportunity, to embrace it.  

However, sometimes it is so hard to not hold on and not let go, especially with Zeb.  I can tell you that I am very protective of my children, and even more so of Zeb. I have to watch myself however because it would be so easy to convince him that he has limits on life. Even though,  YES he does have some medical/ physical limits, but he has no  limits on who he is or who he will become.  Will he be a NFL Football Star, most likely not, but can he be the coach..YOU BET!!  That is the mindset I have to keep each day.    I pray daily for all my children and I pray that I will encourage them.  I pray specifically for Zeb that he will not be defined as my broken heart, but for who he is. Yes we want him to be PROUD of where God has brought him from and  the miracle that he is.  I teach him not to be afraid of his scar, but to be proud of it.  We always tell him he has his heart zipper and  he is strong like Superman. (haha)  I can say I am not that strong. I have seen him go through more in his short life than I have in my 39 years and he is the strongest person I know. 

Sometimes in the quiet I will ask God...Am I doing this parent thing right? I didn't handle this so well today or yesterday, etc.  and then out of the blue you get the answer to your question in the least expected way.
Here is a conversation that Zeb and I had one evening this summer at the lake as we were walking on a rocky road. We both had on swim shoes.

Mommy:   "Ouch! Ouch! ...Wait Z let's stop a minute."
Zeb: "Why Mommy?"
Mommy:  "Because these rocks are really hurting my feet."
Zeb: "Why Mommy?"  *( he says why alot..LOL)
Mommy: " Mommys feet are very sensitive. These rocks are terrible. Are your feet not hurting???"
Zeb: " No Mommy, My feet don't hurt, I am superman"
Mommy:  " YES YOU ARE! YOU ARE AMAZING!"

I can say that made my heart smile and my day a little brighter.

Many Blesssings,
Rhonda


Your Always Super to me..Even when your Spider Man...
"Dreamnight at the Zoo" 

Monday, August 23, 2010

An unexpected Journey....A Heart that changed us forever

Every Heart Has a Story
A fellow heart mom created a special event for all of us - the "Every Heart Has a Story" event. It is a wonderful forum for heart moms to share our stories with each other and meet those with similar challenges, hopes and fears.



Our sweet baby boy, Sawyer “Zeb” Lyle was born on March 2, 2007. He was diagnosed as a healthy baby boy weighing 9lbs, 9oz. The doctor did detect a slight heart murmur but told us that because he was 3 wks early that it was perfectly normal and would go away in a week or two. During our hospital stay I noticed that his nail beds of his hands and feet were blue. I mentioned this on two occasions to the nurses and was told that it was perfectly normal. Even with this concern, we were sent home without a pulse ox test. It was never even mentioned to us as an option.


Our sweet 4 week old baby ...ZEB

At 4 wks old, I noticed that Zeb was unusually fussy before bedtime, not his normal cheerful self. He would not eat, he was sweating and I thought he was breathing funny, more through his stomach than through his chest. Of course I called the doctor’s office after hours and was forwarded to an ER Triage Nurse and had spoken with her two times during the night. She basically suggested I was being overly concerned and that he must just have a tummy ache, and suggested pedialyte and following up with the pediatrician. Finally I had enough, I knew something was seriously wrong, It was almost morning. I called the Doctors office again and basically demanded that they see Zeb. I got in the car and my husband met us at the Doctors office at 7am before they were even open. As soon as his pediatrician saw him, he also knew something was wrong. He called 911 and had an ambulance come to his office and he was taken directly to ICU at our local Children’s Hospital. After several tests a Pediatric Cardiologist came in and and told us that our baby was in critical heart failure and that he was born with a Congenital Heart Defect, aka CHD. A WHAT?? CHD??? We were so clueless. We had never heard of such a thing. WHY ?? Why is it that we had never heard of the #1 Birth Defect in the United States?? He was diagnosed with Severe Aortic Stenosis and a bicuspid Aortic Valve. The gratient pressure in his little heart was well over 100, his left ventricle was enlarged and overworked due to an undiagnosed CHD. How could this have happened? We were told that we made it to the hospital just in time, another hour or two without help and he would have died. We would have lost our precious son. The nightmare continued as our baby was put into a helicopter and flown to Charleston, SC to MUSC the only hospital in our area to perform the life saving procedure he needed. I pray that no other parents should ever have to see their baby flown away in a helicopter and especially not knowing if you would see them alive again. This was a horrible nightmare. It didn’t have to happen this way.
Zeb's 1st helicopter ride....Not what we would have chosen..
We finally 4 hours later reached our baby boy as we had to drive to Charleston. After his procedure were taken into a small room and told that they were able to open his valve to relieve the pressure but because he was so small it had torn and a caused a leak or insufficiency in the valve. I can today, still hear that Dr. Say...”Your son will have to have multiple surgeries throughout his life”. This was not a dream, this was our new reality. After 6 days, we were sent home and monitored weekly by the Cardiologist as to the next step to help our son’s heart. Exactly 4 wks later, he was 8 wks old he began to show signs of rapid breathing, sweating again and he was sent again to Charleston via ambulance as all the flights were grounded due to the weather and we could not wait and extra day. They were able to do the aortic vulvoplasty ( a closed heart surgery) again to open up the valve. He was sent home again 7 days later with the knowledge that he would be closely monitored because he would have to have another procedure and/or surgery again. This is the hardest thing I have ever had to face. Watching my child grow, play, laugh and live and waiting for the ball to drop, the ax to fall or whatever term you want to use. Cardilogist visit after visit we held our breath, waiting.

This is how we our baby looked the next time we saw him...

It happened when we least expected it. At our routine 3 month cardiologist appointment in February 2, 2010 the cardiologist gave us the news. Zeb’s heart has taken a turn for the worse and he will need Open Heart Surgery to survive. This was a hard day.  I cannot explain this, there are no words.

Zeb’s Open Heart Surgery was scheduled for February 26, 2010 in Charleston. We planned and prayed and readied ourselves as much as one could possible do. How do you ready yourself for your toddler to have open heart surgery? The day before we were scheduled to leave we were called from MUSC to tell us that they had two emergency newborn cases and Zeb’s surgery would have to be bumped back a little. As distraught as I was to be moved after all the anticipation and planning, etc. I wondered if those parents knew about CHD before it came in like a flood into their lives. The new date was given to me over the phone via the nurse and I think that in my world time stopped for a moment. The new date was 3-2-10. This date is our son’s 3rd birthday. I was so upset and speechless, I had to tell the lady I would call her back. My husband then had to take over, It was more than I could take. He called her back and confirmed the date. It was so heartbreaking. What child deserves to have open heart surgery on their birthday? However as parents, we have seen heart failure and we don’t ever want to go there again. So we agreed. Of course this birthday would be very different, no birthday party, no celebration, but much needed open heart surgery to save our son’s life.
This was our baby's 3rd birthday

Zeb had his open heart surgery on his birthday 3-2-10. They were able to do a valve repair instead of the Ross Procedure which was the planned surgery. Seven days later were sent home with the news that this is only temporary. CHD never goes away, there is no cure. Zeb is still recovering and we are so THANKFUL every day for the blessing our our son.

Getting better...Mickey Mouse always helps...
Currently, Zeb is doing very well, he has recently started preschool and we are fully into the adventure of potty training. We look at him sometimes and we forget only for a moment, but we are reminded forever by a somewhat faded line down his chest of where he has been and what God has brought him through. It still sometimes can take my breath, not because I hate seeing it but because I am amazed once again we would be given such a gift, such a fighter. We go back to cardiologist in September and we will once again, wait to hear the report. It is a hard thing but I know that we can do all things through Christ. His valve repair at his last visit looked fantastic, his gratient was a little higher than I would have hoped it would be, and he does have a mild mitral valve leak, but all in all he is doing great! I appreciate all my wonderful friends and your love, support and prayers. You can’t know how much you mean to me.


Zeb Today... 3 years old...OUR MIRACLE!

We know that each day is a gift. We are thankful for Zeb and the heart that changed our lives forever.

We have learned a lot and we don’t take many things for granted anymore. We are different people.

I don’t know why we were chosen for this journey, but we are Blessed to have Zeb in our lives and Thankful to be his parents. He is Amazing and our Hero. He is our Superman!! :)

OUR SUPERMAN!!!


Much Love and Many Blessings,

Rhonda