Monday, August 15, 2011

Our special heart..... "Zeb"

My friend and fellow heart mom - Stefenie is once again  sharing  "Every heart has a story ... " on her blog,  linking and connecting heart families across the world to help connect and support each other but also the main purpose is to spread awareness of CHD ( Congenital Heart Defects). Stop by her blog and read these stories, you will be very BLESSED . 1 in 100 CHILDREN WILL BE BORN WITH A CHD.... What if 1 of them was yours??    I never even knew about it until it happened to us... Spread Awareness and Create Hope ~!


If you were to see our family walking in the mall you would never imagine that we have  been touched by Congenital Heart Disease. You would see a mom, dad , 2 daughters, and a pretty healthy looking 4 year old.  Just looking at the picture above you see a 4 year old little boy full of life on the beach. You could never even guess, he had been in heart failure two times, had 2 lifesaving closed heart surgeries, one 1 open heart surgery only a year and a few months ago.   You could observe him playing and see me ( his mom) close by watching every move he makes and think - "Wow!, She is very overprotecting of him. Just let him be a boy! "  or you can see us around town and say to me "Hey, Is he playing Soccer this year? "  and tears spring to my eyes,  as I say "No,he's not playing."   It is not something you can always view from the outside, in fact CHD's can hide in some cases and you don't find out until you are sitting in and emergency room with your 4 week old baby boy and they are not sure if he is going to make it. At this point he is in full blown heart failure. He has to be flown to a hospital 4 hours away (if he makes it) to attempt to save his life.   This is our story, this is our life........

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.

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.
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.

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 son'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.
Alot of people, (meaning well) will ask me " So is everything ok now? He's fixed right? " .  It is a hard question to hear and your momma bear comes out but you just smile and say ...He is doing well now.  There is no fix, no miracle cure. CHD never goes away.  Zeb goes to his cardiologist every  6 months and everytime we go we sit and hold our breath waiting.  The Dr. tells us every time, that eventually Zeb will have to have more surgery. For now his pressure is stable even though his valve is repaired, it is stenosed. Also they are always monitoring his mitral valve which has a slight leak and is deformed but it is good now as well.  He can be a typical little boy and yes, we do let him do that to some point.  However , you will notice me being very overprotecting as the average person may call it . Yes I am a pulse ox, germ gel toting Mommy and Yes I watch every move he makes and make sure he doesn't play to hard , but this is my NORMAL.  (Smile)

I have shared two videos that I made for Zeb, aka Zbug  with parts of his heart journey on two previous posts....See them here: 


Also don't forget to stop by Stef's blog and be introduced to amazing heart families and brave kiddos...You will be inspired and BLESSED!

Zeb starts 4K tommorow and like the typical mom I will shed some tears. However my tears  will have a little different meaning then most.  Yes I am sad that "my baby" is growing up., YET I REJOICE as I see him with his little backpack on all ready for school tommorow and I think of how far he has come as I see him embracing life. He is so BRAVE and He is our HERO 'aka' as our superman.... SO  YES I AM THANKFUL he is going to 4K... he's come a long way baby!! PRAISE GOD!!!

We are so Blessed to be able to participate in this blog event and we look forward to meeting new friends. Thank you for taking the time to stop by our blog. God Bless you All!! :)


Rhonda ~



Thursday, June 9, 2011

We've been BUSY......

Miss you guys!! I will be back soon...

Love ya
Rhonda ~

Tuesday, March 22, 2011

OUR HERO - Zeb's Heart Journey VIdeo II

Finally was able to bring myself to compile and share all these pictures from Zeb's surgery a year  ago. I think of how far he has come and how strong he is and I am so thankful.  I was inspired to post these by a very special heart mom friend... Jen and she doesn't even know it. She posted right away all the pictures of her son Andrew during his recent OHS and time in the hospital  and I was so BLESSED to see such a strong fighter and encouraged and I realized that I didn't post Zeb's because it was hard for me but how many others could it possibly Bless??  To see these children and how much they have endured and to see how AMAZING they all are, gives me HOPE to face another day and STRENGTH to know that we can ENDURE this journey together. I love you my heart friends, thank you for sharing your children's journey with all of us.
Stop by Jen's Blog and see how  Andrew is doing.  Also, if you missed Zeb's Heart Journey Part 1 it is at the bottom of my Blog. 

Love ya

Wednesday, March 16, 2011





Saturday, March 5, 2011

Sometimes you just got to chill .....

We got a tired little boy..We have been doing so much celebrating   his 4th  birthday and we haven't had his party yet.....

sleepy little how his hat is down...chillin out..


  Been catchin up with all my blogs since I haven't been on blogger this week reading all of your blogs...LOVE YOU ALL!!  I am behind.... I got lots to share including Zeb's birthday festivities....his party is this weekend the 12th so I will share a big post after that... We are so BLESSED and so Thankful!

Many Blessings and Lots of Love to you ALL,


Monday, February 21, 2011

Reasons to smile...

I don't have to look for reasons to smile...
I just look around and see what God has done in my life....

I have an amazing Savior - Jesus who loves me unconditionally.....

I have 3 beautiful  children when Drs. said I couldn't have any...
I have an  wonderful husband  and father to our children.......
I have a miracle living in my home and everyday when I see him I am reminded of God's Awesome Grace...

- Lately he has decided that he is no longer Zeb, he is now Shark Boy from the movie Shark Boy and Lava Girl
and he is always doing something fun and silly to make me laugh...

He has a SMOOTH style...He did on his own!!  HAHA

It is so hard to believe that he will be 4 years old next week, and that it will also be his 1 year anniversary of his open heart surgery. He is amazing and stronger than I have ever been in my life.   We didn't get to Celebrate his "Birth" day last year, their were no presents, no balloons, or even a Happy Birthday on his birthday.... My son had open heart surgery  on his day, only by chance, since we got bumped but I will never forget the birthday that I could not even tell my sweet son as I held him before surgery, Happy Birthday.   I cannot explain that pain.
This year we are going to CELEBRATE BIG , the miracle we have and his life and the joy he brings. It will be all about him!! I will share all of it in future posts...but I can tell you ..IT IS GOING TO BE AMAZING!!!  We have been so BLESSED and I am so thankful beyond any words!! 

Much Love ~


Wednesday, February 16, 2011

Go ahead call me Crazy....

 My Friend Stef at is having a blog event and we always love to participate. If you already are a reader of my blog, you know me well, if you are new to my blog, I am so excited to have you and I hope you stop by back anytime. 

I  don't know if it is really possible to express how different and how much our relationships with just about everyone has changed since almost 4 years ago the CHD monster came into our life .  I could say it was like a storm, but with storms you usually have lighting and thunder first, we had no warning.

Zeb being taken to lifeflight at 4 wks old

You think that your life is pretty much set and mapped out for you and you know who your family really is, your close friends are and you either have an established faith in God or you don't , and you know the man you are married to, until something happens and everything you have known to be true is sort of hazy. You really don't know anymore, and you have to search your soul and find it again. I can say this is what happened to us.

I will say that I have been very BLESSED to have many friends. I cannot count on my hands and feet the number of friends that I actually have.    I am very thankful.  However we all know that there are friends and then there true friends, these I can count on one hand. The kind that if you were jumping off a bridge, they would jump with you to make sure you didn't get hurt as you fell. In a world when bad things happen and people don't know how to react you find out who your real true friends are.  My true friends never left my side, they were in the PICU with me when the Dr. gave us the devastating diagnosis, taking control of my girls, getting them food, taking over when I could not stand. They traveled  hours at the drop of the hat to meet us and wait with us and pray for our son, every time.  Every single Dr. Appt for 3 1/2 years they have text me waiting to find out what the report is, ready to run to my rescue if I needed them. When my son was taken back for open heart surgery, they all surrounded me in the waiting room praying. This I can say is a true friend and these relationships did not change, in fact I think that they all grew closer. They view my children like there own.  I can say that I felt love that could only come from God.  These relationships help to make me a stronger person.  I am strong because I know that when I am not they will hold me up. This is an amazing gift, and I know it is from God.

 Now of course, It is not always sunshine and roses when it comes to other  friends.  You have people who don't understand you anymore and think you overreact to everything. They see my very active almost 4 year old and he looks perfectly healthy and they think, she is just crazy.  I have been called that many many times.  People do not understand why my husband posts a big sign on our door warning you that if you are sick, you can't come in to our house. They don't understand why I have germ gel in every room, my car, my purse. They don't understand that if my son is having an off day or he just doesn't act right I think it is his heart.  I sometimes stay home from events, church, etc. if I know the flu or some other illness has been going around.   If he runs a fever, I don't wait it out, I go to the doctor right away.  They think that I am crazy, but they have never lived the nightmare of heart failure and not know if your child will live or die.  Its also hard for them to understand why you are so protective and want let him stay with just anyone. I am not a mother who just leaves my children anyways but now I am worse. I will admit that CHD rocked my world and yes I am changed completely but everything I do is for my son and my girls. I will protect them. God gave them to me as a gift and I will sacrifice for them whatever the cost.   So go ahead call me crazy...I CAN TAKE IT!! I have lived through worse.  It is hard to admit and sad but I have had some of these attitudes from family too. 

Let me begin with saying that I do have an amazing supporting family but we all know that family is not perfect either and neither am I.   Our family has embraced us and stood by our side, caring for my children, helping out any way that they can and I am BLESSED by this. However,  some relationships have changed some for the good and some not.  But I take this atttitude, I will choose to LOVE.  If they choose to not understand me or think I am crazy, then so be it. I  have been extremely loved and I have been hurt by family during this 4 years but CHD changes you and some things just don't matter anymore. I will not argue over the little things or  waste time that I have with my children worrying about something that I cannot change.    I will be who I am suspose to be in Christ and this is why I will not elaborate on the hurts because in the grand scheme of things, its ok. God will work it out.

As I said GOD will work it out. The relationship that has really changed is my relationship with God.  I have always been a christian and I have always loved God.  Until CHD I actually thought I knew what it meant to "Walk In Faith" .  I have lived with almost 9 years of infertility and prayed for God to give us children, right?  WRONG!!!  You do not know what it means to Trust in God until you see your child lying  on a hospital bed and there is nothing you can do.  I have never felt so helpless in my life and  I knew that nothing I said or did could change that. It was totally up to God. You learn a whole new Faith. I knew that I had to trust God or go completely mad.  I am not saying that I am super human and don't worry because I do, I worry way to much. I am just saying that I now have a complete understanding of trusting God.  When you have nothing there is still hope in God. My prayer is that people will see God in me and that I am on this journey to help others and that his Glory will shine through.  Then of course you have the people who don't understand this and think that you are again CRAZY....Look at all you have gone through and you still Praise Him.. Well YES I DO!!  I hold a miracle in my arms today because of his Grace.  (Really I have had this said to me.)

I guess the relationships that have changed the most would be my immediate family relationships, my husband and my children.  I have seen a man that I have been married to for 20 years, yet I have never met until now. I have seen 2 of the bravest and strongest big sisters in my sweet girls.  Its hard to say when it our family changed but it has. My  husband and I have always been close, but CHD has brought us closer. We are united together in that whatever we have to do to take care of our son and our family we will do it. Together.   I told you before that I am a worrier. Some days I just can't seem to get it all together, and he will just know that I need him to say its ok.  He will just take over.  I have seen strength in him and love in him that I have never seen before and I have seen him broken.  We have leaned on each other in that if one of us moves we both will fall. There are days that we have arguements because I overreact but he keeps  me grounded.  We know that we are on the same team at the end of the day and that we don't ever quit the team.  CHD has made us strong and has given us a renewed commitment.  We might not always say it but it is there stronger than ever.

Me and My husband Sonny of 20 years

Our daughters, they were so young when CHD happened to our lives. Preslee was only 6 and Kerrigan was only 4.  They have seen more in their young lives than most.  They have seen things, ugly scary  things that young children shouldn't have to see or endure.  They have experienced trauma.  There was no preparing them and sitting down and having a talk with them. They lived it right along with us. Preslee at 6 years old had to be her brother's hero in a panicked ride to the Dr. and monitor her brother's breathing.  I will say they are way beyond their years, I regret this. I wish I could have sheltered them but it was not to be. We did not choose this, it just was the plan that was laid before us.  However today, they know that life is precious, they know that life can change at any minute,  they are not afraid to ask the hard questions about their brother's health. They are fighters right along with us and they know that it is not in our hands but God's hands. They have had to miss alot of things, (the first time Zeb was sick we completely missed Easter with them) and have been shuffled around alot because of their brother's health but they are such troopers, they take it and they keep smiling and they are not jealous, they love Zeb as much as we do. I always say he has 3 Mommies. We try to make special time with them so they feel special also. It has been very hard to be away from them when Zeb has been hospitalized.  We don't want them to ever feel that they are not as important to us. Having one child with a chronic illness is hard on the other children, bottom line,  but our sweet girls, they make it look easy.   So yes our relationship has really changed we are more united as a family unit and these girls know every day how special they are to us and they are their brother's biggest cheerleaders. We are very PROUD of them.

Kerrigan & Preslee - Our sweet daughters

This has been a really difficult subject to talk about and I think I have covered most of the relationships that have changed and been affected. I can say that even though some are good and some are bad, every thing has a purpose and even though somethings I will never understand I  just keep going forward and hope that someone will be BLESSED by our journey and love their children more, and treasure their family more, and see God for who he really is They can call me CRAZY if they want..I really don't care!  If only for  HIS Glory I will go!!

Many Blessings,

Rhonda ~

Thursday, February 10, 2011


                                    CHD AWARENESS WEEK  FEBRUARY 7-14TH 

 WE ARE 1 OF 100



This is Zeb right after surgery, the first time I saw him.

Our lil Braveheart



7:30 AM - 10:00 AM



Tuesday, February 8, 2011


It is CHD AWARENESS WEEK... and I have yet to post a blog about awareness. This is not because I am slack or I am lazy or that CHD Awareness is not one of the most important causes in my life.  It is because this week our family has been hit by great loss.  To say I we are heartbroken would greatly under estimate our feelings but it is the only words I can find.

This week, I have seen a beautiful life leave this world for heaven. I have seen a mother tell her baby goodbye for the final time. I have seen a beautiful 6 month baby boy laid to rest. I have cried out to God, Why? I have felt hurt, anger and sorrow but yet I know that I have not felt one ounce what my sweet cousin, Amy  has felt in saying goodbye to her child, Baby Jayden. Today was his funeral and it was a precious service and so fitting for him and his life. He was a light to this dark world but God had bigger plans for him. I know he rests at the feet of our Savior.  In this I have complete Faith.  I will see him again in Glory.  My life is forever touched because of him. I love this child like my own and he carried a piece of my heart with him to heaven.

However, today I can say that somehow as our family's world has been turned upside down, off set into a time warp so to speak. I have become more AWARE.  Aware of how life is so fragile and that it is fleeting.  Aware that all around us there are things happening beyond our control.   To me it is not fair for this to happen. It is somehow wrong, yet it happens every day. Somewhere, a mom is saying goodbye to her child, every day.   Oh God, I cannot imagine.

As a mother of a child with CHD. I am AWARE of the risk, I am AWARE of what could happen. This is why I care so much about CHD AWARENESS.  Our message needs to be heard. I never knew what a CHD was until it happened to our son. Until we almost lost him. I can say during those hours of uncertainty I could barely breath, much less stand.  Yet everyday mothers are losing their children to a monster called CHD and many of them have never even heard of it until it happens to them.  We are 1 of 100 and we had to ask.."What is a CHD?"  This should not happen.  

Our sweet Jayden was not a Chd baby, he had a brain injury and nothing I could have said or done would have changed that.    I know that I cannot control CHD either, but I can be a voice and tell everyone about CHD and the signs and the simple test that can be done in a hospital that can save another family from the heart ache of losing a child because of an undiagnosed CHD.  I can do something, I hope you will too. 

Spread Awareness...Spread Hope...Support Research.... Make a difference!

Rhonda ~

RaRa Loves You Jayden....One day I will hold you again

Tuesday, January 11, 2011


Zeb really really LOVES Snow!! Ya think???

Preslee- Don't let her fool ya..She has a snowball ready to hit me!!

Kerrigan- Nope...She is not innocent Either!!

And as cute as he is....Nope Neither is he~!!

Enjoying our "SC" Blizzard - 1/10/11 ( Daddy was taking Pic)

Many Blessings,

Rhonda  ~