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"

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

Many Blesssings,

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!! :)


Much Love and Many Blessings,


Sunday, August 22, 2010


I tell you I think I need to go into the business of writing a potty training soundtrack.. This week I have done everything I know including some crazy potty songs to encourage the Zman to potty and stay dry!!
The first song we sang was to the tune of NO Parking on the Dance Floor ---Taking it back old school

" NO POTTY ON THE UNDERWEAR BABY" NO POTTY BABY" ...Lol. Zeb loves this one..

Then the next song  to the tune of Party all the time.... "POTTY ALL THE TIME" POTTY ALLLL THE TIME" ...

I was really beginning to thing my musical talents or lack of was working because he was doing great and we even through in a dance number. Wonder if we can get on that show ...SO YOU THINK YOU CAN DANCE? I  want to be on SO YOU THINK YOU CAN POTTY!!! HAHA

Anyway the Zman, my sweet lil innocent boy has gone to preschool and stayed dry 3 out of 4 days and then he will come home and guess what he does??? Well...HE lets it rip!!!!  Everywhere ! And he is not no skimper on the me!! UUGH!  WHY ??? I ask him and he says..." I don't want no gum Mommy".... HA~! Well you caught me I was bribeing him too!!

So I guess if we don't get this my sweet, precious, super stubborn, 3 yr old boy will have to go back to the 2K class. He is on a 2-3 wk probation.. OH MY Probation at 3 yrs old.>I REBUKE THAT IN JESUS' NAME!!   I know if that happens...those 2 yr olds will be thinking like who it this giant boy in my class because those of you who know Zeb know he is one tall lil guy~~

SO here we go for round #2 ...Potty Training/ Singing / Dancing 101 ....


Rhonda :)

He even got the Tattoo to go along with his Potty Probation...LOL!!

Who could resist this face??? LOL! ! I can't be mad!! :)

Saturday, August 21, 2010

Need Your Opinions, Your Advice....

I have really been behind on blogging lately , I have missed it alot really. However today, I have something on my heart that just has to be said.  Most of you who are my blog friends are also on my facebook, so you have seen that I have been requesting daily prayer request  for my cousin's little boy Jayden. He is 2 weeks old. He was born 8 wks premature and he shortly after birth a tramatic brain injury occurred. It is not clear what happened and the doctors have no explaination. I can tell you later that will be sorted out.  Anyway, the doctors say that Jayden has severe brain damage and they give little hope for him. However, they will admit that they really just don't know because he is so young and he will grow and mature. My cousin's family has just endured pure horror from his caregivers.  Ok..Now to the point of my blog.

As a heart mom, and all of you fellow heart moms and friends. We have endured long hospital stays, and all kind of health care facilities and employees. I have NEVER been treated the way they have been treated. I am so angered and even shocked at some that has been said to them.  First of all they are told daily that they have no idea what they are getting into as for the care that baby J will require...WELL IS THIS THEIR CHILD?? DO THEY HAVE TO PROVIDE AND CARE FOR HIM???   They have even came into to find a DNR on his chart/incubator that they never signed for. Can you believe that?

They are asked daily anytime that they have to do something for him, do they want to continue treatment or just let him go.  She has told them many many times to do everything they can do for him. It is almost like they are trying to make her give up.  I know that most of you are praying people and believe in the power of our ALMIGHTY GOD!! We are believing in a miracle for Sweet Baby J.  We know the reports, but he is such a fighter, he even was off the vent for over 24 hours and doing well.   However, they never give her any hope, it is always about his brain injury and how complicated it will be to take care of him etc etc. They encourage her daily to just give up on her baby.  Can you believe this?  I just wanted to get opinions from my heart friends and what you think?  Let me say this, his parents are young and this is their first baby, but they have a huge support system, including my husband and I. However the hospital want even let us take shifts sitting with the baby, they said the family can only see him if he is dying.   I know I am all over the place, I am angry.  What I am trying to say is that his Mom and Dad  have said that if the baby was suffering or they were at a point where they were doing things to him and not for him then they would let him go, but this is not the case. I want to know your opinions, heart community, or mom's in general, and prayers......We are praying, watching and waiting for a miracle...I believe that this lil fighter is going to amaze these negative nellies....  Here is a sweet pic of Jayden..

Sweet Baby Jayden

Thank you guys...I got lots of blogging to catch up on  and school stuff and Potty adventures, but right now I am desparate for advice for sweet Jayden..We love him so....Want you please pray with our family for him??

Rhonda :)