Thursday, January 19, 2012

Our sweet treasure...PLEASE PRAY ... ~

If you're my friend on facebook you know my grandma is very sick and in the hospital in ICU with a broken hip (now repaired), a possible mild stroke, sepsis, and pnuemonia and low blood pressure. It has been a tough 2 days. She is 89 years old and she is one of my most treasured blessings.  I was born on her birthday and I am her baby girl. (yes even at my age) I ask for you to pray for her and for our family. We know that God is in control and she is being cared for by him, and only  him. Her life is in his hands. Just wanted to share a letter with you my daughter Preslee wrote to her. She is actually her name sake... Sarah-Alice Preslee Lyle. Most children don't get the opportunity to know and love their great-grandmothers but my children have and we are so thankful.  It is a gift. She is fighting and hanging on, so we keep praying and believing. We have a hope... that our Wildcat will come back. She is so strong.

She is a fireball and my favorite Comedian...

 Dear Granny,

I love you and hope that you get better as soon as possible and that someday soon we can be together again in your bed reading Billy Graham books with each other and telling each other stories about our days. I am so glad to have you as my grandmother and to have you love me as myself. You are a wonderful person and a great granny. You are my world and I love you for having the heart to love me. God has a plan for me and you and loves us no matter what. He will prosper us and make us new in him. You are so funny and make me smile when I am with you. I will come to see you soon and I will write you another letter soon too. I'll try to stay away from the "meanies" and come see you soon because "saying I love you makes a person's day whole".

Your Dancing Doll,

* This letter is worth more than any amount of money in the world..I consider it PRICELESS and the meaning behind it even more valuable. God has surely BLESSED our lives with my Grandmother, Sara Elizabeth Giles. I pray he isn't needing a perfect angel right now... Pray with us.

God Bless you All,

This was yesterday.. 1-18-12... My sweet heart ..I love you so !

Tuesday, January 10, 2012

Tuesday's Gone Pics......

Just sharing some oldies but goodies.....I found...  I don't know if they were taken on a Tuesday but anyways..... haha

4, 9wks, and 6 yrs... Where has the time gone??

Can't believe this lil man is almost 5!!

love this one.. 

Gonna start blogging again least once a week...

Rhonda ~ 

Friday, January 6, 2012

Target Practice

Its been a couple of days since Zeb's 6 month cardiology appointment and I have finally come to terms with it. YES, all in all we got a great report, and I cannot say how THANKFUL we are.  I will admit that even in this thankfulness, I have been sad. Actually 2 days of complete sadness accompanied with nausea, and down right depression.  His gradient went up significantly since his last 2 appointments. This is a red flag, a sounded alarm. I am upset. I am scared. There I said it. 

Dr. L seems completely confident that Zeb is not in any danger now. I trust him with Zeb's life. After all he did save his life. God used this man to save my child's life.  He was very positive that we don't need to stress or rush him back in earlier than 6 months, but he did stress that he couldn't go past 6 months.  I was so frozen in the shock of the moment, I didn't dare ask him what happens if it goes up more. I know what happens, I know the reality. I know what we have  been told time and time again. I don't ever again for as long as I live want to hear those words. I will not even say it on this blog or anywhere out loud, but I know my heart mom friends know the answer.   It is always in the back of my mind but sometimes for a minute you forget.
For now , we wait and we believe and we hope in God and trust him for the miracle we know Zeb already is and we continue to be thankful every day.  This is what we do.

In reflection of the last visit, I couldn't help to think that somehow every time we go for the heart check, its like walking into a target range or target practice. You are going in not knowing if today is the day we are going to just be a target or if today is the day we are going to be hit with the bullet.  Frankly I don't like being in the line of fire or my son being the bullseye. It is not a good feeling. It SUCKS!!! I can say this I would stand in front of any firing range for him any day to keep him from having to face another $#@*(!#* . 

God  in his unconditional love and grace gave me some assurance that day as well, even as we got into the car to drive home, smiling on the outside but riddle with  hurt and fear on the inside, through song... These are the 2 songs that came on the radio:  "While I am Waiting" ( I will Trust You) - John Waller and then immediately  after, " My hope is in You Lord" - Aaron Shust.  I am still amazed every time he speaks to me so boldy. I am thankful...and I am clinging to these words and to HIM.  He is GOOD.

Rhonda ~

Thursday, January 5, 2012

Thursday Morning Car Ride .... and SITE IS UNDER CONSTRUCTION>>>

The Things going on in my car this Thursday Morning:

"Would you rather eat buggers on a sandwich or roaches? Remember Buggers aren't alive!"

"She's touching Me, and breathing on me!! "

Kerrigan reading to Zeb a Halloween book... in January.

Preslee telling me about this boy at school who pretends to hug hisself while making smoochie faces...He thinks he is funny... Really??  Then she says.."You know mom like he is making out?"" .... WHAT!!!! She is 11....I spun my head around like the exorcist lady on that one......

Radio Blaring Justin Beiber or Jason Aldean or whoever my daughter's have hijacked my radio with that given morning....and the sing along which with all the other chatter, I don't see how they do it... and then someone starts singing "All the single ladies".... That would be Z...he is so funny sometime....

"Mom...she wont read to me anymore!! "


It is a wonder if I ever make it there...LOL...

Rhonda ~

*** FYI I am working on my blog...trying to update it some.. so if you see something wierd on it..I am trying.. or maybe I just forgot..LOL...

My Blessings

Wednesday, January 4, 2012

Wordless Wednesday.... Counting Blessings...

Haven't blogged in forever, but I always read your blogs my friends.....I am going to try to start blogging more...

Rhonda ~ 

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 ~