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 ~