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