Isaac Ciluffo Isaac's Beat

First post: 5/19/2016 Latest post: 6/16/2016
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. 

We picked "Isaac's Beat" as name because it all comes down to his heartbeat. We have came up with a logo based around Isaac, a heart, and a beat. Below is our story..Isaac's story.  

Becoming a parent is all John and I have ever dreamed and prayed for. Our prayers were answered and our dream came true on December 28, 2015.  Isaac Asher Ciluffo was born. He is our son!  There are days we still look at each other in awe over the fact that Isaac is ours.  Of course, he is the most amazing and beautiful thing we've ever laid eyes on.  John and I have fallen in love with our family, our son, and each other all over again.  

Some of you can attest to bringing home a newborn has its challenges.  What does that cry mean? Why won't he sleep? Did I do something wrong? I can't begin to tell you how many times I called my mom, friends and the nurses line at the pediatricians office. You know that excitement you had when bringing your baby home about showing him off to everyone you've ever met? I have that picture of Lion King when he's on the mountain and holds his baby up in the air to show him off. We didn't get to do that.  This is why a lot of you haven't met Isaac, yet. If you can believe it, Isaac still hasn't been to Target or the mall!  

Our situation isn't normal but it's our normal. The day we will never forget, September 28, 2015 (I was 25 weeks pregnant), is when we found out that our baby boy has a congenital heart defect (CHD). I had been admitted to the hospital due to some bleeding.  They couldn't find where and why the bleeding had happen. So, I was sent to the high risk unit to do an in depth ultra sound and that's when we were told. From that day on, we had countless doctor appointments, done hours upon hours of research, worried and prayed.  It was a long and worrisome pregnancy for me. I was watched closely by the high risk doctor.  There were some weeks were I felt like I lived at Mercy. I had anywhere from 3-4 visits a week until Isaac was born.  

December 28, 2015. The best day of our lives! Our big boy was born weighing in at 8lbs and 7oz.  He was in the NICU for 10 days.  All the doctors (pediatrician, cardiologist, NICU doctors) put so much fear in us when we brought him home. HE CAN'T GET SICK!  Of course, this has been the worst cold/flu we've seen in years.  He would be hospitalized if he were to get the flu.  This is why we couldn't take him in public, be around kids, or do much of anything.  So much for my Lion King moment. This is when mama bear mode set in.  Do you what you have to do.  It's what is best for Isaac and that is all that matters.  It's no more about those moments I have envisioned. My world is now Isaac's world and I wouldn't have it any other way. 

Tetralogy of Fallot or TOF. 
This is the CHD that Isaac has. Before I go into TOF, did you know that CHDs are the most common birth defect? Did you know nearly one of every 100 babies is born with a CHD? I didn't know these facts. They are mind-blowing if you ask me. TOF affects 2 in 10,000 children. There are 4 components to TOF.  Isaac has all four and will be undergoing open heart surgery to repair his heart.  When Dr. Huddleston ( #1 cardiac pediatric surgeon in STL) goes to repair Isaac's heart, he will fixed two of the four problems.  The other two problems will be able to repair themselves after surgery.  Here is more information on what TOF is. 
Tetralogy of Fallot (TOF) is a cardiac anomaly that refers to a combination of four related heart defects that commonly occur together. The four defects are:



- Ventricular septal defect (VSD) (http://www.cincinnatichildrens.org/health/v/vsd/)
- Overriding aorta − the aortic valve is enlarged and appears to arise from both the left and right ventricles instead of the left ventricle as in normal hearts
- Pulmonary stenosis (http://www.cincinnatichildrens.org/patients/child/encyclopedia/defects/pvs/) − narrowing of the pulmonary valve and outflow tract or area below the valve that creates an obstruction (blockage) of blood flow from the right ventricle to the pulmonary artery
- Right ventricular hypertrophy − thickening of the muscular walls of the right ventricle, which occurs because the right ventricle is pumping at high pressure

Babies with tetralogy of Fallot usually have a patent ductus arteriosus (http://www.cincinnatichildrens.org/health/p/pda/) (PDA) at birth that provides additional blood flow to the lungs, so severe cyanosis (turning blue) is rare early after birth. As the ductus arteriosus closes, which it typically will in the first days of life, cyanosis (blue) can develop or become more severe.

Thank you Lord, Isaac's PDA has remained open therefore he has not turned blue. TOF babies generally have "tet spells."  Turning blue, low oxgyen levels/saturations, lethargic, sweating while eating and going limp after a major fit are all things that could happen during a tet spell. Heart babies have a heard time eating so in turn, they can't gain weight. Can you imagine having a newborn baby at home and having these additional worries?  We have to have a constant eye on Isaac.  There's no letting him cry it out here.  It was hard in the beginning to wrap our head around this. Isaac looks like a healthy and big baby boy.  He hasn't turned blue, his pulse ox has been in the high 90's, he hasn't had a tet spell and did I mention Isaac is huge! He has no problem eating.  We are so thankful that Isaac hasn't had a tet spell and we haven't had to see him during one of them. Thank you, Lord! Isaac is considered to be a "pink tet" which is the best case of having TOF. This is considered to be a text book case of TOF, too! I will take all the positivity I can hear. When we met with the surgeon, he was in disbelief over how big Isaac is. He asked if we were in the right place and how we got here. Our cardiologist said Isaac is doing so well because his PDA has remained open this whole time. 

Isaac's open heart surgery is on May 19th at 7am at Cardinal Glennon. While in surgery, Dr. Huddleston will place a synthetic material over the large VSD or hole. Then, he will repair the pulmonary valve and close the PDA. Surgery will last between 6-8 hours. Isaac will be in the PICU for 3 days and then in a step down unit for 4 days. 


We ask for your prayers and support.  Isaac is loved and prayed for by so many people and we are so thankful for that.  This will be the hardest thing John and I have ever done on May 19th at 7am.  This is why we created this page, to keep you informed.

Thank you for prayer, concern and support.  

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