Well, it's officially been a year since Cal's diagnosis. I do not know if I'm emotionally ready to tell his story, but I don't think I'll really ever be, and according to my dear friend, Cara, I don't have to be. So here it is. I'm hoping that this story not only helps me but helps others, raises awareness, and gives Cal a clear explanation of his scar and the extraordinary journey he was on...
My pregnancy was very similar to Cal's older brother, Liam. The only real difference was Cal's size. Cal was estimated to weigh around 7 to 8 pounds at birth. Two pounds less then his brother. Everything always checked out well with Cal right from the beginning, even on his birth day. 7 lbs 7 oz, 21 inches, February 16, 2012 gave way to a perfect baby boy. We couldn't be anymore in LOVE.
As we were leaving the hospital, the local pediatrician mentioned she wanted us to make an appointment in two to three days for a weight check. I asked my husband, Brad, to take Cal to the appointment as I was recovering at home. Brad came home a very proud Dad. His weight was on the rise. Brad mentioned that the doctor noticed he was a little jaundice and told him to keep an eye on it. In the next few days, Cal seemed to get more yellow and slowly I started noticing other symptoms, unsure if they were related to jaundice. I felt as the hours passed I became more and more obsessed with EVERY. LITTLE. THING: His skin does look really yellow. Oh, but in this light it doesn't. I wonder what it looks like in another room? By the window? Gosh, he's sleeping a lot. Is that normal? Does he have rapid breathing? His heart seems to be beating really fast, I think? Maybe that's normal. Where are my books? Maybe I should call the pediatrician. Wait, was his lip just blue? Lets go into a different light. The whites of his eyes are definitely yellow. And his heart IS beating really fast! I need to start timing it. Ok, he just woke up. Good. Relax. Take a deep breath, Mommy. Ugh, why isn't he eating? He just fell back to sleep. I think something is wrong. Am I overreacting? Where is the computer! BREATHE! And so, the call was made. I started explaining everything I noticed in the last 24-48 hours to the pediatrician as he took out his stethoscope and placed it on Cal's heart. "He has a murmur?" he asked in a shocking, puzzled kind of way. "Not that I'm aware of" I said. He shook his head confirming there was indeed a heart murmur present. He then tested his oxygen level. After a few moments of silence and a concerned look on his face he placed Cal in my arms "I can't send you home. You need to head to the emergency room immediately. I'll be right back." WHAT! Can this really be happening? What is going on?!
Tests after tests were taken. Everything was coming back normal and we were sent home after six hours to what the doctor thought was an innocent murmur. I phoned my brother, an ER doctor, to tell him the news. He suggested we get an echocardiogram done, an ultrasound of the heart, just to be sure. I then called the pediatrician, who was very surprised we were released, he also stated we need to get an echocardiogram done and was disappointed this wasn't done at the time.
Back to UH Rainbow Babies and Children's Hospital. A day that will never be forgotten. The day our world got turned upside down. Where the words "This is what a normal heart looks like; this is what your child's heart looks like" rings in my head repeatedly to this day. Where the term heart failure got introduced as I sat in a chair with my husband's hand clutched to my thigh. Everything the cardiologist was explaining that day was a blur. All I could do was stare at him in disbelief, wanting to ask him if my baby was going to live, but too afraid to hear the answer.
Cal's diagnosis: two Congenital Heart Defects. A small atrial septal defect (ASD) and a large ventricular septal defect (VSD), a hole between the pumping chambers of the heart. Treatment: Open Heart Surgery. A patch will be placed over the ASD and VSD to repair the holes.
We needed to get Cal to 13 lbs before we could undergo surgery for optimal results. At this point it was mentioned that during our battle to the proper weight, he will enter heart failure at 4-6 weeks of age. He will use every ounce of energy to eat. He will begin to suck, get tired, then fall asleep; awake very hungry, begin to eat, and then fall asleep exhausted again. Once he loses his sucking ability, due to weakness, we will insert a feeding tube through his nose. He will have weekly weight checks and biweekly echocardiograms, EKGs, and doctor appointments. We were not to be outside of a 20 mile radius of an emergency room or cardiologist. Our Little Peanut, 20 days old, about to embark on a journey that was unknown to many, including myself. All we could do was wait, let time take its course and pray that God has a plan for us.
Weeks and months passed. There were ups and downs along the way but Cal was beating all the odds and gaining an ounce a day without the use of supplements or a feeding tube. He surprised us all, especially the doctors. Although he was in mild stages of heart failure and needed medicine twice a day to regulate his breathing and to remove the extra fluid from his lungs, it was thought, at one point, he may not even need surgery. There was a small amount of tissue beginning to cover the VSD. That ounce of hope was all we needed to keep our spirits up. Cal continued to fight. He was determined. That's his style: he never gives up.
As tests continued, news started coming in unfavorable. Our cardiologist, Dr. Manish Bansal, noticed that his aortic valve was beginning to leak (regurgitation). An appointment following gave way to more discouraging news. The tissue that was beginning to cover the hole has caused more problems then good. His aortic valve has now prolapsed due to the amount of pressure the hole is putting on the valve. The leakage has moved from trivial to moderate. A conference has been called among a board of doctors to discuss Cal's case and to determine which direction we go from here. It is unanimous. Since Cal has reached the appropriate weight, the doctors and surgeon conclude surgery is a must and needs to take place within three weeks before the prolapse gets worse and the valve becomes permanently damaged. They will be closing the VSD to take the pressure the hole is causing off the valve. They will close the ASD as well. Everything we were trying to avoid for so long is now inevitable. Part of me was relieved. Part of me was as scared as one can be.
In the days leading up to surgery I began preparing myself. I viewed pictures of other patients in similar situations so I knew what to expect when seeing Cal for the first time post operation. I researched, read blogs, enlisted in prayer groups, signed up with the American Heart Association, met the surgeon, asked questions, and reviewed the guidelines for what to expect during and after surgery. As much prepping as I did, we could never be fully ready.
August 8, 2012: on our way to UH Rainbow Babies, again. A drive that was too familiar for liking. Although, this time, I didn't know when we would return home as a Family. Once we arrived, we were escorted to pre-op where we were able to dress Cal in his gown and give him our best wishes before the anesthesiologist came in. I held him in my arms one last time. I didn't want to let him go. For 5 1/2 months I cared for Cal, I was the only one I trusted, and even though I knew my job was done, I had to hold on just a little longer. After a short period, Brad put his hand on my shoulder letting me know they were ready for him. The time has come for me to hand him over. To leave it to God's hands and the surgeon's to make his heart complete. To let FAITH take over.
Surgery was to take 6 hours. 6 hours. 6 hours to stare at the clock and wonder. 6 hours to pace. 6 hours of making small talk when your mind is else where. 6 hours of listening to the waiting room's door open and close (unsure if I wanted it to be the nurse practitioner). 6 hours to pray. 6 hours to think about every complication that could possibly happen. 6 hours of waiting for news that will change your life forever.
At 11:00 a.m. we received an update. The surgeon, Dr. Peter Kouretas, is 75% done. Cal's heart is off the cardiopulmonary bypass (heart and lung) machine and beating on its own.
Thank you Spirits.
Thank you God!
Two more hours passed until the repair was complete. Brad and I were finally able to meet with the surgeon, my forever hero, he delivered nothing short of good news. Cal's heart was on the bypass machine for less then an hour, which is unheard of. Therefore, his body did not go through significant trauma. Since patching the ASD and VSD, the prolapse self-corrected and the aortic valve regurgitation moved from moderate back down to trivial. Best outcome possible. My own heart skipped a few beats in that moment. Even though I knew we weren't in the clear yet, since complications could still arise, I could feel myself breathing just a little bit easier. As the nurses were finishing up with Cal and transferring him to the PICU, we delivered the good news to our family and friends.
When it was time for us to be with our Precious One, one of the doctors walked us to him. When I first laid eyes on Cal an overwhelming amount of pride filled me. She stated "Doesn't he look amazing!?" And he did. He really did. The bravest man I ever met.
I couldn't be ANY prouder.
I couldn't be ANY prouder.
Cal was in the PICU for three days. During that time minor complications took place. It took quite a while for his breathing to stabilize and his oxygen level to reach 100%. Also, it was thought he had fluid forming around his right lung. We were preparing for another surgery to have a third chest tube put in to drain the fluid but it turned out to be a collapsed lung. He lost more blood than what was expected and had to have multiple blood transfusions. There was blood in his urine, as well. However, all things considered he was doing remarkable. The surgeon trusted that he was able to recover completely on his own without any lines to help. So, slowly, they began to remove the tubes and wires. Everyday he got stronger and we were discharged within four days.
As we were packing up our things to come home, I began asking the doctors questions (quite common for me). I am not sure if I had a worried tone in my voice but one of the doctors came up and knelt down beside me as I was sitting with Cal. He gently placed his hand on Cal's heart and said "Your child. He fine. He okay. He normal." That was the first time we have ever heard those words. It sure felt good!
Recovery time at home was 6 weeks.
Cal fought a battle for over 5 months. Every day was a challenge.
And now, he is struggle free.
Our Heart Warrior TRIUMPHED
Post Surgery: Check-ups have moved to once a year. Cal's aortic valve continues to leak slightly, along with his mitral and tricuspid valves, which will be the case throughout his life. It has recently been brought to our attention that he has had aorta dilation since he was 2 to 3 months of age. It currently is of no concern but will be monitored, with a possibility of not being able to play any contact sports. Because of his surgery, his chest caves outward but will flatten as he gets older. They were unable to patch all of the VSD due to being hard to see since there was no blood pumping through the heart at the time of repair. Cal's heart murmur is still present and it is hoped that when he is 3 or 4 years old his own tissue will cover the remainder of the hole and patch. His only restriction is not being able to enlist in the military.
What I once thought as the most devastating news, news that brought countless tears along the way, has now become my greatest treasure in life.
I am honored to be a Heart Mom.
"You were given this life because you were strong enough to live it."