It was Tuesday, January 20, 1998, you, my son, were rushed to UCSF Medical Hospital for an emergency heart surgery procedure. You were only eight weeks young at the time. This is a day I will remember all the days of my life.
Your story begins…
Friday, January 16, 1998… It was a cool January afternoon and you were due for your first “well baby checkup.” You seemed to be growing so nicely. All seemed fine within your curious little world. Dr. Lawrence Mills would be your doctor today, due to our regular family pediatrician being out on this day.
During this standard “two month checkup,” your visit was going well. Your growth was normal, your coloring fine with no abnormalities to be noted. Your first doctor’s visit was nearing its end, and you were overdue for your much needed daily nap. As I packed your baby toys into the diaper bag, I noticed Dr. Mills appeared to have difficulty monitoring your pulse.
A mother’s intuition could not ignore the puzzled and perplexed persona illuminated by Dr. Mills. He explained to me that he detected an inaccurate pulse from your tiny body. When attempting to locate your femoral pulse, there was none detected.
As I tried to overcome my worry, I knew in my heart there was something wrong. Dr. Mills immediately ordered your EKG and X-rays; unable to provide a conclusive reason as to what may be seriously wrong with your tiny heart, until results from these tests were concluded. In that instant, I could not escape the painful memory of your grandfather’s sudden death, your Grandpa Larry….. your namesake. I struggled with all my fears, all the while, trying to remain positive.
After the EKG and X-rays were tediously completed, it was time to play the waiting game. Dr. Mills called me later that same afternoon with the results of the EKG. He was unable to confirm the results of the X-rays, due to Dr. Cooper (your cardiologist) needing to review the inevitable.
Three days had passed; the unavoidable phone call had finally arrived. The test results were not good. I rushed you to Kaiser Hospital in Vallejo, where we met Dr. Cooper. An emergency echo-cardiogram was performed; determining you had a severe Aortic Coarctation. You were in need of immediate care.
Your aortic valve, connecting to your heart’s left ventricle was nearly closed off. Dr. Cooper explained these foreign medical terms to me, illustrating a diagram of your tiny heart, pointing to your severe heart coarctation. I did my best to remain strong.
Precious time could not be wasted as UCSF was awaiting our arrival. I phoned your father and explained what we were now faced with while an ambulance remained on call, but we decided to transport you together as a family. The minutes seemed more like hours.
The Infant Intensive Care Nursery was on the 15th floor. As we entered the elevator, I held you in my trembling arms, gazing into your big brown eyes. I told you I would take your place, if I could, but you just gazed back at me with an innocence so painfully obvious, it hurt.
As we entered the Infant Intensive Care Nursery, doctors, surgeons, nurses, counselors, and staff warmly greeted us. There, I saw a hospital crib with a cardboard tag attached, it read, “Baby Larry.” For an instant, I wanted to turn and run for home. A voice inside my head told me, Larry does not belong here. He should be in HIS room, in HIS crib. I realized I must face reality. This unfortunate matter had to be dealt with.
We all have the capacity to understand life is filled with challenges and faith, like light, should always be simple and unbending.
You were scheduled for surgery the following morning. It seemed as if we received counseling from every member from every different staff. The pediatric cardiologist explained the entire procedure, the anesthesiologist explained the risks, the surgeons reassured us of their success rate and the nurses stayed by your crib, just as I had over the next few crucial days. We felt confident you had the best care possible.
Living out of a suitcase and sleeping on the floor was not a concern as my only focus was you successfully leaping over this next hurdle.
We became friends with other parents from all over the world whose babies were, also, faced with life-threatening conditions. We knew we were not alone.
The atmosphere of the Intensive Care Nursery was authentically united. We shared our hopes, dreams and concerns amongst each other, as if nothing mattered…
And it didn’t.
Wednesday, January 21, 1998. The time had come for you to be taken to the surgery floor. Two cheerful nurses introduced themselves and stated they would be taking you to the 4th floor, the surgery floor. I can still remember the loud silence; absolutely deafening. Our solemn moods screamed an echoing tone as we made our journey to the 4th floor. Corridors with large heavy hospital doors seemed endless when we finally reached the surgery room. As I held you in my arms, you peacefully snuggled inside a warm hospital blanket.
The surgeons discussed the tedious procedure for one final grueling time. Your ribs had to be broken and your lungs would need to be punctured, in order for any chance of a successful surgery. The severe coarctation would be removed and the surgeons would reattach your aortic valve. I knew the ugly steps were inevitable, in order for you to survive. Desperation was evident, longing to awaken from this nightmare and take you back home.
Prior to surgery, monitors were removed from your tiny body, and I held you closer and tighter than I had ever held you before. As I trembled, my tears fells onto your face. I heard the surgeons and my mother gently telling me it was time, but I pretended to be momentarily deaf.
The only solution was to physically remove you from my trembling arms. Your grandmother gently removed you from my arms, lovingly delivering you to the care of the surgeons who would decide your fate.
It was time to go. We exited, what felt like a cold, damp dungeon, as I left the surgeons with one final plea, Please take care of my baby.
An interminable three and a half hours had passed. Your surgery was now over. The surgeons entered the waiting room with smiles of relief. Your surgery went well, but you were not out of the woods yet, Larry. You remained in the Intensive Care Unit for a few days with a breathing tube inserted into your tiny body, until you were strong enough to breathe on your own.
There were several more monitors in place, and you were closely monitored. The next 48 hours would be crucial. You were given morphine and other pain medications; nourished intravenously, as you would awake when the pain seemed unbearable. I was not able to nurse you for several days, nor could I hold you in my arms. The mere sound of my voice was the voice of comfort and food to you. There were moments I was forced to leave your side when your sudden movements became jolts of excitement upon hearing my voice. I wanted you to know I was there, but that meant risking you pulling the tubes and monitor hook-ups from your bruised body.
Soon, you were able to breathe on your own. This was a monumental moment for us all. The ventilator was removed, and you were transported back to the 15th floor, the Intensive Care Nursery (ICN).
When you arrived, the nurses warmly greeted you back. I really do believe they missed you, too. Even though I had not been outside in five days, in my head…the sun was shining, the birds were singing and all was right with the world.
You were released from UCSF that Sunday. Your blood pressure was dangerously high and remained high throughout that year. You were in a considerable amount of pain from the trauma but blood pressure and pain medications were prescribed by the ICN pediatricians. A check-up was scheduled the following day with Dr. Mills back home in Napa.
I recall the UCSF surgeons smiling; stating your early release of five days after heart surgery broke the old UCSF record. The average heart patient remains in ICU a few more days. I politely laughed as I sincerely could care less about breaking any records. You were home.
The next four years were rough for you with a weakened immune system, as you caught everything under the sun; bronchitis, pneumonia, feverall convulsions and more.
The lessons of life were once again authentically thrown in front of my face. Life is short. I stopped worrying about the small things that stole my joy. I found my peace again in what matters the most. I now believe that if worrying did any good, I’d be the first to do it.
The following year we attended the annual UCSF Halloween party dedicated to past UCSF pediatric patients who overcame life-threatening illnesses. We attended these celebrations of life for the next three years after your heart surgery.
There were always many children at the celebration that served as a reminder of how precious life is and that you are never alone. I watched in wonderment at the children of all ages and ethnicity filled with guiltless innocence.
There is a lesson to be learned from every struggle, if you allow yourself to see past the misery. Your challenges in life will never end. You merely learn how to overcome the misery. I believe we all have been given an opportunity to share a challenge with others, who may have lost hope or lost their way.
You are never alone if you possess hope. Unfortunately, there will always be someone less fortunate than you. Remember to count your blessings and reach out to others when they are in need of your hand, but never stay down for too long. For then, it is more difficult to get back up.
You are now a healthy 24-year-old boy with a voice and opinion uniquely your own.
Never allow others to destroy your hope. Be you. Do you. Negativity will destroy your vision, your goals, and your dreams.
Every day is a gift. Treat life kindly, even when it knocks you down. Always get back up.
May guardian angels protect you wherever you may roam.
I love you,
Mom
