Monday, May 30, 2011

Happiness is...

Looking forward to something so much that time stands still. We are currently counting the days until our next ultrasound – 14 left to be exact. This ultrasound will tell us the gender of the baby, which is secondary to some of the other big questions we will have answered. We will learn if the baby’s anatomy (inside and out) is appropriate for the gestational age. In other words – does the heart have all the chambers and plumbing necessary to function properly and are all the other organs in working order and in their right location! 

I have been playing tug of war with the hands of time since the appointment was scheduled. I am simultaneously excited and anxious. Worried yet cautiously optimistic. I want to hear the results NOW, however I hesitate to be overly elated in advance. This is the Ying and the Yang of this pregnancy for me. I no longer take a healthy baby for granted. Regardless of all the prayers I have said, all the right things I have done, all the soft cheeses I have turned down, extra naps I have taken, I realize that the health of our baby is not fully determined by my actions. It is a mind-numbingly helpless feeling.  I know that I have to continue to take good care of myself and my unborn child to give him/ her the best start in life. At the same time a lot of uncertainties are left up to genetics, chance, good luck, bad luck, dumb luck and God’s will. Whichever way you look at it – Que sera, sera! (What will be, will be)! 

When faced with a challenge as a little girl my mom would always make me take a step back from the situation by asking me “What’s the worst that can happen?”  I have recently asked myself that very question while I lie awake in the middle of the night due to pregnancy-induced insomnia (aka excessive worrying).  My answer to this very question is incredibly comforting, and the only thing keeping me sane as I wait for the next two weeks to pass.

What is the worst that can happen? Worst-case scenario is that God grants us a child who will rely on us for its comfort, health, happiness and wellbeing. But wait, that is every child!!! Every little miracle born NEEDS its parents (biological, adoptive, plural, singular, two moms, two dads, two sets of moms and dads, grandparents) regardless of the family situation every child needs someone to love and nurture him/ her. Some children may just need a little more attention in one way or another! We CAN do that! We HAVE done that! We ARE doing that! All of a sudden worst-case scenario does not seem so overwhelming! Regardless of the results we get in 14 short days, in less than 336 hours, we WILL love our child and he/ she WILL complete our family – just like each of our two boys do every single day!  

(I believe a few minutes have passed since I started writing this... a few minutes closer... and I continue to happily wait!)

Thursday, May 26, 2011

Why We HEART Happiness! Jordan's Story

2008 was a tumultuous year for many. The stock market and real estate markets tumbled. Aggregating all the financial losses sustained worldwide would never come close to the great loss our family suffered. We lost my granddad and dad unexpectedly within 6 weeks of each other. However, we saw light at the end of the tunnel – baby Jordan was due in late November 2008. His arrival would mark the turning of the bad luck tide for our family. Everyone put a lot of hope in his birth. We needed the breath of fresh air that only a new baby can provide. 

Jordan Douglas was born on November 24th at a healthy 9 lbs 7 oz. He was beautiful, calm, sweet, and ate like a champ. We were discharged on Thanksgiving morning, which was just another sign that our bundle of joy was the complete package of hope and new beginnings. On day two of our happy homecoming Jordan felt a little too warm for comfort. Our baby had a fever, a low-grade one, but a fever nonetheless. I quickly learned that infants with fevers earn a direct trip to the Pediatric ER.  One lumbar puncture later we were faced with the first doctor/ parent meeting of many to come. Jordan apparently had viral meningitis and was immediately admitted to the Pediatric ICU (“PICU”). He was at St. Mary’s PICU for eight long days with mama at his bedside, while dada was at home taking care of big brother Jacob. After yet another lumbar puncture the doctors deemed that his infection was under control and was no longer a threat to his life, so a second hospital discharge was in our future.

We were thrilled to once again have our little family reunited. Life moved in slow-motion as we adjusted to being a four member family. But even this quiet bliss would come to a halt two days later, when Jordan stopped feeding at 9:00pm and refused to eat for the rest of the night. The morning of December 5th Jordan went back to the Pediatrician’s office so he could listen to his lungs. Jordan had started breathing slightly labored over the past day, and in my hormonal postnatal fog I thought that he might have caught an upper-respiratory bug at the hospital. The Pediatrician took one glance at him, had the nurse call 911 and grabbed a tank of oxygen in his storage room. We were rushed by ambulance back to St. Mary’s Medical Center where they put him on a respirator. An x-ray revealed that his heart was enlarged, which was more critical and complex than they felt comfortable treating there. We were airlifted to Jackson Memorial Hospital at the University of Miami later that evening. I flew with Jordan in the helicopter, while Paul raced down I-95 with my suitcase packed for an undetermined amount of time.

A crystal ball at that crucial time would have told us that we would spend the next six weeks in the PICU. I moved into the Ronald McDonald house on campus, but sat bedside by Jordan all day and most nights. Paul and Jacob held down the home front and came down to visit us every chance they got. Jordan was on the roller coaster ride of his life, some days he was cruising along only to be caught off guard by a huge dip in the track. There were days and nights when the nurses and doctors cautiously celebrated his small victories, but reminded us that our little boy was very sick. Jordan’s chart grew thicker each day and included big words like Viral Myocarditis, Dilated Cardiomyopathy, Pulmonary Hypertension, Pulmonary Hemorrhage, Endocarditis, Primary Immune Deficiency, and Yeast Sepsis. He was intubated for four weeks, two of those weeks spent in a medically induced coma on paralytic medications, had a biopsy taken of his heart, was the topic of conversation at the weekly PICU conferences, but for each passing day he was loved more and never left alone in the hospital. Prayers from around the globe spanning across every religion were sent to Jordan. Congregations in churches and temples gathered and prayed for him, friends and family mentioned his name in their prayers at night – and throughout the day for added effect. I specifically recall at least five occasions where I begged Jordan to hang in there, promising him that life would be beautiful and special if he could only pull through that night. He proved to be a fighter and in the end a winner. 

Jordan had his third and final hospital homecoming a few days before his two-month birthday.  He was discharged on a medication schedule that gave me a pharmaceutical crash course. Jordan required four hours of anti-fungal infusions daily for six weeks, weekly antibody infusions for six months and daily medications seven times around the clock. His social calendar included ten different specialists, most of them located at the University of Miami. Jordan and I spent countless hours in doctors’ offices, which we turned into play and special mama and Jordan time.

We all learned that “knowledge is power”; we followed instructions, prescriptions and recommendations. We learned medical terms and conditions and we made life-long friends throughout the heart community. We embraced our life and adjusted to "the new normal". Days turned into weeks, weeks turned into months, and now we find ourselves over two years out from Jordan’s diagnosis. Jordan is a thriving, fun-loving and charming toddler. He has no mental or physical deficits and he adores his brother, mama and dada. The world did NOT come to a screeching halt the day Jordan got sick, life did not become less enjoyable after his diagnosis, on the contrary we are now a stronger family than before. Our two boys are learning to live life to its fullest, and we are all finding HAPPINESS in even the smallest and simplest things! WE HEART HAPPINESS!