Health & Wellness Motherhood

My Sister’s 1 in 5 Story: Her Heart Hero Baby

1 in 5 suffer from a mental illness. I am 1 in 5. And so is my sister, Tilly.

This is her story.

“In July of 2003, I was 21 years old and living in Virginia Beach, VA.  My now ex-husband, Anthony, was stationed at NAS Oceana at the time while serving in the US Navy.  We had a 4 month old son, Isaiah.  Anthony was being deployed on the USS Enterprise for six months to the eastern countries and since we had no family in Virginia, we decided it would be best for Isaiah and me to travel to visit my family in Bedford, TX, which is a suburb between Dallas and Fort Worth.  A week or two after arriving in Texas with Isaiah, I discovered I was expecting another baby.  I was surprised and ecstatic about having another child, and was extremely grateful I would have my parents and sister by my side for this pregnancy.  As Anthony’s ship deployed from Florida, he called me one last time and I was able to share the news with him.

Since I was going to be staying in Texas for a few months, I established myself as a patient with an OB/GYN provider in the nearby town of Grapevine, TX. At my monthly prenatal check-ups, my baby’s development appeared healthy and normal.  I remember having my close to my fourth month of pregnancy.  During this ultrasound, my doctor believed I was having a boy but was not 100% certain.  By this time my belly was starting to show.  I loved cradling my stomach, even before I began showing. Towards the end of October 2003, I decided to take Isaiah on a trip from Texas to visit Anthony’s family in Dixon, IL. While in Illinois, I began experiencing stomach pain followed by a moderate flow of blood.  My in-laws rushed me to the local hospital where another ultrasound was performed to check my baby’s condition.  Thankfully, everything looked okay and I was discharged within a few hours.  During the ultrasound, the doctor believed I was having a girl, but again, he wasn’t positive. In December 2003, Isaiah and I traveled back to Bedford to be with my family for a couple more months before going back to Virginia.  In the middle of January 2004, I had one more check-up with my OB doctor before going home to Virginia.  Around Valentine’s Day, I traveled back to Virginia Beach to have time to establish myself with a new OB doctor and to prepare for Anthony’s arrival from deployment.

After Anthony returned from deployment I had my first check-up with my new OB.  By this time, we had decided on a boy name and a girl name.  I think this was towards the end of March 2004.  As my doctor and I were finishing up my appointment, she asked me if I knew what our child’s gender was.  I explained to her that I was initially told the baby was a boy and then a girl, but neither of the doctors who examined me by ultrasound were completely sure.  She asked us if we wanted her to try to look at the baby via ultrasound once more to see if he or she was a boy or girl and we were overjoyed!  The ultrasound technician was immediately able to tell we were in fact having a baby boy.  Isaiah was going to have a little brother to play and grow up with, and his name would be Adrian Vasquez.  The ultrasound technician then asked if I would mind her scanning over our son because she had never examined our baby herself.  I told her that was perfectly fine…and I’m so relieved I did.  As she performed a full ultrasound on him, the exam turned into a forty minute process.  Isaiah became fussy and bored so Anthony took him on a walk outside in his stroller.  Once Anthony took Isaiah out of the room, I was able to pay a little more attention to what the technician was focusing on…my baby’s heart.  Finally, I asked her if everything was okay and she stopped the ultrasound, looked me in the eyes for a split second, looked down, then told me she would be right back with me and left the room.  I could feel tiny beads of sweat forming on my face, back, and palms of my hands.  At that moment I started talking to God and asking Him for strength, comfort, and for my son to please be okay.  I cradled my stomach and waited for the technician’s return.

She entered the exam room with my doctor, who asked me to walk with her to her office, which was down the hallway and only a few feet away from the ultrasound exam room.  As I walked, those few steps to her office seemed long.  I remember my feet feeling like they were turning into heavy plates of stone with each step I took.  My feet, then legs became heavier and heavier.  I looked out of the second floor hallway window and saw Anthony pushing Isaiah in his stroller outside.  When I reached my doctor’s office, she asked me to sit down.  When I sat down, my body kind of collapsed into the chair.  I knew this was not going to be good news.  My heart sank as I cradled my stomach and asked God to help me endure what was going to be said.  “I’m sorry to tell you this honey, but there is something wrong with your baby’s heart.” My body began to shake and I felt cold. My mind started racing and I could hear my own heartbeat clearly.  I know I took my cell phone out of my purse immediately, but to this day I cannot recall whether I called Anthony or if the doctor spoke to him.  The next moment I remember is sitting in a chair in a completely different hallway with a nurse, the ultrasound technician, my doctor, Anthony, and Isaiah. A receptionist was calling a high risk maternity doctor in Norfolk, VA.  She was requesting that I be transferred to their care as soon as possible for an urgent appointment.  My due date was only four weeks away.  I felt as if I was living in a nightmare that I could not awake from.

I don’t remember going home after that life changing appointment, nor do I remember the few days thereafter, but my mother and Anthony both say Anthony called my parents the day we found out the devastating news.  He explained to my mom and dad that I was so shocked and in so much emotional and mental pain that I couldn’t or wouldn’t speak a single word. All I could do was cry.  I cried.  I screamed.  I prayed. I also developed an insomnia I had never experienced before.  Within a day or two, my mom arrived in Virginia at short notice to be with me. I needed my mother.  I needed her to tell me everything was going to be okay.

At the beginning of April 2004, I was in Norfolk at the EVMS Maternal-Fetal Medicine facility with Anthony and my mom by my side.  The doctor sat us down to discuss what he was able to diagnose from my ultrasound performed at my previous doctor’s office in Virginia Beach. He knew our son had a large ventricular septal defect and transposition of the great arteries, but unfortunately, he strongly felt there were more congenital heart defects that needed to be confirmed and diagnosed.  I felt my body shaking and cold sweat beads began to form.  I remember someone was rubbing my back and someone rubbing my head. My doctor ordered a stat fetal echocardiogram for further detail and diagnoses.  After he viewed the echocardiogram, he sat us down once again in a private consultation room.  Once again, I heard the beginning of a devastating sentence…”unfortunately, there are further defects in your child’s heart.”  He then began to inform us Adrian also had double outlet right ventricle, patent ductus arteriosus, and pulmonary stenosis.  My body went through physical shock and my mind rapidly faded.  I asked him if my baby was okay at this very moment. He assured me that as long as Adrian was in my womb, he would be fine, but then went on to say that once I gave birth to him there would be no guarantees he would survive due to the severity of his defects.  After those words were spoken, my doctor’s voice began to sound as if he was speaking to us through a long funnel-type device until his words finally sounded extremely muffled to me.  I looked over at my mom, then over at Anthony.  Both had their mouths covered with one of their hands and their eyes were wide opened as if they had seen a ghost.  Their mouths began moving, but my mind was not allowing me to hear a word they or my doctor were saying.  From the day my son was initially diagnosed with two heart defects to the day I met with my new high risk doctor, I tried understanding what was exactly wrong with my unborn child and what could possibly be done to help him survive, but I couldn’t comprehend it all.  At that time, I knew nothing more about the heart’s anatomy than that it was a human being’s life line.  As a mother new to all of this, the only thing I could think about was the fact that my baby’s heart was extremely and catastrophically ill and he may not make it past his birth.  With all of the heartache, insomnia, anxiety, and stress I was experiencing, I quickly developed high blood pressure readings.  After consistent high blood pressure readings, my doctor decided to induce labor a week later; two weeks before my due date.

On April 18, 2004, I was admitted to Sentara Hospital, which was next door to Norfolk’s Children’s Hospital of the Kings Daughters, where Adrian would be transferred to once born.  As the sun began rising on April 19, 2004, my labor contractions were becoming intense. I remember feeling…torn in half emotionally.  I knew how I felt when I was in labor with Isaiah…happy, excited, and just a little nervous because I was going to be a first time mommy.  That was the way I craved to feel this time, but I honestly couldn’t.  Physically, mentally, and emotionally I was distraught, terrified, anxious, and heartbroken for my baby boy.  Around noon, my doctor directed me to begin pushing.  By my side was my doctor, nurse, my mom, and Anthony.  Behind them was Adrian’s medical team of about six or seven professionals, awaiting his arrival. When I began bearing down, my mind would not stop recalling what my high risk OB doctor told me just a week prior…as long as Adrian was inside my womb, he would be fine, but once he is born there are no guarantees.  I felt shattered.  What if my son dies when I deliver him?  My labor pushes were very hesitant, but my body was giving me no choice. He was going to be born regardless of what my brain or heart feared.  As soon as my doctor pulled Adrian from my body, I begged him to please let me see my baby.  The doctor held him up for one second then took him over to his medical team by my bedside and closed the curtain between us.  I was exhausted but tried to hear and comprehend as much as I could.  I heard Adrian’s medical team having intense and quick-paced conversations, but could not understand their medical terminology.  I heard machines beeping and buzzing, and there were swooshing noises…maybe oxygen being given?  As much as all of the chaos scared me, there was one absent sound that made me crumble into so many pieces in numerous ways…Adrian.  Not a single cry, whimper, or moan.  I heard nothing from my baby.  The next thing I recall was the nurse opening the curtain that stood between us with my son and his medical team no longer there.  His part of the room was empty.  As I lied there feeling emotionally empty, I held my stomach with my arms like I did when Adrian was in my womb.  He was no longer there.  I could not protect him with my body anymore or hold him.  Guilt and anger towards myself immediately flooded my mind because I pushed him from my body.  His sickness, his life threatening disease he had was not something I would be able to simply kiss and make better.  It wasn’t something I could put a band aid on or get a medication for to make him heal. His severe congenital heart disease was out of my control and as a mother, it was extremely brutal to endure and accept.  Anthony and my mom informed me that the doctors were able to stabilize Adrian long enough to transport him through the skywalk to the CHKD hospital next door. They told me he was 8 pounds 9 ounces, was plump, and beautiful.  I closed my eyes and pictured him, my sweet Adrian.

Shortly after my doctor and nurse cleaned me up, a pediatric cardiac nurse came into the delivery room to update us on Adrian’s condition.  She said just a few minutes before heading our way, she was able to quickly see Adrian as he was being transported in his “limo”, which was Adrian’s portable incubator.  She assured us he was receiving the upmost care and as soon as the staff got him stabilized and situated in the neonatal intensive care unit, or the NICU, we would be able to go see him.  At that point, it didn’t matter to me how weak or in pain I felt. I got out of the hospital bed, put my shoes on and requested a wheelchair because as soon as we were allowed to see him my mom and Anthony would be able to take me there as quickly as possible.  Around 8:00 p.m. that evening, the NICU doctors and staff notified us that Adrian was settled.  I got into my wheelchair and we rushed through the skywalk to CHKD.  When we entered the large, dark, and quiet NICU, I saw so many precious and tiny babies in incubators.  Parents were wearing gowns, gloves, and masks as they sat by their babies’ bedsides.  The nurse led us to Adrian, who was toward the middle of the room.  The NICU nurses thought he was such a cute and fluffy baby. The staff referred to him as the “little peanut” because he was shaped like one.  There he laid with a full head of thick, dark brown hair and chubby little cheeks.  He was resting in an open incubator with a ventilator tube inserted into his mouth. He also had small oxygen tubes placed in each nostril.  He was receiving several medications via IVs and was completely sedated.  I wasn’t allowed to touch him anywhere except for his forehead and hair because of the many tubes, probes, and IVs all over his body. Within myself, I was terrified, overwhelmed, broken, and helpless as I looked at my son, but I felt God was carrying me and helping me to stay on my feet.  I knew this because even today, I do not know how I was able to stand there for as long as I did, adoring my newborn child covered in an overwhelming amount of medical equipment and devices; lifeless with a machine breathing for him.  That was my baby lying there.  Even though I was not allowed to hold him, simply caressing his forehead and hair helped me to feel whole again.

I believe it was the next day when the NICU doctor told us that Adrian had a large amount of fluid in his lungs that needed to clear up as soon as possible so the pediatric cardiology surgeon could perform his first heart surgery. The NICU doctor was concerned that with as much fluid as he had in his lungs, it would take a long time to clear them. Within three or four days, his lungs were miraculously cleared. On the sixth day after his birth, we discussed and agreed to Adrian’s first heart surgery.  I will always remember how heavy my hand felt as I signed consent form after consent form for surgery, acknowledging the risks and basically stating “I understand if my child does not live”.  That night, I had the hospital’s chaplain meet Anthony and I to have Adrian baptized in the NICU.  She spoke from her heart and prayed powerfully with us, asking for God’s comfort, strength, and faith.  We prayed God’s will be done and kissed our baby goodnight.  I can’t remember what I felt or if I even slept that night, but I know I prayed.  God had a protective shield around me, considering I entered the NICU early the next morning still a sane person.

On day eight he would undergo his first surgery.  After being with Adrian for a few minutes and talking to him, the nurse asked me something that took my breath away.  “Would you like to hold your baby?”  The fear of his fragileness and of the machines, tubes, IVs, and probes left me in an instant.  “Yes! I would love to!” is what I cried to her.  She dressed me in a hospital gown, sat me in a rocking chair, and very carefully removed Adrian from his incubator and placed him in my arms.  That moment was magical and a moment I will always remember and cherish.  The first thing I did was look up above and thank God as tears poured down my face. Then, for the first time after five days, I kissed my son on his temple while in my arms.  Although I got to hold him for only a few short minutes, I knew being able to hold him and still have him with me was an extraordinary blessing. About an hour later, we walked Adrian to surgery with nurses and anesthesiologists.  I kissed his cheek and told him I would be waiting for him. As he was wheeled away from me in his newborn bed into the OR’s restricted area, I fell apart emotionally and physically.  I was escorted to the waiting room but I cannot remember by who.  Anthony? Medical staff? I can’t recall.  Dr. Glen Barnhart was Adrian’s heart surgeon at CHKD.  He spoke with us as Adrian was being prepped in the OR.  He would be having a central shunt placed due to severe pulmonary stenosis.  The shunt would slant between his aorta and his pulmonary artery.  Before Dr. Barnhart walked away, he shook our hands.  When he shook my hand, I clearly remember thinking about the fact that my fragile son’s heart and life was going to be in the exact hand I was holding. There in not a feeling in the world that I can compare that to.  I don’t remember exactly how long Adrian’s surgery was, but I do remember it feeling like a lifetime.  Dr. Barnhart met with us afterwards and informed us the procedure went well, but it would be a few hours before we could see Adrian due to him being cleaned up in the OR, then transferring and getting settled into the pediatric ICU, or PICU.  Dr. Barnhart also informed us Adrian would not look like he did prior to surgery. He would be swollen and his new chest incision would be a lot to take in emotionally.  He assured us Adrian wasn’t feeling any pain because he would be completely sedated, on the ventilator, and receiving large amounts of potent pain medication through IVs.  I wanted to see Adrian immediately, so as soon as we were allowed, I practically ran into the PICU doors, thoroughly washed my hands, and was led to my baby. When I arrived at his bedside, even though I was forewarned of his appearance, I still was in complete shock. I felt as if someone had kicked me straight to the chest as hard as humanly possible.  My body shook from head to toe.  My head had a very warm sensation that slowly crept from the crown, down to my forehead and ears, to my cheeks, and down my neck.  His entire face and eyelids were extremely swollen, as were his extremities.  Then there was his large and fresh incision down the middle of his small baby chest. His arms were laid out beside him and he had a couple new IVs added to him.  There was a large medical rack just a couple of feet behind him filled with bags of fluids and medications that were running through IVs to him.  There was also a large chest tube draining extra bloody fluid from his body into a bag with measurements on it.  I was beyond grateful that he made it through surgery and with no complications, but at the same time I felt helpless.  I couldn’t make any of this go away or turn back time and have him safe in my womb again.  I couldn’t even hold my baby to comfort him.  I stood right there by my son though, as close as I could get and caressed his forehead.  I spoke to him for hours.  I wouldn’t lay down to rest, but fell asleep with my head on his bed.  I sang “You Are My Sunshine” to him quietly.  Even today, I can’t get through “please don’t take my sunshine away” without tears forming or developing a huge lump in my throat.

Over the next few days, Adrian’s oxygen saturation levels began decreasing slowly. An echocardiogram was performed and the images showed his shunt was narrowing.  At the beginning of May, Adrian underwent his first heart catheterization, where a stent was placed in his ductus arteriosus to help resolve the narrowing of his shunt. After being monitored for a few days in the PICU, Adrian graduated to a regular hospital room.  He was no longer on the ventilator and was down to only requiring a single IV, vital probes, oxygen, and a feeding tube.  Since he was born I had been pumping my breast milk and the hospital was freezing it for me, so he was now being fed my breast milk through his feeding tube.  After staying in a regular room for about a day, Adrian took another huge step in progress. For the first time, I held him and fed him my breast milk through a bottle!  He still had his feeding tube in place, but I was able to bottle feed him once or twice a day.  I will never forget when one day I was holding him during one of his feedings, and his oxygen saturations climbed to 100%!  Normally, his O2 saturations ranged between 95% and 98%, but the doctors and nurses were amazed at this intermittent jump while in my arms. Writing about that moment today still brings so much joy and amazement to my heart.  Days went by, and Adrian progressed little by little.  I would look at him in his little brown eyes and tell him he was my little but big hero.  Finally, after several weeks of being in the hospital, the day came for him to be discharged.  Before being released, there was something Anthony and I had to learn to do first; how to insert and remove his feeding tube, just in case Adrian would one day accidentally remove it from his body.  He had to remain on the feeding tube because his energy was very low and he didn’t always have the energy to remain awake to eat or the energy to drink from a bottle.  The nurse taught us how to route the small, long tube into his nostril, down his throat, and into his stomach.  Then she showed us how to use a stethoscope to check the sound in his abdomen area to make sure the tube was routed into his stomach and not his lung.  She also informed us that we would probably be able to tell if the tube was going towards his lung before it even reached it because he would start coughing and gasping for air.  I was so fearful, but knew it had to be done so I pushed through it and learned for Adrian.  We were also warned that his heart rate had to stay within a certain range; not too high and not too low.  This meant Adrian could not become too upset or his oxygen saturation levels could drop and he could go into heart failure.  While I was very excited to finally take my baby home, I was also honestly afraid.  Yes, he would finally come home, but this also meant he would no longer be under the 24/7 monitoring of medical professionals.  His daily life would now be in Anthony’s and my hands.  What made this joyous occasion even scarier for me was the fact that due to the ventilator tube being placed and removed from his mouth repeatedly and for long durations at a time, Adrian’s vocal cords were temporarily paralyzed.  This meant if he cried we wouldn’t hear him.  He could be fully crying with a red face and a heavy flow of tears, but without a single noise to alert us.  We would only know by seeing him.  Thankfully, they were discharging him with a portable heart monitor so we could monitor his heart rate.  Over the time period of his hospital stay, I also educated myself as much as possible by asking the doctors and nurses questions about his heart’s anatomy, what his defects meant, how they affected him, and how his several daily medications helped him.  I was also very observant of what the medical team did when around him.

After signing the discharge paperwork and being escorted out of the hospital, we excitedly but fearfully buckled Adrian into his car seat and drove home.  I sat in the backseat so I could watch him and called my mom.  She clearly remembers hearing joy and fear in my voice, but assured me Adrian had many guardian angels around him.  My baby was finally home.

Having Adrian home was amazing.  Slowly but surely, I became comfortable with his care and my confidence increased over time.  I was always on guard though.  Sleep was very rare since I couldn’t hear him cry due to his vocal cords.  I wanted to watch him at all times, day in and day out. When he cried, Anthony or I would pick him up immediately and comfort him.  Needless to say he became quite spoiled and demanding, but that was expected and it was okay.  Isaiah was only 1 at that time and watched Adrian get upset then get picked up, so he began doing the same thing and expecting the same response from us.  He was too young to understand why we responded the way we did to Adrian and we didn’t want Isaiah feeling Adrian was our favorite or more loved, so Isaiah became very spoiled as well.  It was really hard on us, but to me, life was too precious and wasn’t something I could ever take for granted.  Life was a blessing…a gift.

Unfortunately, due to only being able to strictly pump my breast milk instead of feeding Adrian directly from the breast, my milk production decreased then completely stopped.  Thankfully, he transitioned to drinking formula without trouble.  I enjoyed and thanked God for each moment, each hour, and each day.  In the back of my mind I knew Adrian’s good health wasn’t permanent.  His health was, and still is, extremely hard to not think about.  What stood ahead, and still stands ahead comes to my mind every day, several times a day.  The summer of 2004 graced by peacefully.  Adrian and Isaiah had so much family that came all the way to Virginia from Illinois, Texas, Hawaii, and Connecticut to meet them and spend time with us all.  Our nickname for him was ‘Peanut’ because that is what his NICU nurses referred to him as, and the name fit him perfectly.

At the beginning of August, Adrian was admitted back into CHKD due to acute cyanosis, which is where the skin begins to turn purple or blue due to having low oxygen saturations.  His abdomen also began to swell.  His cardiologist ordered another heart catheterization and results showed his shunt was obstructed again.  During the heart catheterization, another stent was inserted again to open up the shunt. After a few days in the hospital, Adrian was discharged.  At his cardiology checkup thereafter, his cardiologist and cardiac surgeon decided he was big enough to undergo the open heart surgery they had planned for him since birth, but was too little for.  This open heart surgery would correct his defects temporarily and he wouldn’t require another surgery for at least another two to four years.  The procedure was called the Rastelli procedure. This is where a patch from his left ventricle to the aorta is placed to direct oxygenated blood and also closes his large ventricular septal defect.  His right ventricle to his pulmonary artery would also be grafted to allow oxygen depleted blood to travel to his lungs to be oxygenated again.  His temporary central shunt would also be removed. In mid-September, Adrian underwent his second heart surgery at 5 months old.  My parents, in-laws, brother, and sister-in-law went to Virginia to be with us and to be there for Adrian.  This surgery would be a much more complicated and higher-risk surgery than the previous one. The four to five hour surgery seemed like a lifetime, and Adrian was placed on the bypass machine this time.  My memory of the waiting period is unclear, but I know prayers were constantly being said and there was a large amount of silence as we all waited.  Relief overcame my body when his surgeon, Dr. Barnhart, walked into the waiting room and smiled at us.  The surgery went smoothly and Adrian was getting cleaned up then transferred to the PICU.  Even though I had already experienced what he would look like after surgery, seeing him swollen, lifeless, hooked up to numerous machines, and with an even larger incision hit me like a power kick to the heart again.  All I could think about was how just that very morning, Adrian had been smiling at me and making his adorable faces.  Now, there he was again…no smile and without his dark brown eyes open and watching my every move when awake.  Lifeless.  Helpless. Fragile.  Clinging to life.  It seemed even more difficult this time around.  I think this was because I had been with him every single hour of every single day for five months by then and had fallen even more in love with him with each day that passed.  My knees buckled at the sight of him and was once again helped to his bedside.  I wanted his precious eyes to open.  I wanted to see him smile.  I wanted to cradle him in my arms again and rock him while singing “You Are My Sunshine”.  For now, all I could do was caress his forehead, the only part of his body free of tubes, probes, and IVs. During this hospitalization, Adrian developed numerous complications neurologically, gastro-intestinally, and fought many infections.  His body was attacked with one problem after another.  One evening, the worst sentence was spoken to me as a mother.  “Your son is in his last hours of life.”  More was said by his cardiologist after that, but I can’t remember anything else.  I didn’t faint, but my body collapsed and a chair was brought for me to sit in by his PICU bed.  I looked at my poor baby, who was so thin from all of the weight he lost due to being ill, and his body was a grayish color.  I remember asking his cardiologist if I should request a chaplain and contact our families.  His answer…”yes.”  Anthony made the phone calls and I contacted the hospital’s chaplain.  I know family arrived but I don’t remember who exactly was able to come at such quick notice.  The chaplain anointed Adrian in the middle of the night.  I was saying goodbye to my baby and making sure he was comfortable, caressed, loved, and ready…to go Home.  I prayed over him and cried helplessly.  I spoke to him and sang to him just as I did when he was at home with me.  I lived that entire night from one second to the next and never let go of his tiny hand. Seconds slowly turned into minutes, and minutes turned into hours.  The sun began to rise outside of the PICU windows, and Adrian was still with me. He was unconscious, but he was fighting inside.  I could feel his resilience and his strength.  As the hours went by, Adrian’s color began to return to normal.  I had been awake for so long, with little cat naps here and there, that I could no longer distinguish which day was which anymore, but his eyes opened, he began breathing again on his own, and his smile…I saw him smile again.  His doctors could not explain how he survived and I didn’t ask.  I was grateful and thankful.  My baby made it.

Thankfully, in mid-October Adrian was discharged home just in time for his first fall and winter holidays.  He had also regained his voice and for the first time ever, we heard him coo, laugh, and cry.  With all of the life threatening complications he had faced, it was very clear that Adrian was a true walking miracle.  When a doctor tells you they do not have a medical explanation as to how your child survived what he or she did, that speaks volumes.  At the beginning of January 2005, Anthony was sent on a military assignment to the west coast for two or three months.  Again, since I was a stay at home mother, we both decided it was best for me to travel to Texas to be with my family during his absence. Before traveling to Texas, I wanted to obtain medical clearance from his pediatrician and cardiologist.  After he was examined by both, they cleared him to travel to Texas and believed he would be fine being away from his medical doctors for two months.  In mid-January, Isaiah, Adrian and I traveled to Euless, Texas to stay with my parents. Shortly thereafter, I noticed Adrian started seeming like he was constantly hungry and his bowel movements were becoming less and less, then stopped.  After 24 hours of no bowel movements, I took him to a nearby hospital to have him evaluated since he didn’t have a pediatrician or cardiologist in Texas. He was diagnosed with being constipated and I was given a name of an over-the-counter suppository to buy for him. I tried this medication but the next day came and he still had not had a bowel movement.  I decided to take him to Cooks Children’s Medical Center in Fort Worth and he was once again diagnosed with constipation.  The next day, I called Tricare and asked them to refer Adrian to a Tricare provider in the Hurst-Euless-Bedford area.  They referred him to Dr. Darryl Steele.  I thank God every day for this doctor.  He said there was much more wrong with Adrian than constipation. He feared his body was retaining water and beginning to bloat due to heart failure.  He was going to put in a referral to a local cardiologist the next day, which would be Valentine’s Day.

On February 14, 2005, Adrian was playing in his walker at my parents’ house when he suddenly slumped over and collapsed.  I immediately called 911, then my dad because he worked a block away from the house.  The ambulance arrived quickly and my dad pulled in right behind them.  My dad took care of Isaiah as I rode with Adrian to the hospital in the ambulance.  I had never been in an ambulance before, but remember nothing more than the sound of its sirens the entire way to the hospital.  Adrian regained consciousness and seemed to be stable once we arrived at Cooks Children’s Medical Center, but I knew this wasn’t just some sort of a small episode. In my heart, I knew this was God’s way of telling me to not give up and to speak for my baby.  He needed to be thoroughly examined by a cardiologist as soon as possible.  My mom met me at the hospital and stayed with me throughout the entire ER consultation. I explained to the doctor and triage nurse that Adrian had severe congenital heart disease, told them what his defects were, and explained his complications after his last surgery.  I also explained he didn’t have a cardiologist in Texas because we were temporarily visiting my family while his dad was on a military assignment in Nevada.  With all of that being said, the ER doctor still insisted Adrian was simply constipated. By this point I was desperate.  I begged him to please allow my son to be admitted and evaluated by a cardiologist.  I knew by my own motherly instinct that this was much more severe and complicated than the doctor was thinking.  My mom could also feel the severity and desperation for her grandson.  The ER doctor’s response was “well, if you want us to keep him overnight, feed him and change his diapers for you, then I’ll admit him.”  As infuriated as I was by his comment, my mom and I remained calm.  I didn’t care what he thought of me.  I begged him once more to please just admit him and he did.

That evening Adrian was settled in a hospital room and a pediatric cardiologist came in to examine him.  He didn’t say what he thought the problem was, but he ordered an echocardiogram and some lab work.  After he reviewed all of the results late that night, he confirmed that Adrian was in fact in severe heart failure.  The right side of his heart was extremely engorged with back-flowed blood in his right ventricle and the left side of his heart had collapsed due to how hard his right side was working.  The cardiologist recommended I contact Anthony because Adrian would be having to undergo an emergency open heart surgery.  I believe Anthony arrived in the middle of the night by an emergency military flight and by the next morning, we were meeting with the pediatric cardiac surgeon who would be operating on Adrian.  We were terrified because Adrian had such a complicated case and he had never been treated by this hospital before.  The surgeon’s name was Dr. Eldad Erez and he was from Israel. He explained to us that Adrian’s tricuspid valve, which is the valve between his right atrium and right ventricle, was not opening and closing as it should.  Instead, it was remaining open and the blood was regurgitating into his right ventricle.  Because of the estimated size of Adrian’s swollen heart, Dr. Erez felt the regurgitation was going on for at least a few weeks.  He reviewed the risks and complications of the procedure he would be performing on our baby’s very sick heart.  He also informed us if the surgery was not performed, then Adrian would not survive any more than two or three days longer.  We signed consent for the surgery, and that is all I can recall of February 15, 2005.

On February 16, 2005 at 9 months old, Adrian’s emergency open heart surgery began early in the morning.  The procedure being performed was an anatomic revision.  Dr. Erez would be revising his VSD patch, repairing his tricuspid valve, placing a right ventricular outflow tract with an artificial conduit, and re-routing the blood coming to the heart, away from the right atrium, and to the pulmonary arteries without passing through the right ventricle.  This is also known as the Bidirectional Glenn procedure.  The operating room’s head nurse also came into the waiting area to speak to us all and informed me she would be calling the waiting room phone on a regular basis throughout the procedure to update us on Adrian’s status.  Everything was happening so fast that I don’t even remember seeing my baby before surgery.  The only thing I remember before speaking to Dr. Erez was praying in the hospital’s chapel.  I know my parents and Anthony’s parents were there.  The OR nurse called approximately forty-five minutes after surgery began to tell us Adrian went under general anesthesia with no issues and was getting ready to go onto the bypass machine.  She called us once again when he was on the bypass machine, when his chest cavity was open, when the first incision was made, when each of the four procedures were complete, when his chest being closed, and finally when he came off of the bypass machine.  I literally lived second to second only, because even looking a minute ahead into the future made my chest feel tight.  As long as I prayed and lived in the moment, I felt I could keep my sanity. At last, Dr. Erez entered the waiting area.  He looked exhausted.  I cannot imagine performing so many corrections on such a tiny heart the size of a baby fist.  Adrian’s surgery was ten hours long with eight of those hours on the bypass machine. Dr. Erez shook our hands immediately and was relieved to report the surgery was over.  He informed us that when he opened Adrian’s chest cavity, his right side of the heart was engorged to almost the size of his chest due to the blood back-flow.  He also explained the tricuspid valve wasn’t opening and closing because the three leaflets of that valve were not functioning.  One leaflet was snipped during Adrian’s previous surgery and the other was sewn into the VSD patch previously placed.  This left only one leaflet and it was dangling; unable to function on its own.  Dr. Erez said this was more than likely due to the small size of his heart five months ago. He also said during the surgery, there was an area of the heart that he had to cut through in order to repair Adrian’s heart to save his life.  That area is what makes the four heart chambers communicate with each other, so he would temporarily need to be placed on a pacemaker.  The pacemaker wouldn’t be implanted in his body yet because there was a chance his heart’s chambers would become synced again with time.  We thanked Dr. Erez for his miraculous work, his kindness, his humbleness, and for saving Adrian’s life.  Later that evening, Adrian was settled in the cardiac PICU.  Even though he had recently undergone surgery a few months prior, seeing him lifeless and on the ventilator again was shocking to my mind and body.  Seeing him this way is something I never have and never will simply get used to.  Every time is like the first time, if not worse.  The cardiac PICU doctors and nurses were very friendly and helpful. Around midnight, Dr. Erez came to Adrian’s bedside to check on him before going home.  Once again, we were all living minute by minute, then hour by hour. After several days went by, Adrian was able to breathe on his own and the ventilator was removed.  He required very little oxygen, but did require breathing treatments from a respiratory therapist about two or three times a day.

The cardiologist on shift every day checked his heart function without the pacemaker but unfortunately, his heart was never able to gain back it’s communication between the four chambers.  On March 4, 2005, Adrian had an epicardial pacemaker implanted by Dr. Erez. The two hour procedure went well and Adrian now had a tiny cookie-shaped device in his upper left abdomen area. It couldn’t be placed below his collarbone because he was and still is too little to have it placed there. Knowing he would have to live with a pacemaker starting at such a young age was sad, but at the same time I knew Adrian surviving this surgery was a miraculous blessing.  That evening I discovered Dr. Erez didn’t just see Adrian as a patient, but more as a masterpiece of a patient.  In his eyes and heart, I could truly feel he admired Adrian.  The PICU nurse caring for Adrian informed me Dr. Erez would call the PICU every night to speak directly to the nurse caring for him.  He wanted to make sure Adrian was comfortable and had clean bedding to rest and sleep in.  When Dr. Erez physically came into the PICU to check on him, he would gaze at him for a minute sometimes without uttering a single word.  I think this is because he saw firsthand just how sick Adrian’s heart was and how much he had to overcome just to survive the surgery and become stable. Adrian experienced several complications while hospitalized, including respiratory illnesses, swelling, cyanosis, and a severe stomach bug also known as the Rotavirus.  While ill with the stomach bug, anyone who entered his area had to wear gloves, masks, and paper gowns.  Adrian also experienced a huge setback once he moved from the PICU to a regular hospital room on the cardiac floor of the hospital.  He was in his private room for about two days until one night his blood oxygen levels dropped dramatically.  He was rushed back to the PICU where he remained for almost a week. Thankfully, he never had to be intubated with the ventilator.  My family and I cannot remember exactly what caused that terrifying event, but know whatever it was happened very suddenly.  I will never forget lying on his private room’s couch to rest when his machines started beeping.  The next thing I remember was nurses, a respiratory therapist, and a doctor rushing in. Hospital “codes” began to be announced over the intercom regarding his medical crash.  It was close to 3:00 a.m. that morning when the cardiologist on call was paged to come to the hospital immediately.  The cardiac doctor who arrived was Dr. Cory Mandel.  He appeared stunned upon arrival, but he took charge and knew exactly what to do.  It was almost as if he was able to read Adrian as a book.  He and the PICU team were able to stabilize him and as the sun rose, so did Adrian’s health.

Adrian was able to pull through and graduated to a private room again on the cardiac floor.  This time, there wouldn’t be any medical setbacks for him.  Up until that day, his hospitalization was similar to a terrifying rollercoaster ride with steep highs and lows.  Even when Adrian was moved out of the PICU, Dr. Erez visited him almost daily. If he physically could not come to the hospital, then he would call Adrian’s nurse.  He built up the strength to begin receiving daily physical and occupational therapy in the hospital.  At the age of almost 1, he couldn’t crawl or sit because of his first year of life requiring so much hospitalizations and bed rest.  He seemed to enjoy his therapy sessions but tired out quickly and would become frustrated.  His endurance grew with each session and he progressed with time.

Before I knew it, it was March 20, 2005…Isaiah’s 2ndbirthday. Our family asked for permission to have a small celebration in the family kitchen area of the cardiac floor, which was only a few feet away from Adrian’s room.  Our family members were extremely helpful by getting things together that required travel outside of the hospital.  We had cake, balloons, a homemade banner, silly string, gifts, and the hospital also gave Isaiah a teddy bear.  He had such a fun time spraying silly string and stuffing his face with cake! A week later on March 27, 2005, it was Easter Sunday.  My family celebrated Easter together at the Ronald McDonald House, which was one block away from the hospital.  One of us stayed behind to be with Adrian and we would rotate family members to be with him every hour or so.  As Adrian’s health increased, I was able to give him sponge baths every night and changed his bedding myself.  I was thrilled that I could now care for him more myself. When he slept, I could not help but stare at him in amazement.  The next thing I knew, I would wake up from catnapping with my head on his bed.  My mind would flashback to his birth and walk me through the past eleven months.  The combination of God and Adrian’s entire medical team’s knowledge and care carried my baby through this life-threatening storm.  Sleep was rare, but it was okay with me.  I remember one evening when my mom was staying the night with Adrian and I in the hospital while Anthony stayed with Isaiah at the Ronald McDonald House, Adrian had just fallen asleep.  My mom sat with him while I took a quick shower in the room’s bathroom.  When I came out, she had put clean sheets on the room’s couch and prepared my bedding for me.  With a smile on my face, I asked “what are you doing?”  She said “I’m taking care of my baby, just like you have been taking care of yours”.  I will always remember that evening and her doing that for me.

During this hospitalization, we had the privilege of meeting other heart babies and their families.  In particular, there were two infant girls in the PICU beds right beside Adrian’s.  Their names were London and Jolie.  They had also recently undergone open heart surgeries. As parents, we became a support team for each other throughout Adrian’s two month hospital stay.  In the PICU, the three of them were known as the “Terrific Trio”.  Sadly, Jolie passed away after not being able to ever fully recover from surgery.  I believe an infection occurred in her body and she passed at just a couple of months old.  London graduated from the PICU and up to her own cardiac private room, but suddenly coded blue one night and was rushed back to the PICU.  Within a few days, she also passed away.  Both families had to give consent to have their babies removed from life support because there was nothing more the doctors could do for them.  I will never forget those times and I have always carried them in my heart.  Adrian does not remember them, but one day I will tell him about his beautiful angel friends.

Thankfully, after a little over six weeks of being hospitalized, Adrian was discharged.  While in the hospital, Anthony and I decided we should keep Adrian as an established patient of CCMC cardiologists and not return to Virginia.   The primary cardiac doctor we chose to care for him was Dr. Cory Mandel, the cardiologist who rushed in to stabilize Adrian the night he had a medical crash.  Anthony returned to Virginia Beach to transfer his military duties to Fort Worth and set up the relocation of our belongings.  Isaiah, Adrian and I stayed in Texas with my parents.  Adrian continued to receive physical and occupational therapy through Tarrant County’s Early Childhood Intervention program three times per week.  He was also experiencing trouble swallowing textured or whole foods, so a swallow test was performed but there were no physical abnormalities found.  ECI specialists and his speech pathologist believed his dysphagia was due to a combination of having to be fed through a feeding tube for so long and anxiety from the feeling of solids traveling down his throat because of the ventilator tube.  For the next several months, I pureed all of his meals.  He slowly progressed with swallowing and also began to sit and crawl on his own. On April 19, 2005, we celebrated Adrian’s 1stbirthday.  He was still quite fragile at that time, so we celebrated at my parents’ house with family. His first year was extremely brutal, but his survival overshadowed the many storms.

In the summer of 2005, my parents, Anthony and I decided to rent a larger home together.  It was in a nice and quiet neighborhood where we could go for outdoor walks with the kids in their double stroller.  We all helped each other and enjoyed being so close.  We needed that closeness after all of the emotional trauma we had experienced and the more love for the kids, the better.  Also in 2005, Adrian began walking!  Since he was mobile now and he and Isaiah were too young to comprehend Adrian’s fragileness, we were all constantly on our toes making sure they were careful with each other.

For the next three years, Adrian’s health remained stable and his heart was as well as it could be.  In the summer of 2007, Anthony was transferred to Oklahoma at Tinker Air Force Base so we moved to Midwest City, Oklahoma.  The drive to Fort Worth from Midwest City was only a three hour drive, so we decided to continue taking Adrian there for his cardiac care.  Adrian’s cardiac history was very complicated and I didn’t want for him to switch his cardiac care to anywhere else.  Dr. Mandel and Dr. Erez knew him all too well, as did the rest of the CCMC medical team.  In early fall of 2007, Adrian’s routine echocardiogram showed his tricuspid valve began to moderately leak again.  Dr. Mandel recommended he undergo a heart catheterization to measure his blood flow’s pressure levels.  On October 26, 2007, he underwent a heart catheterization that showed his heart’s pressures were elevated on the right side prominently.  There were a few blood flow obstructions throughout his heart and unfortunately, we had expected this.  I knew his heart would need repairs every so often because as his heart grows, it outgrows repairs and scar tissues from prior surgeries begin to cause obstructions in different areas.  Surgery was coming in the near future…and I dreaded it.  The more Adrian grew and with each passing day, I fell more and more in love with him and grew more and more attached to him.  I will never get used to him needing to undergo procedures.

At the beginning of 2008, Anthony and I separated and filed for divorce. Still today we remain close friends and partners for Isaiah and Adrian.  He continues to serve in the military and anytime he is able to have vacation from work, we work together so he can have time with the kids.  It is a blessing we still have the maturity and respect to cooperate well with one another.  We do not follow a certain “visitation schedule.”  When he is able to see them, then he sees them.  That is very important to the both of us for our children and always will be.

On May 2, 2008, Adrian would undergo open heart surgery with Dr. Erez while on the bypass machine.  For this procedure, Dr. Erez would be re-repairing his double outlet-right ventricle, replacing his pericardial patch close to his ventricular septal defect leak, repairing his tricuspid valve with a patch and leaflet extension, and also replacing his conduit.  Anthony, Isaiah and I traveled to Fort Worth for the procedure the evening before the big day.  My parents were also there for the surgery.  It was difficult to sleep the night before.  I believe I am very strong in faith, but I am also human and I worried. It’s quite complicated for me to write about this, but I feel honesty reveals the raw truth in Adrian’s and my story. Yes, in my mind I asked myself these terrifying questions.  I always have in the past and know I always will.  Will this be the last night my son will live?  Will this be the last time I kiss him goodnight and watch him sleep? Then when morning comes and he’s prepared for surgery and being wheeled away from me, will that be the last time I see my son smile at me with his beautiful brown eyes?  Questions like this fill my mind for months prior to surgery, then as the time nears my mind and heart both become heavier.  The morning came quickly and Adrian was weighed in and prepared for surgery.  The nurse gave him Valium to help him relax before taking him to the OR.  During this time, I was working at the Midwest City YMCA and my co-workers were kind enough to pack some goodies for Adrian and also gave him a Thomas the Train toy, as this was his favorite character at the time. Adrian requested that his toy go back with him to surgery and they allowed for him to take it.  Thomas was even given an identification sticker, which Adrian got a kick out of placing on his toy.  My family and I held ourselves together while we kissed Adrian goodbye and told him we would be waiting for him and Thomas after his little “nap”. He was very relaxed and silly because of the Valium, then off he went.  The head OR nurse contacted us every forty-five minutes to every hour to update us once again.  The surgery lasted approximately four hours.  Dr. Erez met with us as soon as he was finished with his part of the surgery, while the OR team cleaned Adrian.  Thankfully, Adrian did well and we would be seeing him within an hour or two in the PICU.  When we entered his area, he had just been removed from the ventilator and weaned to room air without difficulties.  He had grown so much since the last time he went through surgery at just 10 months old. This time at 4 years old, Adrian was able to tell me when he felt uncomfortable or when he was in pain.  He would also tell me in his own baby talk words that he wanted to go home.  When he was an infant, I remember thinking it would probably be a little easier once he was older and could actually tell me what he was feeling or what he wanted.  On this day, I realized it certainly was not easier.  Now he could tell me exactly what he felt and it broke me inside.  I remember he would hold me by my cheeks and beg me to take him home or ask me to carry him.  Not being able to give him what he wanted was excruciatingly painful.  I remained by his side all day and night.  I told him how proud I was of him and his strength. Adrian recuperated rapidly after this surgery and on May 6, 2008, he was discharged to come home.  He was very excited to be going home and we were all ecstatic!

In the summer of 2008, Adrian began showing signs of emotional and mental trauma.  Haircuts were impossible for him to sit through without screaming, crying, shaking, or sometimes even being held down in a lap.  Cutting his toenails or fingernails were also a battle because he didn’t want his feet or hands held the way they have to be when trimming them. Wearing a paper wristband as an admission pass to a park, zoo, event, or pumpkin patches was also terrifying for him. These little things that most children love and enjoy were absolutely frightening to him.  My motherly instinct explained his traumatizing reactions to these things.  I believe haircuts scared him because there was a time or two when part of his head had to be shaved in order for an IV to be placed in his scalp, and these IVs were placed while he was awake.  He also required IVs in the feet and hands, and I feel this is why he became so fearful when we held his hands or feet to trim his nails.  I also think the paper wristbands scared him because when in the hospital he has to wear an ID bracelet, a medication bracelet, and a blood bracelet.  His echocardiograms also had to be performed when he was sedated, simply because he was terrified of any medical procedure, no matter how small or painless it was.  In addition to all of that, he was also very frightened of doctors, nurses, lab technicians, x ray technicians, or anyone else who appeared to be dressed in any kind of medical apparel.  When at his different doctors’ offices, the doctors and nurses were understanding and thoughtful enough to remove their white coats or stethoscopes before walking into a room with Adrian.  With time, his fears lessened.  He does not fear medical personnel anymore, and only about a year ago he actually started enjoying haircuts and nail trimming.

On May 1, 2009, Adrian underwent another heart catheterization at CCMC because his veins in his upper torso and neck appeared to be more prominent than the norm for him.  My mind began trying to prepare itself for some sort of surgery but when the cardiologist came to speak to me afterwards, I was relieved and thankful to hear the amazing news that Adrian would not require surgery at that time or even need a stent. He simply adjusted his heart medications and Adrian was discharged the following day without complications.

In the fall of 2009, Adrian had a thorough interdisciplinary pediatric developmental-behavioral evaluation at 5 years old.  The developmental domains tested were cognitive, speech-language, gross motor, fine motor, and personal-social.  In all areas, Adrian’s scores averaged approximately eighteen months below the norm.  The specialists’ team concluded the reasons for his delay were caused by a combination of things.  One reason was because he was exposed to low oxygen concentrations for prolonged periods of time with each of his four heart surgeries thus far.  Another reason was because he spent a large amount of the first four years of his life ill and on bed rest.  The team noted his cardiovascular condition interfered with his “interactions with the environment and limiting his experience in comparison with typically developing children.”  The multidisciplinary team found Adrian to have delays of around two standard deviations below average across all developmental domains.  Isaiah was in school by this time and began interacting with more children.  Isaiah was only a year older than him but he started showing signs of frustration with Adrian.  He couldn’t understand why Adrian couldn’t play catch, kick a ball around, or why they couldn’t wrestle around or play tag like most kids their age do.  As time has passed, Isaiah understands quite a bit more but is still confused and will become frustrated at times.  Also in the fall of 2009, my new husband, Joe and I welcomed a beautiful baby girl into the world, Bella Joy.  Adrian immediately fell in love with his new baby sister.  I noticed he wanted to be with her throughout the majority of the day and loved touching her forehead.  If she cried, he showed a large amount of concern.  He also touched my forehead quite often too. When we were in stores, at parks, visiting family, or at doctor appointments, Adrian could not get enough of touching children’s foreheads and his urge to do this heightened if the child was crying or in some sort of pain.  Even if I became ill or had a headache, he wanted to be right by my side to touch my forehead.  When he began kindergarten, his teachers noticed him doing this as well.  Today he still loves touching foreheads, especially mine and children’s.  In January of this year I finally felt if I asked him why he loved doing this, then he would be able to tell me.  He explained to me that while he is in the hospital, everyone touches his forehead so now he touches others’ foreheads.  He is absolutely correct.  I look back at pictures of his hospitalizations and in most of the pictures where someone is standing at his bed side, whoever is with him in the picture is caressing his forehead…the only part of the body free of IVs, tubes, probes, or medical tape.  If anyone is in pain, especially children, then that is Adrian’s way of comforting them.

In January 2011, Joe and I took Adrian to his regular six month cardiology checkup in Fort Worth.  Adrian appeared to be healthy and I didn’t have any concerns to discuss with his cardiologist over the previous six months.  Unfortunately, on the inside his pacemaker was not doing so well.  His heart seemed to be doing fine, but Dr. Mandel presented to our exam room with concerns of his pacemaker’s battery.  He began by explaining some good news at first. The good news was Adrian’s heart function was not decreasing, but his pacemaker’s battery only had a few months of battery life left, when it should have had at least a couple of years of battery life remaining.  He went on to explain that one of his pacemaker leads was loose and not completely attached to his heart.  Because it was no longer securely attached, it was having to shock harder and more often, causing the battery to drain rapidly.  Since there were only a few months of battery life remaining, a surgery to repair his pacemaker’s wire lead and battery needed to happen within the next month. The heavy news continued…because his pacemaker sits in his lower left abdomen area and the wires lead from there up to his heart, his chest cavity had to be opened again.  All of this news was overwhelming and shocking to me.  Joe and I, Anthony, and our entire family were completely thrown off guard.  We all believed we were going to hear a good report from Dr. Mandel.  On February 4, 2011, we arrived at the hospital early in the morning for the surgery.  There was a dangerous ice storm outside, which caused the surgery to be delayed a couple of hours.  Dr. Erez had moved back to Israel, so Dr. Tam would be performing the surgery.  He is also an amazing long-time cardiac surgeon of CCMC.  By this time, Adrian was two months short of turning 7 years old and was aware he would be having surgery.  He was so afraid.  Before previous surgeries he was too young to know what was happening.  What broke our hearts even more was that Adrian was telling us how fearful he was prior to surgery, and pleaded with us to please take him home.  The medical team who would be caring for him were very understanding.  They answered any questions Adrian had and allowed him to touch and handle their stethoscopes, medical flashlights, tongue depressors, blood pressure cuffs, oxygen saturation probes, and also allowed him to place his own vital probe stickers on his torso as they directed him on where exactly to put them.  The medical team tried to make everything a game for Adrian, helping him to relax a little more. He was also given a plain white pillow-type cushion that was made in the shape of a boy doll.  There were little cute hospital gowns made just for those cushions with different fabric designs.  Adrian picked out a hospital gown for his and decided to name his pillow person “Buddy”.  He asked my mom to draw a face on him, which she did, and also requested for Buddy to have a medical bracelet placed on him as well.  This helped him to get through most of his pre-operative process, but when it was time for his blood to be drawn, he became fiercely distraught and was crying and screaming like he was being tortured.  The staff placed a band-aid on his and Buddy’s arms afterwards.  This seemed to help him feel better.  Now it was time to change him into his hospital gown, which didn’t bother him, but always makes me get a lump in my throat. I constantly have to remind myself that I am not prepping him to go through pain; I am prepping him to go through a procedure that will help him thrive and continue to live life.  It was time for surgery again.  Adrian was given Valium to relax then wheeled out of the exam room as Joe, Anthony, his parents, my parents, my brother, sister-in-law, Isaiah, and I followed behind him and his medical team.  I could feel the room and hallway’s emotional heaviness and heard sniffles coming from family.  All of a sudden I noticed Isaiah, my usually shy baby boy that liked to keep to himself privately, quickly walk ahead of all of us.  He made his way to the very front of Adrian’s bed as it rolled.  He walked by the foot of the bed and calmly told the medical team “that’s my little brother.”  It was as if he was trying to tell them to take good care of Adrian. The anesthesiologist said “We’re going to take great care of your little brother.”  Isaiah smiled but I could tell he was nervous like the rest of us.  Once he was taken behind the OR’s restricted doors, we all emotionally let ourselves go.  Our eyes swelled with tears as we walked back to the waiting room and anxiously awaited for the nurse to start calling us periodically with surgery updates on his progress.  This was also the first time Joe would go through a procedure with Adrian.  In the past, he had been through procedures with older family members of his, but never a child, much less his stepson whom he had fallen in love with as his own.  I knew he wanted to be strong for me, but I could tell he was struggling inside with Adrian being taken away and going through surgery.  It was also Isaiah’s first time somewhat understanding what surgery meant and what Adrian would be enduring.  I felt I needed to be strong for Joe and Isaiah both.  My sister-in-law took Isaiah home with her to Dallas, where he and Bella would stay during Adrian’s hospitalization. The OR nurse called us every forty-five minutes again to update us on his progress.  After four hours, the nurse called to tell us Dr. Tam completed the surgery and would be meeting with us soon in the waiting area.  We were greatly relieved that Adrian was stable. While waiting for Dr. Tam to meet with us, the anesthesiologist and nurses were wheeling Adrian down the hall in his hospital bed.  We only got to see him for about fifteen seconds or so, but were grateful.  His face was a little swollen, especially his eyelids.  He was awake but very groggy, and was being given bagged oxygen through a mask.  He was covered with a sheet from his shoulders down, so we couldn’t see his incision at that moment.  After the medical team took him away to the PICU, we all hugged each other and praised God.  Joe was very emotional seeing Adrian that way for the first time, but felt a huge relief that he was okay.  Within a few minutes thereafter, Dr. Tam entered the waiting room.  After shaking our hands, he explained that there was more he needed to do than he originally had planned but felt it was medically necessary to go ahead with what Adrian’s body required.  He had to completely replace Adrian’s old pacemaker with a new one, which also had an extra lead on it.  He believed his heart needed this extra support.  He also described how difficult it was to open Adrian’s sternum. Since Adrian was, and still is very thin, the space between his sternum and heart conduit is also thin.  When Dr. Tam began opening his sternum, he saw that the scar tissue from it had adhered to Adrian’s heart conduit, so he had to carefully detach the scar tissue from his conduit.  Once he accomplished that, the surgery went smoothly.  Now Adrian’s new pacemaker would appear a little bigger and had three leads on it instead of two.  We each thanked Dr. Tam and Joe, Anthony, and I took group pictures with him. After about an hour, a nurse entered the waiting room and asked for me.  After I made myself known, she said Adrian was asking for his “mommy”.  Joe, Anthony, and I walked back to the PICU together.  He was receiving a breathing treatment from the respiratory therapist and wasn’t requiring oxygen.  Joe was squeezed my hand tightly as we walked to Adrian’s area.  I remember Joe stopped walking abruptly.  I looked at him and he had that terrified look of shock and sorrow. His eyes became very glossy and his hands began to tremble.  I looked towards Adrian and saw the racks of IV fluids and medications behind him, his vitals monitor screen, a much larger and noticeable pacemaker shape bulging through from his abdomen, and his fresh incision.  As much as this image ripped me apart inside, I knew I needed to be strong for Adrian and Joe.  I assured Joe he was okay and asked him to come see Adrian at his bed side.  He walked with me and smiled at Adrian as tears rolled down his face.  Anthony also comforted Joe as he got closer.  Adrian was still groggy but knew we were there.  Joe began caressing his head as I spoke to Adrian, letting him know of how many loved ones he had waiting to see him.  As soon as he moaned, I couldn’t help but allow my tears to fall as well.  I knew Adrian was okay, but seeing him this way again was shattering.  I asked him if he wanted to touch my forehead and he nodded ‘yes’.  I leaned down as far as I could so he wouldn’t have to move his hand too much. He touched my forehead and told me he loved me.  I stayed with him as our family members made their way in and out of the PICU to see him two visitors at a time.  Isaiah was also brought back to the hospital to see him.  He walked into Adrian’s area cautiously, but once he saw him sleeping peacefully, he appeared to be fine and relieved.  The medical equipment around the bed didn’t bother him, because he didn’t understand what it was or what it did for Adrian.  We also made sure to have his incision and new pacemaker covered before Isaiah walked in.  They didn’t get to speak to each other, but I felt Isaiah was at peace before he left for the night again with my brother and sister-in-law.

Adrian’s hospital stay went fairly well.  There were no infections or viruses this time, but Adrian had some swelling around the pocket of skin that his pacemaker sat in.  It wasn’t painful and it didn’t seem to bother him.  Dr. Tam and Dr. Mandel decided to keep him in the hospital for about three extra days to monitor the swelling.  Adrian was very unhappy having to be in the hospital and refused to eat.  His medical team was concerned about him not wanting to eat, but we all felt it was him being stubborn.  He told us he wanted a bean burrito from Taco Bell, so Joe and Anthony went to Taco Bell and bought him one after clearing it through the nurse.  Still, Adrian refused to eat even that.  He didn’t really want certain foods, but wanted to leave the hospital.  Because he was eating so little, his doctors decided to extend his hospital stay for another two or three days.  During his stay, we all worked with him to start sitting up and walking again.  We walked him to the patient activity room, where he would participate in group activities with other pediatric patients. There were also video game systems in the activity room, where he could play his favorite game of all time, Super Mario Brothers.  Finally, after a little over a week in the hospital, Adrian was discharged!  He was thrilled to come home, but had to wait two weeks before returning to school.  The day before he went back to school, his teacher asked me if we would go to the school so they could welcome Adrian back and to show his classmates why everyone needed to be careful around him and with him.  I thought it was a wonderful idea and took Adrian to visit the day before his return to class.  The students were very understanding and were excited to have Adrian back.

In November of 2013, Dr. Mandel gave us good news and not so good news. The not so good news was that his tricuspid valve was leaking moderately and more than it has been since his 2008 surgery.  He also forewarned us that a heart catheterization in the near future was more than likely imminent.  It would allow them to measure exact blood pressure measurements in his heart.  We all agreed to cross that bridge when it comes. The good news happened during his pacemaker check.  During his pacemaker checkups, his technician turns down the pacemaker’s power to monitor how Adrian’s heart beats on its own.  For the past eighteen months, when Adrian’s pacemaker is turned down to thirty beats per minute, his heart wouldn’t show any beats of its own.  The technician won’t turn his pacemaker any lower than that because it would affect his body enough for him to actually take notice.  During this check however, Adrian’s heart actually beat on its own a few times!  It beat very irregular and sporadically, but a couple of beats here and there was very exciting to all of us, even to the technician who has known Adrian since he first became a patient at CCMC in 2005.

Since Adrian began school in 2008, he has been restricted from numerous activities and also needed to repeat kindergarten.  His restrictions will become a little less as he grows older, but since he is still young and does not understand his limits, there are quite a bit of activities he cannot participate in.  Because of the reconstruction and revision of his blood flow to and from his heart, he carries extra blood flow in his upper torso and head.  If he gets injured and bleeds in that area then he will bleed more than the norm.  Also, since his conduit lies over the top his heart and underneath his sternum, blows or trauma to the chest must be avoided. His sternum is very fragile since it has been sawed open six times.  If Adrian gets hit or falls hard enough on his chest, his sternum breaking could pierce his conduit, which would be catastrophic for him.  Last but not least, Adrian’s pacemaker area is also a fragile area because it sits right under the skin.  Injuries in the area of his pacemaker could damage or break it, or one of the leads could become loose again.  With all of these possible high risk injuries, Adrian’s daily activity is very limited.  When he is older, he will better understand that he cannot play recreational football, soccer, baseball, track, wrestling, or any other games or activities that could cause any injury to his head or torso.  For now, even outdoor play and physical education must be modified and monitored closely, because small accidents happen several times a day at schools and parks, and just as Adrian doesn’t understand the reasoning behind his limits or cautions, neither do other innocent children playing on the playground with him or participating in physical activities with him.

Adrian has gotten frustrated and upset because of his restrictions.  He cries and vents because he “can’t have fun like his friends” or “like the other kids at school”.  Between our family, loved ones, school leaders, church leaders, and medical team who have cared for Adrian, we have all tried our hardest to simply redirect his negative thoughts to positive thoughts.  We try not to tell him, “well you can’t do that because you have a pacemaker”, or “you can’t do this because of your chest”, or “you need to stay away from that because of your heart.”  Instead, we make statements like “why don’t we try this instead?” Or “let’s see if you can go do that!”  Every now and then, he will ask “why did God make me with a sick heart?” My answer to him is, “because God was really excited when he was building you.”  That answer makes him smile and helps him to keep putting one foot in front of the other.

Adrian is now homeschooled at 14 years old.  His last pacemaker was placed in June of 2017 and he had his 5thopen heart surgery in August of 2017.   As of today, Adrian’s prognosis remains unclear.  At his last cardiology check-up, Dr. Mandel and I discussed that in the future a heart transplant is certainly not out of the question for him. We are estimating this will occur sometime in his teenage years.

My belief is…through God and the American Heart Association, Adrian was able to survive past birth and has been given the chance to live a long life. There is no gift greater than this. There is no greater gift than saving a life.”

I asked Tilly what her experience was like through each of her pregnancies dealing with being on or off medication.

“For my first pregnancy, I was terrified to continue to taking my antidepressant Paxil, even though I had been taking it since I was 15 years old, and was now 19. I didn’t even want to take Tylenol, in fear of any medication harming my baby. I discontinued taking Paxil cold turkey when I was about only four weeks along. Within two or three days, I began feeling ill and experiencing symptoms common to a head cold. Within a couple of weeks, my symptoms worsened and I felt as though I had the full blown flu. Within a month, I started experiencing painful zapping sensations in my brain periodically, and was so physically and emotionally miserable because of my side effects, that I found myself hoping a vehicle would hit me or some sort of freak accident would happen to me, even though I didn’t want to feel that way and certainly didn’t want anything happening to my unborn son.

Four months into my pregnancy, due to my physical and emotional illness, my obstetrician strongly recommended that I begin taking my Paxil again. He assured me that it was safe for me and my baby if I began taking my medication regularly, so I did. My first son was born healthily.

During my second pregnancy, I was again reassured that I could safely continue taking Paxil as prescribed by my doctor, so I never discontinued taking it. I felt fine during my pregnancy, besides having morning sickness at night. Four weeks before my due date, my obstetrician performed a routine ultrasound to see if she could tell if my baby was going to be a boy or girl. That day, I discovered I was having a boy, and also that he had some heart defects. My blood pressure became elevated over the next two weeks and I had to be induced. My son, Adrian, was born, but due to his severe congenital heart disease, I was not able to hold him for the first time until he was 8 days old, just hours before his first heart surgery would take place. Only five months later, news broke that Paxil could cause heart defects, lung defects, club feet, and cranial defects in newborns when mothers consumed the antidepressant during early pregnancy.

By the time I became pregnant for the third time, I was on a different antidepressant. I believe it was Celexa. Celexa was not (and still is not) known to have a risk as high as Paxil at causing birth defects when taken during pregnancy. However, I discontinued taking my Celexa for about six months of my third pregnancy, until I became very ill and continued taking my medication. I did not experience the painful zaps in my brain while not taking my medication, but I did feel as though I had caught a severe head cold, then the flu. My symptoms did not subside until I continued taking my medication. My daughter was born healthy.”

I also asked her what she would say to another mother who is struggling to cope being pregnant while off her medication.

“It was not until five months after Adrian was born, that doctors and pharmacists were aware of the risks that certain SSRIs (selective serotonin reuptake inhibitors) can cause to unborn babies during their development. What I went through with my son, and what he has gone through himself, and will always have to go through for the rest of his life, I would not wish or want any other mother, child, or family to go through. It not only affected me and my son, it affected his siblings, our extended family, our friends, his friends he has made growing up, his teachers, his church family, and the list goes on.

In hindsight, if the doctors would have had knowledge of the risks and dangers and notified me of them, I certainly would have discontinued my medication for as long as I possibly could, and seen a counselor or psychiatrist every single day, if that is what it would have taken me to be able to discontinue my medication for the majority of my pregnancy. Since my child was one of the “percentages” that was born with these “slight risks” of heart defects; recollecting the critical months, weeks, days, hours…seconds, if I had the chance to go back in time, I would 100% have done exactly what I said I would do just by simply having knowledge of the risks, and I would open up to my family, my doctors, my friends, and get any and all help I could get in order to keep my baby and I safe as I fought to stay off of my medication for as long as physically possible. In my opinion, there is no greater worry, pain, anxiety, or nauseating sensation that compares to what my little boy has gone through since the day he was born.

I will never ever know what it is like to have each of child of mine live a healthy and normal life. The only way I would know what it would be like to have my children healthy is basically if Adrian moved on to Heaven, but then, while I would have two healthy children, that means I would have one who would no longer be with me…a totally different and tougher level of heartache.

As soon as pregnancy is discovered and if you are taking an antidepressant, I would first recommend you discuss your medication and pregnancy with your obstetrician. Discuss your options with them. If there is a chance of your child being harmed by the medication you are taking, do all you can to discontinue the medication for as long as possible. I say this and recommend this because I have lived through it and that is exactly what I did once I had knowledge of the risks, and certainly what I would do again.”

1 Day Old
8 days old after his 1st open heart surgery
5 months old after his 2nd open heart surgery
September 2004, doctors thought Adrian only had a few hours left to live. The chaplain had just finished anointing his body when this photo was taken and my sister was calling family to let them know.
Coming home 6 weeks after his 3rd emergency open heart surgery
New pacemaker
7 years old after his 4th open heart surgery
13 years old after his 5th open heart surgery
Me and Adrian fall 2005
September 2017 visiting after his 5th open heart surgery (2 months before Maci was born)
Adrian The Heart Hero, Superman, Our “Peanut”

This post is not meant to provide medical advice. Always consult your doctor about any questions about your health, medications, and pregnancy.
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