Week two post-op came, and Marin was finally strong enough to be weaned from ECMO. I later learned that while a person is on ECMO, the body has no pulses because the machine creates a continuous flow rather than blood being pumped by the heart. Marin had no pulse for eight days. How was she still alive? ECMO is also VERY high-risk for a number or reasons, and is only used in worst-case scenarios. It can damage the lungs, blood can clot in the ECMO cannulas, and she had a significant chance of contracting an infection. By God's grace, none of these situations happened with Marin. It was so nice having that huge machine out of her room, knowing that although she was still very sick, her body was learning to do things on its own again. The machine was kept right outside our door against the wall, and I was always sad when I saw that it was being used, that another family had to see their baby on it.
Marin's numbers were all over the place...regulating her required constant monitoring and numerous medications. Some days she would be under a warm blanket...other days we walked in to find a device blowing air on her because she had a fever and needed to be cooled down.
Life outside the hospital had changed...we had moved from the hotel to a home, provided with free housing through a program called Hospitality Homes. We stayed in a four-story mansion that dated back to the early 1900's with a grumpy yet generous old widower named Paul Polishuk. We were there for over two months, and he generously gave us complete access to his home, including the kitchen and laundry room. Having a place to call "home" made the stresses of our daily lives seem a little easier. Each night away from the hospital, an internal alarm would wake me around 3 am, and I would call Marin's nurse to get a quick report. It was always a game of input and output for her...She needed to gid rid of all of the medicines and IV fluids being pumped into her, and her body had a hard time doing this.
After fourteen days of literally watching our daughter's heart beat under a thin sheath placed across the hole in her chest, she was finally able to have her chest closed. This was a huge step forward for her, and at that point we all had more faith that she would pull through. It was only after this took place that she was slowly weaned from her paralytic medications and able to open her eyes for the first time in weeks. Those first glances at her outside world must have been so scary for her, and we made sure we were there. Her drug-heavy eyes looked in different directions and she couldnt seem to focus. We were told this was normal, that since she had been on so many heavy drugs for so long that her body was adjusting.
Several days passed, and slowly, lines and tubes were removed. Each day we would come in to find something else missing and a few small stitches in its place. She began to look like a baby again and less like a medical catastrophe.
We were allowed to hold her that third week, and although overjoyed, I quickly saw that it was very uncomfortable for her with the tube down her throat. She would gag and try to cry, but no sound came out. It was heartbreaking to know she was hurting, and I wanted nothing more than to comfort her. We decided to avoid holding her again until she could breathe on her own. To entertain her, Jacob and I bought her a mobile, and she would stare at it as it spun. She followed it with her eyes and seemed to take comfort in it being there.
At one month into our recovery, and after much waffling over the decision whether or not she was ready to breathe on her own, Marin decided to extubate herself. She got so mad at one of the technicians doing her ultrasound that she cried and cried until the ventilation tube popped right out of her mouth. The entire team of doctors and nurses rushed in, ready to reintubate her, but Marin looked so happy and was breathing so well on her own that this wasn't necessary. She was put on oxygen and was doing great. I still believe this was her way of letting them know she was ready to breathe on her own.
She had slowly began to get breast milk through a tube that went down her nose and into her stomach, and the elephant-like skin on her once-chubby legs began to fill out again. We attempted daily bottle and breastfeeding, but she refused, and would cough and gag when she did drink. I continued to pump breastmilk into small containers 4-5 times a day, and often fell asleep in the pumping room. Jacob would call and wonder where I went, and he could always find me laid back in the recliner of the secluded pumping room, enjoying the quiet time to myself.
After being extubated and having her chest tubes and temporary pacing wires removed, Marin's heart rhythm began to fluctuate. She would go from 100 beats per minute down to 50, then back up again. This temporarily seemed to get better with doses of electrolytes, but it would always return to an unstable rhythm. The decision was made to put in a permanent pacemaker to stabilize her heart rhythm, so Marin went to the OR again to have the leads placed on her heart and the pacemaker in her abdomen. To us, this was a slap in the face...we had only had her back in our arms for a few days, then another surgery. We feared the worst, because this was all we had known.
Thankfully, she flew through the operation with flying colors, and was back in our arms by that evening. We were so grateful.
Marin was moved out of the Cardiac ICU after spending almost forty days there. We were moved to a larger room on the stepdown unit, and we had a roommate. After another week of regulating medications and more attempts at nursing and bottle feeding, Dr. Breitbart asked what we thought about going home to finish recovery at Our Lady of the Lake in Baton Rouge. We were thrilled, and immediately accepted.
The next day, Jacob returned home, and we prepared to fly out the following morning on a private jet to Baton Rouge. Marin wasn't considered to be stable enough to fly commercially, so a private flight was set up that would include a nurse and respiratory therapist. The cost for the one-way flight was $30,000, and once again our insurance came through for us. We packed all of the things we'd accumulated since ariving in Boston, and signed all of the necessary paperwork. We were ready to go HOME!!!
As our luck would have it, a huge snow storm came in the following morning, and after getting into the ambulance headed to the airport, we got stuck in about 3 feet of snow, and had to return to the hospital for the night.
The next morning's attempt was much more successful, and we arrived at the airport. As I stood outside on the tarmac waiting to board the plane, I began crying. This was the end of our trip to Boston. We had almost lost her several times, but we didn't. I owed my life, and hers, to this city, those doctors, that hospital. She was our miracle, and anyone that had been through this experience with us knew that to be true. Thank God for Boston.
Tuesday, November 23, 2010
Tuesday, November 16, 2010
Struggle for Survival
Unfortunately, the morning after the worst day of my life did not wake me with a sunny disposition and hopeful heart. I was a battered woman. Beat up by my emotions, by the events of the preceding day. I had to force myself to get out of bed, to go see her at the hospital. If she was still in that broken body somewhere, she needed me. She needed to know that I had not given up, although on the inside I nearly had. She needed faith, prayers, strength. And I would give her everything I had in me.
We trudged through the frigid air and into the warm hospital. This place was so inviting...so welcoming...how could my daughter be dying upstairs? Did the people in the lobby not understand what was going on here? Most of them did, all too well. Parents of children with deformities, defects, kids in wheelchairs...they were all a normal, daily sighting here. This was where they brought their children too, putting their faith in doctors they had only read about. I soon became aware that this was a place full of miracles...that children throughout the world were sent here for treatment. If she was going to die, at least we brought her to the best place possible for what she needed.
The Cardiac ICU smelled of Purell and antiseptic, to this day a smell that immediately brings me back to those metal doors entering the unit. We were let back to see her. There she lay, as she had the night before, still looking almost unrecognizable. Her room was busy. She was under the constant supervision of nurses, therapists, and ECMO technicians. They worked tirelessly to balance the machine's capabilities with what her little body needed to survive. We learned she had lost over ten units of blood throughout the night, and she was being transfused almost hourly. There was still a source of bleeding somewhere, and it needed to be found and stopped quickly. We were taken to a private room, where her surgeon discussed the need to do a heart cath to look for the source, and then most likely go back to the OR to stop it. We agreed, as this was our only hope. We signed the paperwork, being made well aware that the risks listed on the top of the page simply said "Death."
We learned that morning that her cardiac surgeon had cancelled a speaking engagement somewhere out of the country to stay and care for Marin. The thought of this humbled me, and made me realize how important she was to everyone...not just us. He was determined to stay and try to fix her.
After the cath, we were told they "thought" they had identified the source of bleeding, and needed to go back to surgery to redo her repair. Before we left the consultation room that day, my amazing husband did something I will never forget, and something that I have no doubt played a huge part in that surgery; he asked our cardiologist and surgeon to pray with us. They graciously accepted. We sat, holding hands with these Harvard-educated and world-renown physicians, humbly asking God to heal our daughter. I left the room in tears, humbled by these two brilliant men.
Toward the late afternoon, we spoke with her surgeon again. He had successfully stopped the bleeding, but her heart was still in very critical condition after what it had been through. Dr. Mayer uttered a phrase that we would hear almost daily for the next few weeks..."She's not out of the woods yet." He refused to give us any optimism until he himself was able to feel some. I was heartbroken still, but thankful for his honesty.
The next week was full of setbacks, and a few small steps forward. Her body was so swollen from all of the fluids given during and after surgery that her heart and lungs still were unable to function on their own, and she remained on ECMO for seven days. This terrifying machine was the only thing sustaining my daughter's life. I became so grateful for its existence.
That first week dragged on. Every day was a routine of waiting for improvement, and it came very slowly. She remained sedated and paralyzed with her chest open. We weren't allowed to hold her while her chest was open, but we kept a vigil at her bedside, quietly reassuring her that we were there. Jacob's parents reluctantly headed home. We found things to do to occupy our minds and bodies. Playing video games in the hospital lobby, going out to dinner, taking walks around downtown Boston. Marin was always at the front of our minds, and only a phone call away. We entrusted her life to the wonderful staff of Boston Children's Hospital.
We trudged through the frigid air and into the warm hospital. This place was so inviting...so welcoming...how could my daughter be dying upstairs? Did the people in the lobby not understand what was going on here? Most of them did, all too well. Parents of children with deformities, defects, kids in wheelchairs...they were all a normal, daily sighting here. This was where they brought their children too, putting their faith in doctors they had only read about. I soon became aware that this was a place full of miracles...that children throughout the world were sent here for treatment. If she was going to die, at least we brought her to the best place possible for what she needed.
The Cardiac ICU smelled of Purell and antiseptic, to this day a smell that immediately brings me back to those metal doors entering the unit. We were let back to see her. There she lay, as she had the night before, still looking almost unrecognizable. Her room was busy. She was under the constant supervision of nurses, therapists, and ECMO technicians. They worked tirelessly to balance the machine's capabilities with what her little body needed to survive. We learned she had lost over ten units of blood throughout the night, and she was being transfused almost hourly. There was still a source of bleeding somewhere, and it needed to be found and stopped quickly. We were taken to a private room, where her surgeon discussed the need to do a heart cath to look for the source, and then most likely go back to the OR to stop it. We agreed, as this was our only hope. We signed the paperwork, being made well aware that the risks listed on the top of the page simply said "Death."
We learned that morning that her cardiac surgeon had cancelled a speaking engagement somewhere out of the country to stay and care for Marin. The thought of this humbled me, and made me realize how important she was to everyone...not just us. He was determined to stay and try to fix her.
After the cath, we were told they "thought" they had identified the source of bleeding, and needed to go back to surgery to redo her repair. Before we left the consultation room that day, my amazing husband did something I will never forget, and something that I have no doubt played a huge part in that surgery; he asked our cardiologist and surgeon to pray with us. They graciously accepted. We sat, holding hands with these Harvard-educated and world-renown physicians, humbly asking God to heal our daughter. I left the room in tears, humbled by these two brilliant men.
Toward the late afternoon, we spoke with her surgeon again. He had successfully stopped the bleeding, but her heart was still in very critical condition after what it had been through. Dr. Mayer uttered a phrase that we would hear almost daily for the next few weeks..."She's not out of the woods yet." He refused to give us any optimism until he himself was able to feel some. I was heartbroken still, but thankful for his honesty.
The next week was full of setbacks, and a few small steps forward. Her body was so swollen from all of the fluids given during and after surgery that her heart and lungs still were unable to function on their own, and she remained on ECMO for seven days. This terrifying machine was the only thing sustaining my daughter's life. I became so grateful for its existence.
That first week dragged on. Every day was a routine of waiting for improvement, and it came very slowly. She remained sedated and paralyzed with her chest open. We weren't allowed to hold her while her chest was open, but we kept a vigil at her bedside, quietly reassuring her that we were there. Jacob's parents reluctantly headed home. We found things to do to occupy our minds and bodies. Playing video games in the hospital lobby, going out to dinner, taking walks around downtown Boston. Marin was always at the front of our minds, and only a phone call away. We entrusted her life to the wonderful staff of Boston Children's Hospital.
Monday, November 15, 2010
Boston
Rain poured as we woke early on the morning of October 29, 2007. We were to board a plane bound for Boston, Massachusetts in a few hours. Jacob pulled the car up to the stairs near our apartment as we prepared to leave for the airport. I said a silent goodbye to our warm and comforting apartment, hoping that the next time I entered I would still have Marin in my arms. That thought seemed too good to be true. How could someone so small survive what was to come? It seemed impossible.
We rode silently in the rain, but I knew we were both screaming inside our heads with anger, sadness, frustration, fear. Jacob later told me that he'd already planned to ask his mom to come to our apartment and take all of the baby stuff out before we got home if Marin didn't survive. I had silently pondered funeral arrangements for her, knowing that if I voiced my fears I would crack. I was drowning in my thoughts. Jacob wore a facade of strength and faith, and I looked to this for comfort. He always knew what to say to reassure me at my darkest times. He still, and has always, knows me inside and out.
We arrived in cold, dreary Boston that afternoon, after many compliments on the plane of what a good baby we had. She didn't fuss once. The winding, confusing city had us lost within minutes, but we finally made it to our hotel. I wanted a stiff drink and some food, trying so desperately to pretend we were tourists in this beautiful city, rather than taking our child to her death.
We arrived at Boston Children's Hospital first thing the next morning for a long day of xrays, echocardiograms, EKGs, blood draws, and paperwork. We met the man that would come to be our hero, Marin's cardiologist Dr. Roger Breitbart. After performing the echo, he informed us that her anatomy was a bit more complex than seen on a previous echo, but still reassured us that although the surgery might be a little more difficult, she would be fine. I tried to believe him.
Since she was so small, the decision was made to admit us to the hospital so she could be monitored overnight before her surgery. Our families flew in later that day and met us at the hospital. My mom and brother had come, along with Jacob's parents, to be with us for the surgery. We said our goodbyes for the night as they left for the hotel, and we settled into the hospital room. That night is still so vivid in my mind. There was one chair that folded out into a "bed," and though against hospital protocol, Jacob and I were both allowed to stay in the room with her that night. We cuddled together with her in the middle, praying this wouldn't be our last night with her. We were given an antiseptic soap sponge to wash her little chest in preparation for the surgery. I stared at her chest, admiring her smooth skin, trying to picture the scars that would soon be there. We soon fell into a restless sleep. I was woken once around midnight to breastfeed. If I had known it would be the last time, I would have enjoyed it more, savored every second of that intimate bond between us.
The next morning came all too quickly. It was October 31, Halloween. Our families arrived back at the hospital. We met our surgeon, Dr. John Mayer, and after a prayer by Jacob's dad, it was time to go. I carried her to the elevator, and we rode quietly to the pre-op area. Jacob and I held her and kissed her one last time, and then handed her over to the surgery team. I lost it. He embraced me tightly, and reminded me to have faith. God had brought us together and given us this special child, and He would take care of us.
The surgery waiting area was full of families. It was a busy place. We checked in and were introduced to our nurse liason, who would come to us with updates during her procedure. Then, we waited.
I took a sedative, and tried to sleep on a couch. Our families tried to encourage us and lighten the mood with jokes and stories, but I only wanted to sleep, and to wake up when it was all over and I could have her back. Minutes turned to hours, and the first few updates were positive. Then, things took a turn for the worst, and Dr. Breitbart came out to speak with us.
He told us she was bleeding severely when they warmed her up, and was not able to come off of bypass. They were going to cool her down again and attempt to find where the blood was coming from. Several more hours went by. We were now the only family left in the waiting area, and it was after 6 p.m. Surgery began at 8 a.m. Dr. Mayer and Dr. Breitbart then came out to speak with us. Marin was still bleeding, and was unable to come off of bypass. She was transferred to a machine called ECMO, which would route all of her blood out of her body, through a machine, then back into her. The machine essentially took over the work of her heart and lungs so they could rest. They were very honest, and let us know how critically ill she was. Dr. Mayer was visibly worried, and did not seem confident of her survival. He told us he had seen worse babies recover, but not many. Our worst nightmare had come true, and we knew we might lose her.
We waited several more hours as they transferred her with all of her new machinery to a room in the Cardiac Intensive Care Unit. It was finally time, and Jacob and I went back to see her.
It was so far worse than I could have imagined. Her chest was left open due to swelling, and every inch of her body was covered in some form of IV or monitoring device. ECMO cannulas in her neck and groin, four chest tubes, temporary pacing wires, three or four IVs, two arterial lines, a ventilator in her mouth, gastric tube in her nose, and brain monitor on her forehead. She looked dirty, and blood had dried on her skin and in her hair. This was not my baby. This was not the clean, content little girl I had handed off just twelve hours ago. Once again, I broke down. Jacob and I held each other, and tried to cope with this new version of our child. We went close to the bed, and could see her heart beating through the thin film that was over the opening in her chest. We stroked her hands, her legs, and let her know we were there, and that we loved her. We said a prayer, and left so our relatives could come back to see her.
We left the hospital and headed back to the hotel. That was the worst day of my entire life, and I pray that nothing will ever surpass it.
We rode silently in the rain, but I knew we were both screaming inside our heads with anger, sadness, frustration, fear. Jacob later told me that he'd already planned to ask his mom to come to our apartment and take all of the baby stuff out before we got home if Marin didn't survive. I had silently pondered funeral arrangements for her, knowing that if I voiced my fears I would crack. I was drowning in my thoughts. Jacob wore a facade of strength and faith, and I looked to this for comfort. He always knew what to say to reassure me at my darkest times. He still, and has always, knows me inside and out.
We arrived in cold, dreary Boston that afternoon, after many compliments on the plane of what a good baby we had. She didn't fuss once. The winding, confusing city had us lost within minutes, but we finally made it to our hotel. I wanted a stiff drink and some food, trying so desperately to pretend we were tourists in this beautiful city, rather than taking our child to her death.
We arrived at Boston Children's Hospital first thing the next morning for a long day of xrays, echocardiograms, EKGs, blood draws, and paperwork. We met the man that would come to be our hero, Marin's cardiologist Dr. Roger Breitbart. After performing the echo, he informed us that her anatomy was a bit more complex than seen on a previous echo, but still reassured us that although the surgery might be a little more difficult, she would be fine. I tried to believe him.
Since she was so small, the decision was made to admit us to the hospital so she could be monitored overnight before her surgery. Our families flew in later that day and met us at the hospital. My mom and brother had come, along with Jacob's parents, to be with us for the surgery. We said our goodbyes for the night as they left for the hotel, and we settled into the hospital room. That night is still so vivid in my mind. There was one chair that folded out into a "bed," and though against hospital protocol, Jacob and I were both allowed to stay in the room with her that night. We cuddled together with her in the middle, praying this wouldn't be our last night with her. We were given an antiseptic soap sponge to wash her little chest in preparation for the surgery. I stared at her chest, admiring her smooth skin, trying to picture the scars that would soon be there. We soon fell into a restless sleep. I was woken once around midnight to breastfeed. If I had known it would be the last time, I would have enjoyed it more, savored every second of that intimate bond between us.
The next morning came all too quickly. It was October 31, Halloween. Our families arrived back at the hospital. We met our surgeon, Dr. John Mayer, and after a prayer by Jacob's dad, it was time to go. I carried her to the elevator, and we rode quietly to the pre-op area. Jacob and I held her and kissed her one last time, and then handed her over to the surgery team. I lost it. He embraced me tightly, and reminded me to have faith. God had brought us together and given us this special child, and He would take care of us.
The surgery waiting area was full of families. It was a busy place. We checked in and were introduced to our nurse liason, who would come to us with updates during her procedure. Then, we waited.
I took a sedative, and tried to sleep on a couch. Our families tried to encourage us and lighten the mood with jokes and stories, but I only wanted to sleep, and to wake up when it was all over and I could have her back. Minutes turned to hours, and the first few updates were positive. Then, things took a turn for the worst, and Dr. Breitbart came out to speak with us.
He told us she was bleeding severely when they warmed her up, and was not able to come off of bypass. They were going to cool her down again and attempt to find where the blood was coming from. Several more hours went by. We were now the only family left in the waiting area, and it was after 6 p.m. Surgery began at 8 a.m. Dr. Mayer and Dr. Breitbart then came out to speak with us. Marin was still bleeding, and was unable to come off of bypass. She was transferred to a machine called ECMO, which would route all of her blood out of her body, through a machine, then back into her. The machine essentially took over the work of her heart and lungs so they could rest. They were very honest, and let us know how critically ill she was. Dr. Mayer was visibly worried, and did not seem confident of her survival. He told us he had seen worse babies recover, but not many. Our worst nightmare had come true, and we knew we might lose her.
We waited several more hours as they transferred her with all of her new machinery to a room in the Cardiac Intensive Care Unit. It was finally time, and Jacob and I went back to see her.
It was so far worse than I could have imagined. Her chest was left open due to swelling, and every inch of her body was covered in some form of IV or monitoring device. ECMO cannulas in her neck and groin, four chest tubes, temporary pacing wires, three or four IVs, two arterial lines, a ventilator in her mouth, gastric tube in her nose, and brain monitor on her forehead. She looked dirty, and blood had dried on her skin and in her hair. This was not my baby. This was not the clean, content little girl I had handed off just twelve hours ago. Once again, I broke down. Jacob and I held each other, and tried to cope with this new version of our child. We went close to the bed, and could see her heart beating through the thin film that was over the opening in her chest. We stroked her hands, her legs, and let her know we were there, and that we loved her. We said a prayer, and left so our relatives could come back to see her.
We left the hospital and headed back to the hotel. That was the worst day of my entire life, and I pray that nothing will ever surpass it.
October 11, 2007
A day that will live in infamy...for our family at least. It felt as though the world should have stopped turning and focus should have been just on us for those days...but as we al know, that doesnt happen. The world goes on, and you learn to live with your new reality.
The days leading up to my scheduled induction became very anxious for me. I began having small panic attacks, but kept these to myself thinking it was due to my swiftly approaching due date. I kept friends and family around constantly to take my mind off of the nervousness. It helped, but something still didn't feel right.
The day came, and I began my induction. As a first time mom, this was scary. Knowing a baby was coming out of me, that life was about to change forever, that now we were completely responsible for another person's life...those were daunting tasks. Jacob held my hand (and my legs) through it all, and at 10:36 the next morning, October 11, 2007, our daughter Marin Avery Varnado was born weighing in at 8 lb, 11.6 oz. She was beautiful....she looked exactly like Jacob, with blonde hair. She was the picture of a healthy baby...and we settled into our first night in the hospital with her. She breastfed well, slept well, and was the perfect child.
The next morning, the nurses took her to the nursey for a well-check before they would release us. I was exhausted, and trying to catch up on rest while she was gone. About an hour later, she returned with Marin, and she let us know that the doctor head heard a heart murmur and wanted to check it out, just to be safe. She reassured us that most heart murmurs are completely harmless and go away on their own. Unfortunately, that was not to be the case with Marin.
Intimidating medical words and phrases became a part of our lives from that day forth. Marin was diagnosed with Double Outlet Right Ventricle and a Ventricular Septal Defect, two congenital heart defects that would require heart surgery in her first year to correct. We were completely devastated. Dr. Crapanzano, our pediatric cardiologist, explained her defects in simpler terms so that we could understand what would need to be done. He apologized for being the bearer of bad news, and told us to follow up with his office in a week. I laid in my hospital bed hurting, physically and emotionally. Mentally, I was a wreck. Always having been a pessimist and a "what if"-er, my mind immediately was immediately sucked into a dark hole of despair and depression. Panic set in. Jacob held my hand and tried to reassure me...but I knew things were bad. I watched my brother, a doctor, as the echocardiogram was performed on Marin, and saw his hopes dashed. He stared out of the window, silently angry with a higher power. This hurt me almost as much as the diagnosis. He and I had become so close throughout all he'd been through, and I knew he hated that we would have to endure this. His later reassurance and optimism through the darkest days of Marin's life were crucial to my emotional survival. He was a brother, a friend, a confidante, and now a doctor that I trusted with my deepest worries and fears.
The days leading up to my scheduled induction became very anxious for me. I began having small panic attacks, but kept these to myself thinking it was due to my swiftly approaching due date. I kept friends and family around constantly to take my mind off of the nervousness. It helped, but something still didn't feel right.
The day came, and I began my induction. As a first time mom, this was scary. Knowing a baby was coming out of me, that life was about to change forever, that now we were completely responsible for another person's life...those were daunting tasks. Jacob held my hand (and my legs) through it all, and at 10:36 the next morning, October 11, 2007, our daughter Marin Avery Varnado was born weighing in at 8 lb, 11.6 oz. She was beautiful....she looked exactly like Jacob, with blonde hair. She was the picture of a healthy baby...and we settled into our first night in the hospital with her. She breastfed well, slept well, and was the perfect child.
The next morning, the nurses took her to the nursey for a well-check before they would release us. I was exhausted, and trying to catch up on rest while she was gone. About an hour later, she returned with Marin, and she let us know that the doctor head heard a heart murmur and wanted to check it out, just to be safe. She reassured us that most heart murmurs are completely harmless and go away on their own. Unfortunately, that was not to be the case with Marin.
Intimidating medical words and phrases became a part of our lives from that day forth. Marin was diagnosed with Double Outlet Right Ventricle and a Ventricular Septal Defect, two congenital heart defects that would require heart surgery in her first year to correct. We were completely devastated. Dr. Crapanzano, our pediatric cardiologist, explained her defects in simpler terms so that we could understand what would need to be done. He apologized for being the bearer of bad news, and told us to follow up with his office in a week. I laid in my hospital bed hurting, physically and emotionally. Mentally, I was a wreck. Always having been a pessimist and a "what if"-er, my mind immediately was immediately sucked into a dark hole of despair and depression. Panic set in. Jacob held my hand and tried to reassure me...but I knew things were bad. I watched my brother, a doctor, as the echocardiogram was performed on Marin, and saw his hopes dashed. He stared out of the window, silently angry with a higher power. This hurt me almost as much as the diagnosis. He and I had become so close throughout all he'd been through, and I knew he hated that we would have to endure this. His later reassurance and optimism through the darkest days of Marin's life were crucial to my emotional survival. He was a brother, a friend, a confidante, and now a doctor that I trusted with my deepest worries and fears.
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