Heart Mom and advocate, Nicole, is the author of the blog “Perfect Broken Hearts” which is faithfully dedicated to her daughter and (ninja) warrior Abby’s CHD journey. We are incredible honored to put the spotlight on Abby today. Her blog is also a huge way to spread awareness and educate about Congenital Heart Defects. Today, February 24th, marks Nicole’s birthday! Happy Birthday!!!
If you are looking for a story about hope, bravery, and faith, then Abby’s is full of it. This is one awesome young lady who’s conquering her fears and courageously getting through the many storms that come with her CHD journey. She is one of my biggest personal inspirations. Below is Abby’s amazing story, as courageously told by her mom (a story, of course, that will keep writing itself):
“Abby was my first child. My husband and I awaited her arrival eagerly. Like all expectant parents we daydreamed about how she would look, if she would cry a lot or a little, what we would name her, and how life would be different once she arrived.”
“Immediately following her birth, we were told she had a loud heart murmur. I thought nothing of this since the doctor told me they often cleared up on their own in a few days. I had also read something about this in my “What To Expect When You’re Expecting” bible! However, the day for our discharge came and it was apparent that something wasn’t right. Nurses kept coming in and taking Abby for tests. One test lasted two hours. Soon, her doctor appeared in our room and explained that Abby’s heart murmur had definitely not cleared up. They had performed some tests on her and they had made us an appointment the next morning at the nearby children’s hospital with a pediatric cardiologist. The news was unexpected and completely overwhelming. I was suddenly filled with fear and dread. I cried all the way out of the hospital with little Abby in my arms and I cried all the way home. The fear of the unknown was nerve-wracking, wondering what they may tell me the next morning. I couldn’t talk on the phone without crying, my husband had to do all the explaining to well wishers and sympathizers.”
“The next morning dawned early and we arrived for our appointment. After a whirlwind of X-rays, echo cardiograms, EKG’s, we were ushered into a waiting room to wait until the tests were back and the cardiologist could see us. I looked around at the other mother’s. I saw older children who appeared healthy, young babies who had oxygen tubes and tanks to help them breath, a baby with down syndrome and a cute little bubbly four-year-old. They all seemed so at ease in the waiting room. My mother had talked to some of them, asking questions and making friends. I wanted nothing to do with any of them. It was like they were part of some strange club that I wanted nothing to do with. They had their own language that included medical terminology that was hard to understand and frightening. I wanted it all to go away. When the cardiologist called us in to explain the test results I realized however that none of it was going away. We were about to become a part of this unique society. The society was made up of parents of children born with Congenital Heart Defects. Abby was definitely a part of them.”
“Her doctor explained that she had Tetralogy of Fallot, the most common of CHDs (Congenital Heart Defects). Tetralogy is defined by 4 distinct heart abnormalities.
- Ventricular septal defect (VDS)–this is a hole between the two bottom chambers of the heart.
- Pulmonary stenosis–narrowing of the pulmonary artery and valve
- Enlarged right ventricle–this is caused by the overworking of the right side
- Overriding Aorta–the aortic valve has formed in the wrong location.”
“This was all explained and then the questions started….for some strange reason, my first and absurdly largest concern was if she would have her chest cut open and have a scar there. How odd-looking back now that my first thought was about creating a scar on her beautifully perfect little body. I was told, yes, she would need open heart surgery at some point to correct her defect. The scar would run from the hollow of her neck to just below the sternum. We were educated on surgery and the dangers associated with it. We were told she may have some other serious syndromes or diseases. We were told that Tet babies often turn blue when they cry or have a Tet spell. If that happened we needed to tuck her little knees up to her chest. We were then told we would come back monthly for checkups until it was decided to perform the surgery, probably around 12 months.”
“I was emotionally drained and devastated. The cardiologist left my husband, my mom, and myself holding my three day old baby in the room and it was silent for a moment, until I broke down crying. My mother came and took Abby in her arms and put her arms around myself and my husband and we all sat there, crying together.”
“The next few months flew by. We experienced the firsts most parents can’t wait to experience. The first coo, the first smile, the first funny face…so many happy firsts. We also experienced some firsts that many parents will never experience. The first sickness, requiring hospitalization and IV drug administration to clear it up, the first Tet spell, the first emergency room visit. We had the good news that Abby’s chromosomes were all normal–no syndromes or diseases. Abby was a light in our lives. She quickly became the sunshine to my soul and to all those who came in contact with her.”
“In early June Abby had a severe fainting spell. We rushed her to the emergency room and she was admitted to the hospital again. It was decided that her surgery needed to be performed as soon as possible. Her heart was having to work too hard to keep her little body supplied with the blood and oxygen she needed. The surgery was scheduled for Friday of the next week. We took our little girl home on oxygen tubes and tanks and waited. One week. One week until the day we both dreaded but anticipated eagerly. After the surgery we knew Abby would be a healthier more energized baby. She could start to roll and sit and eat and play without wearing herself out. She could cry a little, if her mommy would let her, without any fear of detrimental effects. However, she first had to make it through the surgery, a feat in itself.”
“The morning of June 6 I went into Abby’s little nursery and watched her sleeping in her crib peacefully. I watched her breathing and I watched the slight fluttering beneath the ribcage where her heart beat. The heart that both kept her alive but threatened the very life it supplied. A perfect heart that took in every bit of love and joy this life had to offer. The perfect broken heart. We roused our angel and drove to the hospital, my husband and myself making small talk, avoiding any discussion of what the day may bring. Our children’s hospital sits atop a hill overlooking the city. The morning was just starting with the sun peeking over the mountains behind us. When we got to the hospital, the city lights were still on but the sun was touching the valley. We parked facing the beautiful scene and as I took Abby out of the car her big blue eyes went wide. She stared out across the thousands of twinkling lights and the glowing morning sun. She looked at me and smiled and then turned her beautiful face back to the scene. I choked back tears and knew this moment was forever imprinted on my memory.”
Abby’s 1st open heart surgery…
“Abby’s surgery to repair her Tetralogy of Fallot took place at Primary Children’s Medical Center. Abby was five-months-old when she underwent her repair. We were asked to arrive at 7:00 AM to fill out the necessary paperwork and do all the pre-op. Abby was given some Versed, a drug to calm and partially sedate. She slept much of the time while we were waiting. We met with the anesthesiologist, at which point I became emotional. He explained to us the dangers associated with anesthesia including death, brain damage, strokes, seizures and more. I tried not to cry in front of him. I tried to be calm and brave but the emotions of the day overtook me and I cried. He was kind and patient and understanding. Next we met with Abby’s Pediatric cardiothoracic surgeon, Dr. Gregory Dirusso. He was young, very young with what we had envisioned. He explained Abby’s surgery to us and answered any questions. He told us he expected the surgery to last four hours. Dr. DiRusso was extremely patient. He had the most gentle and compassionate bedside manner since anyone I had met since our dive into CHD began. He was reassuring and positive which is exactly what I needed. I had obviously prepared for the worse, how can you not?”
“It was time for surgery. We walked down a long white hospital hall. I was carrying her in my arms. When we got to the end of the hall to the metal doors, it was time to hand her over to the anesthesiologist. He gently took her from me and waited patiently as we kissed her and as my parents kissed her. She looked over the anesthesiologist’s shoulder as he turned to carry her through the doors. Her big blue eyes were questioning but calm and had that cute Abby sparkle to them. The doors closed and I took a deep breath, turned around to walk to the waiting room and wait. I watched other families come and go and I watched the clock. Around two hours into our wait the nurse called from the OR to tell us Abby was under and was on the bypass machine and everything was going smoothly. Around four hours into surgery I anxiously awaited news. Calls came into the waiting room frequently but none for us. By five hours in I felt that something was wrong. Around 5 1/2 hours into surgery our cardiologist stopped by to see how things were progressing. He happened to be there when the nurse called from the OR. She explained that the repair went smoothly. However, after taking Abby off the bypass machine, the blood pressure in the right side of her heart was dangerously high. They knew it was caused by the pulmonary stenosis which hadn’t looked very bad from the echochardograph. Once inside they realized the stenosis was severe. Because of this they had to stop Abby’s heart a second time, putting her back on the bypass machine to try to relieve the pressure and fix the stenosis. I hung up the phone and explained to everyone waiting with us. Our cardiologist warned us that children who have to undergo the bypass machine two times usually have a hard time recovering. His warning unnerved me. I asked, “Do you mean their recovery is slow or they don’t recover?” He told me, “Both.” The news was hard to digest. I began a silent prayer for Abby and her doctors in my heart, hoping things would be fixed and we would see her soon. Around 6 1/2 hours into surgery a nurse came into the room looking for us. She told us that Abby’s blood pressure was still too high when they re-started her heart and her heart had to be stopped again and she had to go on the bypass machine a third time in an attempt to fix the problem. She told us she would keep us updated and left. The discouragement and gloom that settled in the room and in my heart was suffocating. I began crying. This wasn’t what we were told would happen. We had talked to some friends who had the same surgery and Abby’s doctor all told us that the surgery would run smoothly and in four or five hours time I would be sitting there holding my little angel’s hand and stroking her hair. I excused myself to the bathroom off the waiting room. It was a single bathroom. I locked the door and fell to my knees on the tile floor. I sobbed. I have known discouragement and sadness before but until that moment I had never known anguish so deep it choked the breath out of my lungs and made it hard to breath. I tried voicing a prayer of pleading knowing that God was the only one who could help little Abby. As soon as my thoughts turned to Him, the sweetest feeling I had ever felt washed over me. It filled the little bathroom. There on the tile floor I felt enveloped in love and peace and security. I took a deep breath. I stopped crying and instantly knew that things would be okay. Whatever happened, the Lord was in it and I could handle it. I left the bathroom calm and at peace. A social worker came out and put us in a private, separate waiting room. A sign I knew happened when things weren’t looking good. It was a way for families to be able to gather and share their grief. We went in the little waiting room and turned the lights off. My parents, who had spent the day waiting with us, were upset and emotional. We sat quietly and the entire time, I felt at peace and calm. Then, 8 hours after Abby’s surgery began, her surgeon appeared in our room. He looked bedraggled and exhausted. He didn’t look like a doctor but like a man who just fought the biggest battle of his life. He explained that in order to fix Abby’s high heart rate and pressure they had to cut into the pulmonary valve to relieve the stenosis. This meant Abby’s valve leaked and would until it was repaired at some future time. However, the heart was now functioning better than it had before and Abby was stable. Her chest was left “opened”, meaning they didn’t stitch it up but covered it with a dressing. This was done to allow for extreme swelling and also so that if they needed to get to Abby’s heart quickly to remedy a problem, they could without any trouble. We would be allowed to see Abby in the PICU, where they housed all open-heart surgery patients, in about an hour. We thanked him…awkwardly and ineptly. The peace remained and I felt overcome. Our journey and battle wasn’t over but we reached this summit. An hour later, nine hours after surgery began, this is what we saw…”
“Really Abby was just a mass of tubes and bandages. She had IV’s everywhere, a feeding tube, breathing tubes, chest drainage tubes, pacemaker wires, pulse ox monitors, and more. Her color was pinker than I had ever seen her. The nurses told us to go ahead and touch her. I was worried that she was laying there with no blankets to keep her warm. However, her skin was warm to the touch. I stayed for a couple of hours. Talking to her, stroking her hair, holding her little hand, praying that she could fight the battle ahead of her. She had made it through the surgery, now she needed to recover. We still had the warnings of brain damage, especially due to her extended time on the bypass machine. We were told sometimes coming off oxygen is a fight. We were told that taking the drainage tubes out can also be tricky. Plus, Abby’s difficult surgery could have adverse effects and she could go into heart failure at any time. The first couple days were important. This is what kept Abby alive…”
“The next few days were spent more or less living in the NICU with Abby. I couldn’t bear to leave her side. If she woke up, I didn’t want her there alone and scared. Someone was always with her. Mostly myself but often my husband or my mom would come to “spell” me so I could shower and rest. The third day after surgery they closed Abby’s chest. Her heart was doing better and she was stable and recovering.”
“Granted, her stare was far away and she didn’t seem to notice me there. She was still heavily sedated since the breathing tube was still inserted. The constant ssshhhh sssshhhhh was like second nature to us. I began to be a little fearful that maybe she had suffered some brain damage since her stare seemed vacant and far away. Either way, she was here, she was fighting to recover.
Day five was such a great day for us….”
“The respiratory therapist had been coming by and slowly weaning Abby off oxygen. Little by little he would turn her oxygen down. Day five he decided to take the tube out since she had been breathing mostly room air on her own for a few hours. I was nervous. What if she didn’t breath on her own? She still seemed dazed and mostly unaware of us when she was awake. Was she going to be ready? He took the tube out and she barely made any fuss. A little coughing and sputtering and then just breathing. Breathing that was on her own! I was relieved and happy. I was so exhausted that night I left Abby alone to go and sleep a full night, in an RV borrowed from my cousin and parked in the parking lot. The next morning I arrived in the NICU to this…”
“Do you see it? Do you see it in her eyes? I knew instantly that Abby was alert and comprehending. She knew me and smiled at me. She interacted with the nurses. I fought back my tears as I picked up her hand and kissed her little fingers and played with her soft hair. The recovery from then on sped up. She still had tubes to be removed and some blood clotting issues to overcome. But the fight she fought was tremendous. The words thankful or grateful seem to pale in comparison to the way I feel. To her surgeon and OR team, to the staff who cared for her, to her cardiologist, to family members and friends who supported us, to a Father in Heaven who hears and answers prayers….I am grateful and awed at the sacrifice in behalf of my sweet angel.”
Two weeks later….
Abby’s 2nd open heart surgery… the pulmonary valve replacement.
The blog post titled, “In My Daughter’s Eyes” is beautiful. Abby writes her experience of enduring a second open heart surgery. Here are her words:
“I woke up that morning ready to face what I had to do. When we got to the hospital they took me in for a check-up. They made me put on clown socks and old man jammies. Then we went to the waiting room. The child life specialist Rachelle waited in the waiting room with me. I found Mario Party 8 on the Wii and started to play. Soon a nurse came out and told us that Annie, the baby girl before me, was taking longer than expected. A few hours later Dr. Kaza came out and said that he would be my surgeon. That kind of surprised me because we thought that Dr. Burch would be my surgeon. But I liked him a lot. He explained the surgery and said that next time I needed a valve they probably wouldn’t have to open the chest. I asked if they would put it up my leg. He looked at me astonished and answered yes. About 45 minutes later they came out and said they were ready for me. I took squeezer, my bear, and walked down the hall. I wasn’t really scared… I just wanted it done. When we got to the point where I had to say goodbye I said goodbye and went to the operating room. The operating room was pretty cool. The lights over the table looked like giant lasers. When they put the mask on me and started the air I instantly felt that weightless sensation. I talked until it went black.”
“I remember waking up puking. Apparently I puked three times but I only woke up once when I was puking only to fall back asleep right after. I also was apparently yelling “Mommy I can’t breathe” when I was on high flow oxygen but I don’t remember that either. The first time I really woke up my mom wasn’t there, just a nurse. My dad and the nurse had persuaded her to get some sleep. I was struck numb. All throughout the night I kept waking up every hour asking the nurse to call my mom. I finally got her to call her.”
“The next day I wasn’t very happy, just blah. I didn’t want to do anything but the nurses had other ideas. So I got up and sat down in a chair. I didn’t like it. They also made me use the bathroom. I didn’t like that either. I also had a problem–my back had HUGE knots in them and it made my back sore. My grandma stayed with me that night.”
“THE FOLLOWING PARAGRAPH IS NOT FIT FOR THOSE WHO HAVE ISSUSES WITH BLOOD!
On the third day I was ready to move into my own room. I just had to have the drainage tubes to pull out. When they came I wasn’t too worried it hadn’t hurt when they pulled out other tubes. The one in my side didn’t hurt to pull out but the middle one did. They told me to breathe out when she pulled on the tube–I did as instructed. It was a long tube so I didn’t have any more air to breathe out. I cried out in pain when it broke free from my body. Blood splattered everywhere. I then was moved into my room.”
“I had a lot of visitors the next few days and was slowly getting better. Finally it was time to go home. I was happy to leave but I left a different person. I left with a memory that changed my life.”
“That is my story of my 2nd heart surgery through my eyes.”
Here is Nicole’s personal journey, watching her oldest daughter endure her 2nd open heart surgery…through her eyes…
Day 1..”We were the 2nd open heart surgery of the day at Primary Children’s Medical Center. That means we were assigned the afternoon slot. Surgeries at our hospital are generally assigned by age. Beautiful Annie was having her surgery before Abby. We were praying for both Annie and Abby and their team of doctors which were virtually the same. We arrived at the hospital at 11:30 PM. Abby had nothing to eat since 10:00 PM the night before and nothing to drink since 8:00 AM that morning. She has never been a big eater and she isn’t really that much of a “snacker” so the NPO wasn’t bad for Abby. Upon arrival at the hospital they took Abby back and began the preparations. Her preparations included: height, weight, blood pressure, O2 saturation levels, temperature, and medical history and allergy history.
“Then, our wonderful and amazing Child Life Specialist, Rachelle, came and found Abby…just like she had promised. Rachelle met Abby at the pre-surgery class. I had talked with her about how Abby had a Child Life Specialist take her back into surgery a couple of years earlier when she had an ear surgery. This really helped her. Rachelle told us someone would be there on Abby’s surgery day and stay with her until she was asleep on the operating table. True to her word, Rachelle was there. She did an amazing job calming Abby’s fears and helping her through this time.”
“We were in the waiting room by about 12:30PM. We waited for a bit, watching other kids go behind the surgery doors for their various surgeries. Soon a nurse came over and informed us that she was the bearer of bad news: Abby’s surgery time would be pushed back from the 12:30 PM they were hoping for to 3:30 PM–Annie’s surgery was not done and would take some more time. I could see the disappointment all over Abby’s face. We thanked the nurse for informing us. Rachelle had some other things she needed to go do but, promised to come back soon if we thought Abby would be okay until she returned.”
“After some time she began to complain of how hungry she was. She just wanted to be in surgery. Sometimes the Lord works in mysterious ways. The waiting had a curious effect on Abby. I watched as her fear and anxiety slowly dissipated into restless impatience. She really wanted to get it done and over with…the first time I had heard that form her since this journey began.”
“At 3:15 or so we met Abby’s surgeon, Dr. Kaza. He hates having pictures taken before surgery so unfortunately, we didn’t get one with him. He explained what the surgery entailed. He told us that after looking over Abby’s records and Echo, he thought he could perform the surgery without stopping the heart. I can’t tell you what a huge relief this was for us. After Abby’s last surgery, restarting the heart proved to be difficult, especially the 2nd time. Her heart was stopped and restarted three times during her first surgery. Dr. Kaza went on to explain that Abby needed a 17″ valve. If he could get a bigger one in, he wanted to, so that in the future, as long as the valve lasted, she may not need anymore replacements. We also talked about the very real possibility that if Abby did need a replacement in the future, it could be done without open heart surgery, through a catheter inserted valve. Dr. Kaza had worked with Dr. John Locke at Children’s Boston and thought this would be the way valves were replaced routinely in the near future”.
“He then explained the risks. He explained that on a second open heart surgery, cutting through old scar tissue presents some risks. Abby’s heart already contains scar tissue and this takes a lot of time to cut through and clean out. Additionally, patient’s who have already had their heart cut into can have issues with bleeding. They bleed more profusely and that can be a concern when going in a second time. They have to take their time, cutting a bit and then stopping to make sure the bleeding isn’t too heavy.”
“Then Dr. Kaza looked me straight in the eyes and explained that he couldn’t imagine how difficult this must be for us. I found myself blinking back tears…I cried all over myself right before Abby’s first surgery and I really didn’t want Abby to see me crying before this surgery….I wanted her to know I felt confident in this surgery and her seeing me crying would definitely not produce good feelings of confidence! Then Dr. Kaza said, “I will treat her as if she is one of my own.” Wow! I felt the sincerity of what he said. I knew she was in good hands….extremely capable AND extremely empathetic as well. What more could I ask for in this situation? He left and told us to watch for the anesthesiologist to arrive soon.
At 3:45 PM a doctor dressed in scrubs came through the door, looked around, and said, “this must be my patient.” He was Abby’s anesthesiologist. He came over and explained all the “business” stuff of anesthesia and then said it was time to go. Abby asked him a few questions. Earlier she had been asking us how the anesthesiologist would be able to make sure she would stay asleep. One of her biggest fears was waking up during surgery. We assured her she wouldn’t wake up. She asked Rachelle if she started to wake up if the anesthesiologist would hit her over the head with a bat. We chuckled a little and assured her he used only medicine. She asked the anesthesiologist the same questions. He explained that he sat right next to her bed the whole time and watched her heart rate, breathing rate, and other body functions that told him she was asleep. He explained that all those things slowed down when people were in a deep sleep so he would know she was still sleeping.”
Abby suddenly chimes in, ‘Wow, you have more to do than I thought.’
The anesthesiologist, a perfect fit for Abby, chuckled and replied, ‘Well I’m not sitting back there reading the paper!’
She then said, ‘Well, how do you keep me asleep if I start to wake up?’
He reached onto the bed she was sitting on and said, ‘I’ll hit you over the head with this!’ He had picked up a toy hammer that was on the bed!’
“I think this picture says it all. I don’t know many adults that would walk down this hallway and into open heart surgery like this, but Abby did! She never faltered. She showed me that their was no place for fear, only courage in the face of that fear.”
“, only four hours after starting, Dr. Kaza appeared. He explained that they had finished and everything went not only good, but great…textbook! He was able to fit a 21″ bovine valve in…21″ was awesome. In all actuality, as long as the valve lasts, she won’t need another one put in because of size!”
“She looked amazing compared to how she looked after her last surgery. She had high flow oxygen…her lung collapsed when being extubated. I really was hoping they would keep her intubated all night and let her rest but, everything went so well, they attempted extubation and it collapsed her lung. She was doing okay though, with SAT’s in the high 80′s and low 90′s on the high flow.”
“Our little spunky fighter had done it. She now had the road of recovery ahead of her….once again. Little did I know that even though this surgery was a piece of cake compared to the first one, the recovery would be much more emotionally trying for my sweet girl.”
“Day 2.. She was crying and literally begging for medicine. She kept calling out, ‘Ten! Ten! Ten!’ (meaning the amount of pain she was in on a scale of 1-10) and saying ‘I can’t breath, I can’t breath!’ The nurse was administering something in an IV. I asked which medicine she was giving her, hoping it was morphine. Abby was obviously in a lot of pain. The nurse said, ‘Abby I’m giving you medicine now.'”
“I again asked, ‘What kind of medicine is that?'”
“The nurse quietly, and under her breath, said, ‘Regulan‘. I was so appalled. As if they were calling my sweet girl a liar. They were trying to trick her into thinking they were giving her something for the pain. As if she really wasn’t in pain and she would calm down when she thought she had been given pain meds.”
“Their hypothesis fell flat! They had to call the head nurse in to come see when ten minutes later Abby was still in a full-fledged panic attack and still BEGGING for pain meds. I looked at the nurse and said, “Abby is in A LOT of pain. She needs medicine…for pain.”
“The pain medicine was administered and five minutes later Abby was resting comfortably! The pain was not in her head. What a reminder to me that I am my child’s best advocate.”
“As a mom, I hated watching them force her to do things that caused her pain. My head knew this was all helping her to get better but my heart hurt and wanted them to leave her alone and let her rest! She struggled with some arrhythmias on and off–but they seemed to be leveling off and getting farther and farther between.”
“My mom stayed with Abby the night of Day 2. I went to get some sleep. When I arrived at the hospital the next morning, Abby was not in her CICU bed in room 11. In fact, no one was. A nurse showed me to where Abby was. She was being prepared to move to the floor! She had moved to a different section of the CICU because she would be moved that day! Wow! What great news. She seemed a little more alert and was not taking as much pain meds.”
“THE FOLLOWING PARAGRAPH CONTAINS DETAILED DESCRIPTION
The drainage tube removal was by far, the worst part of the whole experience for Abby. They had give her some pain meds shortly before the removal but, it didn’t deaden enough! The first tube out was the smaller tube on her right side. Abby took a deep breath in and blew out just like instructed. The drainage tube from the middle was excruciating for her. The nurse practitioner unwound the cord holding it in place and then told Abby to take a deep breath and then blow all her air out for 5 seconds. Abby did and the nurse pulled…hard! The tube was longer than I imagined and made a mess all over the nurse and me–including my face! Luckily, my squeamish tendencies disappeared after Abby’s first surgery.”
“With the tubes removed, Abby felt much better.”
“She settled into her new room with visitors….lots of visitors. By the end of the day she was completely warn out with all the visits.”
“Her mood remained sullen most of the time…she would try to smile and act happy but, she was really just tired and warn out and sad to be there.”
“Day 4 began with new jammies from home and talk of discharge! Although we would have loved to go home…I had two concerns. She couldn’t walk the few steps to the bathroom yet without being completely overwhelmed with exhaustion and, without oxygen on her SAT’s were still falling to the low 80′s. Her lung and body needed a bit more rest…at least in my opinion. The doctor’s agreed to let her stay one more day. Which was good. The day provided a lot of time to gain some strength. She was able to walk down the halls a bit.”
“Day five dawned brighter…for all of us. Abby was getting back to herself. Real smiles and real laughs, even if just a few! She was able to take the oxygen off and her SAT’s remained in the low 90′s. By 10:00 AM they were going over discharge papers and ready to send us home. Abby was ready, still tiring easily but not AS easily. She had to continue to use the sporameter to help improve her lung function and she would need to continue to build up her stamina and sleep lots but….we were homeward bound!!!!!”
“This surgery was much easier…on me. The anxiety leading up to the surgery was much worse than the actual surgery itself. Abby, on the other hand, had a hard time during recovery. She struggled with depression and anxiety on levels I wasn’t prepared for. In my eyes, the surgery was quick and so much better than I was expecting. In her eyes, it was hard. The recovery was difficult and the hospital stay was hard. She is full of spunk and fought through, in true Abby manner though! If I ever need to learn about courage in the face of trials and overcoming obstacles, I need only to look to my daughter, and her journey to heal her broken heart.”
“But, time has a funny way of changing things. We thought Abby’s heart was repaired and that life would go on for her, like it does for the big majority of TOF babies. Abby’s road is not the average TOF road though. After her pulmonary valve replacement in 2010, we thought our heart days were over and done with. I had never been more relieved. With the advances in technology, the next time Abby needed a valve, it most likely would be done through a cath in her leg. But, a year later, in October of 2011, we were in for a shock. At a routine cardiology exam that was needed before Abby could have scoliosis surgery, her cardiologist found severe left ventricular dysfunction. Her left ventricle was working at 13%. It was non-viable dead tissue over the entire apex of her left heart. She was immediately admitted, put on milrinone, and put through test after test after test to see what had caused it, why it was happening and IF it would clear up. Unfortunately, the cause is still unknown, and Abby’s heart is in early stage heart failure. She had a pacemaker/defibrillator placed (October 26th, 2011), as she has a huge risk of a “sudden cardiac event.” And, a heart transplant is the only option in Abby’s future. She will slowly decline until she gets “sick” enough to be listed on the heart transplant list. Then, her perfect broken heart will be replaced by a new one. We are thankful this is possible and with today’s medicine and advances outcomes are very positive. But the road ahead is challenging, and filled with uncertainties and Abby’s future looks different than it did two years ago. Nevertheless, Abby is a fighter. Abby is filled with more determination than anyone I know. We will keep fighting and looking forward with hope to a future where her Perfect Broken Heart is healed.”
April 9th, 2012, Abby is listed for heart transplant
April 12-13 2012: The Miracle: “We got to Primary’s at 10:00 AM and quickly found that we were still in the waiting mode. There was no certainty as to when Abby’s new heart would arrive. At first we were planning on some time in the late afternoon. While we were waiting we were given a room on the floor and we watched TV, facebooked, played games…and tried to pass the time. Abby had labs done and an IV started. By 4:00 in the afternoon we were still waiting with no word on time. Abby had been on food restrictions since we left that morning and was starting to get hungry and a bit restless. We were told that it wouldn’t be until at least 10:00 PM…maybe later. We had visits from some fellow heart moms and Abby’s grandparents who drove down from Montana who were at the hospital and by 10:00 PM Abby was tired and hungry. We encouraged her to get some sleep and by about 11:00 she was sleeping and Justin and I decided to do the same. We were told that they were having a hard time placing the lungs from the donor and we still didn’t have a definite time.
I slept on and off, drifting in and out of strange dreams. I couldn’t help but think about the donor family. Somewhere a family was saying good-bye to a special child. They had decided to donate their organs and were now waiting…just like we were. But instead of waiting for new life, they were waiting to watch their child leave this life. The thought was heartbreaking. And the thought that in their moment of anguish and grief, they made a choice that would give Abby a chance at life touched me and I came to understand more wholly the meaning of words that most people only casually use…words such as sacrifice and charity.
At 4:30 AM Abby’s nurse came in and told us it was time to go. Abby’s heart was on its way here and she was due in the OR room to get prepped. We walked down the hallway and Abby looked up at me and said, “I’m a little bit nervous now.” She’s amazing, isn’t she? It was the only time she showed any bit of apprehension or fear, but even though she was nervous, she remained calm. We saw Dr. Kaza who told us the heart was on its way and looked like a strong heart. We told her we would be there when she woke up and left her in the capable hands of Dr. Kaza and his team.
The operation ran smoothly, with regular updates. At one hour in, the lines were all placed. At three hours in she was just going on bypass. At four hours her heart was coming out and the new heart going in. At six hours the new heart was in and she was being taken off bypass. Seven and a half hours later Abby was done. Her old perfect broken heart was now removed and her new perfect heart was beating in its place.
We experienced a miracle…or at least a series of miracles, that have given us a new heart for Abby.
Her recovery is slow but gradual. We are experiencing the ups and downs of recovery. A slow beating heart, missing P waves, high levels or low levels of certain properties of the blood, some valve regurgitation…but all these are common after transplant. All these are things that we are hopeful will clear up within the coming days or weeks. We won’t know anything about rejection or how Abby’s body is receiving the new heart for a couple of weeks. But so far, her team seems pleased with how well the heart is functioning and how well Abby is recovering.
The days and weeks and months ahead seem a bit overwhelming. And I have to admit a part of me just wants Abby’s old broken heart back. The one that wasn’t failing. The one that had repaired Tetralogy of Fallot and nothing else wrong with it. But that wasn’t the path Abby’s heart defect would take her. Instead we are venturing into the realm of the broken heart made whole through organ donation.
We have bright hope that her new heart will remain whole and strong for years to come.”
Dr. Kaza came out after Abby’s heart transplant to let us know how things went and that Abby was stable and looking good. We talked for a bit and my need to know finally got the better of me. I asked if after seeing Abby’s old heart, they may know what had caused Abby’s heart failure. He explained that Abby’s coronary arteries, like many children with congenital heart defects, were malformed. She has extra arteries, small arteries, and arteries that twist and turn in a very complicated manner. During Abby’s very first Tetralogy of Fallot repair, her surgeon, Dr. DiRusso, had a difficult time placing the transannular patch to relieve her pulmonary stenosis because of her complicated coronary arteries. The patch pushed her heart up into an unusual position. As the scar tissue grew it continued to pull her heart into a strange and unnatural position. Ten years later, when Abby needed a new pulmonary valve, the scar tissue had occluded her complicated coronary artery system. The transannular patch that was used during her valve replacement was laid directly on top of her Left Anterior Descending (LAD) coronary artery, which was hidden by scar tissue. The valve which was placed was as large as the surgeon could possibly go, which is a very common practice for valve replacements in children, as it prevents multiple surgeries as the patient outgrows it. The patch pushing down on the LAD and the large valve pushing in on the LAD made a partial occlusion. As the scar tissue began to grow around the stitches of the new valve, it completely closed off the LAD–and the blood flow to Abby’s left ventricle.
Dr. Kaza told me he would take the blame…but that is NOT what I wanted. I did not care what caused the problem. All Abby’s surgeons acted in her best interest. Dr. DiRusso worked with what he had and saved her life in the face of less than optimal circumstances. Dr. Kaza, who has operated on Abby every time other than her first, is a skilled surgeon who acted in a manner concurrent with current practices. I absolutely do not blame anyone for circumstances they couldn’t have possibly foreseen. Abby’s heart and coronary artery anomalies all set up the perfect storm. I have never looked to lay blame. What I have done, is wanted knowledge and understanding. I hope that some one else may benefit from it.Please read further..here: Before Pulmonary Valve Replacement…Please Read This.
Check out Queen Abby now!!