2011 UPDATE - Victoria continues to do very well. She is working for the VA and recently bought a house. She lives close to us and we are so glad to have her back in town!
CLICK HERE TO SEE MORE PICTURES OF VICTORIA AND HER QUILT
CLICK HERE TO SEE PICTURES OF CHD DAY IN AUSTIN 2004 Update - 2007 - Victoria is in her last year of graduate school where she is studying Health Care Administation. She is looking for Fellowships to apply for and if she doesn't get one of those, she will soon be looking for a real JOB!
Update - December 2006 -Victoria had a great visit with Dr. Mullins. She was his last appointment before he retired. She was even on TV with a short interview about him. Cool!
September 2006 - Victoria completed her first year of grad school and is working on her second year. This summer she interned at a public health clinic. I think she received lots of experience about running a clinic as it seemed to be a very good experience for her. Right now she is taking 9 hours, working for the school and volunteering at the children's hospital. She had a wonderful checkup with her pediatric cardiologist this summer. She continues to do well!
Hi! My name is Victoria. I have some great doctors. The best pediatrician in the world is Dr. George Toland. He has been taking care of me since I was born! I also have two great pediatric cardiologists. One is Dr. Carlos Monarrez and the other one is Dr. Charles Mullins.
In the above pictures I am standing with my parents, my brothers, and some friends on my graduation day, May 2005, from St. Edward's University. I am now working on my master's degree. Someday I hope to run a hospital.
CLICK HERE TO SEE VICTORIA'S FONTAN ALBUM
Victoria was born 3/31/83, 6lbs, 10oz.; 19 1/2in. long. She has 2 heart healthy brothers - one is 5 years older and one 10 years older. Bobby is 33 and Christopher is 29.
Victoria came home from the hospital at 32 hours old. She was home for one month before we knew she had heart problems. Our oldest son had pyloric stenosis and when Victoria started to vomit and refuse to eat, we were afraid that she too had pyloric stenosis. Unfortunately it didn't turn out that way!
The first time I took Victoria in to the doctor was because of vomiting when she was 12 days old. At this time she weighed 8lb. 4oz. The doctor checked her and felt she was ok. She was due for a regular checkup about 10 days later. At that time her weight was down to 7lb. 12oz. The doctor thought it was probably a scale fluctuation and told me to come back in a week. At this point she was down to 7lb. 8oz and so the pediatrician decided to take a chest Xray and I guess the rest is history! The next morning we were at a pediatric cardiologist in a nearby town. He did all kinds of tests and gave us a diagnosis of tricuspid atresia, hypoplastic right ventricle, coarctation of the aorta, asd, vsd. Of course, at this point she was also in heart failure. The PC told us we needed to get to Houston that night and he made the plane reservations for us. We came home to tell everyone the news and packed for the trip. The weather was bad, the plane was late, and the cab driver didn't know how to get to the hospital! It was an appropriate ending to a terrible day!
When we finally got the hospital all the tests were redone and confirmed everything the local PC, Dr. Monarrez, had already told us. Victoria spent the night in NICU and then after differing opinions from the doctors, they decided to admit her to the pediatric cardiology floor until they did her catherization on Monday(this was Saturday). After Dr. Gutguzell did the cath, it was determined that Victoria needed surgery to repair her coarctation and band her pulmonary artery in order to protect her lungs. She was given one day to recover from the cath, then surgery was done by Dr. Grady Hallman on Wednesday. She has a subclavian repair for the coarctation and a band was put on her pulmonary artery. Recovery went smoothly and we went home 2 weeks after that horrible night when we had arrived at Texas Children's Hospital. She still had some fluid on her lungs, but Dr. Mullins felt that Dr. Monarrez could oversee her care at home. Victoria ended up in the local hospital about a week later because she quit eating. She was in for a couple of days and then they sent us home. Dr. Monarrez told us she was still in heart failure and needed to gain weight in order to grow into her banding.
The next 2 years were difficult. Victoria was a failure to thrive baby and refused to eat. She ended up being ng tube feed for several months. Luckily, Dr. Toland never made me learn to insert it. Victoria screamed every time it was changed and it was hard enough just watching it being done. I took her to the office every 3 days to have it changed. In October 1983, she had her second cath in Houston, done by Dr. Charles Mullins. At this time she was on lanoxin, lasix, and aldactone. During the first two years,she caught everything that went around and seemed to always be on antibiotics. Victoria also had many echoes and we saw the local PC, Dr. Monarrez, quite often during this time.
Victoria's next cath was done by Dr. Mullins when she was 2 years old. She had some problems, so she required a blood transfusion. We were also informed that both of her femoral arteries were blocked and that they would not be able to do a cath that way again.
In April 1989, Victoria had her Fontan. She had a Total Cavopulmonary Connection, which I understand is not done much anymore. Her ASD was patched with Dacron and her pulmonary artery was ligated. Once again, Dr. Grady Hallman did her surgery. The first thing Victoria said to us in the recovery room was "Look at my pink fingers!" The change in her coloring was truly amazing. Victoria was in the hospital for almost 3 weeks. Everything went fairly well and she had no big problems - just the usual Fontan things.
After coming home from having the Fontan, we really expected a growth spurt, but it didn't happen. One year after the Fontan, at age 7, Victoria weighed 37 pounds and was 42" tall. It took her body several years to adjust to her new circulation. She would have various symptoms such as being out of breath and being dizzy. They never turned out to be anything dangerous, but they were worrisome.
When Victoria got to high school, she finally began to grow. She also joined the marching band. Being naive, at first we didn't think too much of it. Our middle son had been in band, so we knew the schedule. It didn't dawn on us that Victoria would have trouble with it. Then Victoria started coming home sick every day after practice. It finally became apparent to us that the South Texas heat and practicing on an asphalt parking lot was going to be a big problem for Victoria without some modifications. The next season we finally got some things worked out so that Victoria was able to have frequent water breaks and a place to cool off in the shade (what little of it there was on an asphalt parking lot). She marched her freshman, sophomore, and junior years. This year, her senior year, the band director was afraid that the new routine would be too much for her, so he encouraged her to play percussion in the pit. At first she wasn't sure that was what she wanted to do, but after a few weeks she was happy that she had taken his advice. This year, for the first time in the history of Victoria's high school, the band earned a slot in the state competition. Victoria was so excited and proud to be part of this honor.
Dr. Mullins, Texas Children's Hospital, did Victoria's 4th cath in August 2000. It ended up being a 6 hour procedure. Dr. Mullins used 4 stents to rebuild Victoria's inferior vena cava because it was very narrow, making the cath very hard to do. He had a hard time getting in the groin as one side was completely blocked. He also had to go in through her neck. He used 2 more stents to straighten out a loop (almost 360 degrees) in her pulmonary artery. It took Victoria awhile to recover, but she has been doing wonderfully ever since.
In May 1983, our one-month-old daughter had just been diagnosed with complex congenital heart defects (CHD) and had been rushed off to Houston for heart surgery. Because the future seemed so uncertain and frightening, we would not let ourselves dream of her doing things like walking across the stage for kindergarten graduation, let alone high school graduation.
But, on May 26, almost exactly eighteen years from the time she was discharged from the hospital for her first surgery, Victoria will be walking across that stage to receive her high school diploma. She will have reached the milestone that parents look forward to for years - one that many parents take for granted.
The road to high school graduation has not always been an easy one for Victoria. After her first surgery as an infant, she underwent several other heart procedures and at the age of 6 she had the open-heart surgery we had been both dreading and looking forward to all those years. Once again, at the beginning of her senior year, Victoria returned to the heart catherization lab, where her pediatric cardiologist did more repairs to her heart.
Through all of her medical procedures, Victoria has shown the special strength and courage that children with life threatening health problems seem to possess. She refuses to let her heart problems rule her life.
Although Victoria was never able to participate in sports, she made playing and marching in the Hawk band her dream. She worked hard to keep up with her peers and to participate in all the band activities. And in academics, Victoria has taken all honors courses, kept her grades up, and she will graduate a Texas Scholar. She has made us very proud.
Can you imagine that Victoria has done all of these things living with important parts of her heart missing? Sometimes it is even hard for us to believe it. She has accomplished so much in the past 18 years - so much more than we had dared to hope she could do.
Of course, Victoria could not have done all of these things without some very special people in her life. She has been blessed to always have people around her who believed she could do anything she wanted. These people have been her angels.
When Victoria walks across the stage in Boggus Stadium on May 26th, she will not be walking across alone. With her will be her band of earthly and heavenly angels who have helped make this day possible.
These angels include her brothers, Bobby and Chris; grandparents, Craig and Frances Grover and Robert and Marybelle; her aunts and uncles and other family members; and Ann Nigro, Victoria's godmother. Also, there are the caring people who made the Children's Clinic our home away from home for so many years, especially, Dr. and Mrs. George Toland, Letty Sanchez, Melba Ramos, and Tina San Pedro. Dr. Carlos Monarrez, Dr. Charles Mullins, and Dr. Grady Hallman also must be included in this band of angels. They have held Victoria's heart in their hands.
And, of course, Harry Nigro, her godfather, will be looking down from heaven, just as proud as can be! We are sure he will have a whole cheering section up there rooting for Victoria.
Lastly, we must remember the courageous heart children and their parents who were willing to let doctors do heart surgery on them when heart surgery on children was unheard of. Without them, doctors would not have developed the life saving techniques that were necessary to give Victoria a chance at life.
How do we thank all of these angels for contributing to our child's chance for a full and happy life? Obviously, there is no way we can thank them enough, but we hope that as Victoria walks across that stage they will realize how much they have helped her to accomplish this transition into adulthood.
January 2002 - Victoria has completed her first semester at college. We sure do miss her now that she is back at college for the second semester, because it was so nice to have her home for the holidays. It's still hard to believe that she is old enough to be out on her own, but we are very proud of the wonderful young lady she has become!
Bobby and Victoria at Disney World, New Year's 2003
Sitting at the Fannin Street Metro stop with Victoria on a warm summer night in 2006, I gazed across the street at the same windows I had peered into some 23 years earlier. We had stayed at the Holiday Inn across the street from Texas Children’s Hospital so that we could be nearby – we were in a hotel room that faced the very building and floor where our daughter was in PICU. Late at night, after the hospital had banished us from the unit, I stared across the street and watched the movement in the window where Victoria lay convalescing. Fear and anxiety had gripped my heart, but tonight, 23 years later, as I felt the hair on my arms stand up, it was not from fear; it was because I realized that we had come full circle.
Victoria was born in 1983 – years before the Internet, online support groups, and routine ultrasounds for pregnant women. We brought her home from the hospital when she was 36 hours old, seemingly a very healthy baby girl. By the time she was two weeks old, she was having feeding problems. By the time she was three weeks old, she had lost weight. When she was four weeks old she had lost more weight and a chest x-ray showed an enlarged heart. The next day we were at the local pediatric cardiologist’s office where Victoria was poked, probed, and studied most of the day. The conclusion was that Victoria was born with tricuspid atresia, coarctation of the aorta, an atrial septal defect, a ventricular septal defect – and needed to get to Houston that night, 350 miles from our South Texas home.
After a catherization, the doctors at Texas Children’s Hospital decided that too much blood was flooding Victoria’s lungs, hence her pulmonary artery needed to be banded and her coarctation repaired. As parents, we were bewildered, confused, numb. We were told her defects were serious and complex. Unfortunately, all I knew about heart defects was something called a “blue baby” and something having to do with a hole in the heart. In other words, my knowledge of heart defects was basically nil.
Victoria’s first few years were very difficult. I quit my teaching job in order to take care of her and did not return until she was 13 years old. As an infant she was fed with a NG tube for several months. She was labeled a “failure to thrive” baby – weighing in at only 12 lbs. at one year and 18 lbs. at 2 years. Her growth continued to be slow, even after the Fontan surgery at 6 years of age.
Today’s Fontan is different from the Fontan of 1989. Then it was done all in one step, it was not done frequently, and it seems it was done at a much later age than it is today. The Fontan was something we wanted behind us; yet, we dreaded it at the same time. We realized it carried risks – we knew we might not bring Victoria back home with us, but we also recognized it was the surgery that would give her the best shot at a near normal life. When Victoria was about four, her doctor told us he would like to wait until she was about ten years old for her to have the surgery. He said that although it was no longer experimental, he would like them to have more “under their belt.” When Victoria was 6, it was evident that she could not wait any longer. Her kindergarten teacher had to carry her on fire drills, and Victoria was getting bluer and bluer everyday.
The bed that Victoria was taken into the operating room on was labeled “Fontan repair.” I will never forget the doctor coming in and replacing “repair” with “procedure.” I think that was the moment that I realized that CHD was here to stay – that there was no “repair” for her defects, just palliative procedures to help her. We were very blessed that she had no major complications, and we were back home about three weeks after her surgery.
Victoria continued to have various symptoms for many years after the Fontan. She often complained of being out of breath. Although I could see that she was in distress, the doctors could not find a reason for her discomfort. This continued until she was 17 years old. During a cath, it was found that her right pulmonary artery was in an almost 360` loop. It was straightened out with stents. Dr. Charles Mullins also used stents to open up her occluded femoral artery so that it can be used for future catherizations. Since the catherization, her she has been mostly symptom free. Just last year, Victoria saw Dr. Mullins for the last time. He was retiring – she was his last patient on his last out patient day.
My knowledge of CHD is more than I dreamed I would ever be able to digest. After the Internet was developed, information I scrounged around for for years was suddenly at my fingertips. In 1994, I began corresponding with other parents of heart children, and now Victoria is an inspiration to many parents who are just starting this journey.
Full circle – that is what I realized we had come. I understand that many of our children will never be cured; right now there is no real cure for a heart that is missing parts and pieces. But that does not have to stop them from living life to the fullest. Victoria has taught me that. Today, Victoria attends graduate school working on a Master’s Degree in Health Care Administration. She is very independent and feisty. Her goal is to someday run a hospital. I have no doubt that she will accomplish it. When Victoria is not in class, she volunteers at Texas Children’s and at the Ronald McDonald House located in the hospital.
That night as I sat at the Metro stop, the hospital in front of me, the school where Victoria attends graduate school behind me, I looked with awe at my daughter, who was once the little baby behind the hospital window I watched from across the street. She was the little girl I worried would not grow up to be a young lady. But today a very compassionate, intelligent, purposeful woman is my daughter.
