Her heart function began to slow and SAT’s were dropping. Her Fontan went ok. She ended up staying in the hospital much longer than expected because she contracted RSV while at the hospital. This made recovery very difficult. She had a difficult time getting her pressures up in her heart, it take a while for the body to adjust. She had a real hard time keeping meds and food down. She had a lot of drainage from her right chest tube. Her baby sister Violet was only 2 months old during this stay at the hospital, so the room was very crowded.
When we were six months pregnant we had a routine ultrasound at our doctor’s office. They technician wasn’t able to get a good look at the baby’s heart, but could see that it had four chambers. During the ultrasound the technician thought that there may be a problem with the baby’s bowel because it looked like it was denser than it was supposed to be. The doctor wasn’t too concerned, but sent us to see a perinatologist (specialist) at the hospital just to be on the safe side. They were supposed to check out the baby’s intestines and also try and get a closer look at the heart since the baby hadn’t been cooperating that day. Needless to say there was absolutely nothing wrong with her bowel. It ended up being a faulty monitor that caused the discoloration, but the specialist did get a closer look at the baby’s heart. We were moved into another room with better equipment so they could get a better look at was going on. The doctor told us he was afraid that our baby had something wrong with her heart. The right ventricle was less than half the size that it needed to be, and there wasn’t any sign of a pulmonary valve.
When we heard this, our stomachs fell through the floor. It is such a shock when you first hear that your baby has a severe heart defect. We immediately had an appointment made for the next evening to be seen by a pediatric cardiologist at Primary Children’s
All of the doctors and nurses that we saw were helpful and informative. Our questions were answered as we tried to research about
It was a long wait once we got to the hospital, but on
Elaine spent 5 days in the NICU. These were probably the hardest days. Everything was new and intimidating. The meds that she was on to keep her PDA open caused her breathing to slow. She would often stop breathing. This was very frightening, to watch as the nurses would help her begin breathing again, and again. Eventually she was placed on a ventilator. She then had a central B-T shunt placed in her. The surgery had to be preformed twice because the first shunt clotted off. She was reopened and a new shunt put in. This was done by Dr. Gregory DiRusso. She then remained in the PICU for about 2 weeks. She did well. When Elaine went home at 3 weeks old she was on oxygen, coumadin, captopril and a variety of other meds. Mom had to learn to insert an ng tube for feeding, but never had to use her skills, thank goodness.
Elaine was small, but did very well recovering from her ordeal. She was off oxygen at 2½ months. She then had her Glenn done by Dr. John Hawkins, in October of 2001 at 5½ months old. She was in the hospital only 5 days! She was such a cute girl and learned everything so fast. She took a little longer than usual to roll over, crawl and walk, but that it to be expected. She had a large lump on her chest that we were told was her zyphoid process (a triangular bone), which stuck out instead of laying flat like it is supposed to. When this happy, loving girl had her Fontan three days after her 2nd birthday, we found out that it was actually one of the wires holding her sternum that had come loose and was poking her. Since it was so painful, her body had grown a cyst around it to protect itself. It was removed during the Fontan.
After her Fonatan she had a leaky mitral valve which we thought may require repair, but not likely in the near future. After that we played the waiting game. until the left side of her heart would wear out and she required a transplant. Doctors guessed that this wouldn’t be necessary until she was an adult. During the next year we were able to do a lot of fun things with Elaine. She loved Buzz Lightyear from Toy Story and the Wiggles. She would dance and sing. She really liked Snow White and playing dress up’s. We were able to have a video camera to record a lot of her. She was so happy and compassionate.
Even after all that Elaine had been through she was a joy to be around. She still had memories of her last surgery, but they didn’t frighten her. She loved her doctors! We know that she was looked after by people who love her, and we are so thankful to have had her in our lives. She loved to color, sing, play outside and climb on everything. Besides the fact that she was small for her age (baby sister shared the same size diapers), no one could tell she had such a problem. She had a lot of fun with her baby sister Violet Phyliss (who has nothing wrong with her heart) and eating pudding!
In February of 2004 Elaine began to show signs of heart failure. She was taken to the Pediatrician and told it was a cold and prescribed cough medicine. When things got worse the E. R. said she may be coming down with an ear infection. In reality she was in extreme heart failure. She was admitted to Primary Children's Hospital on the 15th of March. She was soon placed on the transplant list for a heart. She remained in the ICU for the last 5 weeks of her life. As she began growing worse she refused to eat and different organs began shutting down. It is the hardest thing to see your child suffering beyond all comprehension, and know that there is nothing you can do to ease that pain. Elaine tried to remain happy and would still smile for us, even at the end. Eventually she got an infection in her blood stream. Most likely a result of all the PICC lines, IV’s and tubes she had running through her body. The infection ruled out the option of ECMO. They could treat her infection, but knew she wouldn’t live through it without a new heart. The infection also made her not eligible for a transplant and was taken of the list. One of the hardest things was that Elaine was on so many Med’s and liquid food that her volume intake was so much greater than what she put out. Her kidneys weren’t working. She was only allowed 2 Tablespoons of water every 2 hours. Her mouth was so dry and chapped lips that were cracked and bleeding. Ice water was her all time favorite drink, and we couldn’t just let her have what she wanted so she could be a little happy.
Unfortunately Elaine did not receive a new heart. There weren’t any other options for her at the time. The Pediatric LVAD ( Left ventricular assist devise) had not been approved/developed for infants and children. She may have been able to hold out had she had other options. Elaine had many problems while in the hospital. We watched her be intubated one last time, injected with all kinds of drugs to keep her heart beating. After five weeks in the ICU, there was nothing more to be done. She passed away on
A heart child comes with stress, problems, meds and all kind of things you never knew existed, but along with all that is the love and tenderness that is so abundant with that child. We are thankful and blessed to have had Elaine in our lives, even for such a short time. We love to talk and laugh about her, and remember her smiling face.
Sometimes it feels like yesterday, but most of the time it feels as though it has been an eternity already. Her sister Violet is heart healthy, and she now has a little brother, Ashton, who is also heart healthy and another sister Myra who is heart healthy, and a second heart healthy brother, Vaughn. Our greatest concern is that more isn’t being done to raise awareness about CHD’s. It is a real thing that people struggle and live with everyday. We want people to know what to look for, have babies adequately tested when they are born, and have medicine advance so the heart kids are given more of a fighting chance. Please know that we promote awareness for others, for the increase in knowledge and the benefit of human life.