Elaine and Violet (Christmas 2003)

Elaine and Violet making a mess (January 2004)

Elaine enjoying life, in a swing! July 2003

Elaine giving Violet Eskimo kisses. February 2003

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 Medical Center in Salt Lake City. We were still in shock when we went to see Dr. Luciana Young. After a fairly long and stressful ultrasound, Dr. Young came and talked to us about what they thought was going on with this baby’s heart. It was confusing, and very frightening. We told our families, and they were very supportive.

All of the doctors and nurses that we saw were helpful and informative. Our questions were answered as we tried to research about HRHS, PA and the different surgeries that she would have to endure throughout her life time. We also talked a lot to the baby’s maternal grandmother, who was also born with a CHD. She helped us understand what to expect and helped us to be more at peace with the situation. We were shooting for a natural birth and had checkups regularly with the specialist. At a checkup at 38 weeks, the ultrasound indicated that the baby had stopped growing and was only about 4 lbs. An amniocentesis was preformed to check the status of the baby's lungs to see if it was possible for the baby to be born early. We waited at home for the results and got a phone call to pack up and be in Salt Lake as soon as possible, because the baby’s lungs were developed enough to be born and since she wasn’t thriving in the womb, she needed to be delivered cesarean.

It was a long wait once we got to the hospital, but on April 20th 2001, after a long, stressful day, our daughter Elaine Ruth was born at 10:39 pm at the University of Utah Hospital. She was 6 lbs. 1 oz. and 18 inches long. She was immediately whisked away to PCMC, but not before the Life Flight crew stopped in briefly at mom’s recovery room so she could hold her precious baby. It was an emotional moment. The doctors had been accurate in their assessment of her problems. On top of what they had seen, her coronary artery was about twice as large as it was supposed to be because her body had grown a massive amount of collateral veins from her right ventricle into her coronaries. The blood needed a place to go and the extra blood flow caused this abnormality. This added some danger in keeping the pressures in her heart where they were supposed to be.

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. 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, 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.

Her Fontan went well. 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 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.

Even after all that Elaine has been through, she is a joy to be around. She still has memories of her last surgery, but they don’t frighten her. She loves her doctors! We know that she was looked after by people who love her, and we are so thankful to have her in our lives. She loves to color, sing, play outside and climb on everything. Besides the fact that she is small for her age (baby sister shares the same size diapers), no one can tell she has such a problem. She is having a lot of fun getting to know her baby sister Violet Phyliss (who has nothing wrong with her heart) and eating pudding! We have been blessed to have charge of two brave girls, and are glad that we were chosen to care for them. 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.

Elaine is finished with surgeries for now. She has a leaky mitral valve which may require repair, but not likely in the near future. For now we play the waiting game until the left side of her heart wears out and she requires a transplant. Doctors guess that this won’t be necessary until she is an adult. We pray that she may have other options when and if that time comes. Best of luck to all those other’s struggling with their heart children. Just take it one day at a time, and enjoy each day to the fullest.

May 2004 Update

In February of 2004 Elaine began to show signs of 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. Unfortunately one did not arrive in time for Elaine. She had many problems while in the hospital. After five weeks in the ICU she passed away on April 19th, 2004, one day before her third birthday.

It is still unknown as to why she went into heart failure and why it was so rapid. We miss our darling daughter very much, but are comforted by the knowledge that we will see her again. She will be in our thoughts everyday until that day. She was so brave and strived to be pleasant while she felt so terrible. We are thankful for everyday we had her in our lives, and for the great lessons she taught us. Death is not the end, but merely a step towards everlasting happiness.

We love and miss Elaine. Thank you to everyone for your love and support at this difficult time.