Sydney's Story

Sydney was born January 12 at 10:35 p.m. she weighed in at 6 pounds 9 ounces and 18 inches long. I was amazed at this tiny little miracle, and so in love! The next morning when the Doctor come by to evaluate Sydney he told us that Sydney had a significant heart murmur. He then said that we should not be concerned because a lot of babies are born with them and they usually go away on their own. He wasn't concerned so I decided that I didn't need to be concerned, still in the back of my head something was screaming "No! Not my baby, this isn't what I planned for, she is to tiny, to perfect to have any problems!" As the days went by I became more concerned, she never seemed to wake up. I would have to set an alarm for every three hours then try everything I could to wake her enough to try to get her to nurse. She simply wouldn't or couldn't nurse. On a few occasions her left arm would turn purple and sometimes after we successfully nursed, using a nipple shield, I would notice that her lips where blueish. Our doctor ordered an Echo after I had voiced my concerns to him at our check-up. They scheduled the Echo for when she was 12 days old. After the Echo the tech let us know that the pictures would be sent to Primary's to be looked at by a doctor and we would be notified of the results. Later the evening we got a phone call from the doctor in Salt Lake notifying us that they suspected Sydney to have a major heart defect and would need to be admitted to Primary's ASAP. After a lot of major freaking out and a phone call to my Mom, I began to pack our bags clinging to my tiny baby and wiping my streaming tears off of her face. We took Sydney to the ER, they evaluated her to see if she was stable enough to drive up to Salt Lake with us. Her chest X-Ray showed that her heart was enlarged and that she was most likely in congestive heart failure, also her oxygen saturations where so low that they needed to put her on oxygen. It was decided that she would need to be Life Flighted to Primary's. To say the least I was in shock, my baby had been so sick all along and we had no clue. These past few days she was in our care had to be a miracle, a miracle that she survived she was defiantly a fighter. Here she was with oxygen saturations in the low sixties, in congestive heart failure with tubes and wires all over her, still she fought the nurses as they tried several times to give her an I.V. The Life Flight team arrived around 2 a.m. and successfully gave her the I.V., I thankfully was allowed to go in the airplane with her while Seth and my Mom drove to Primary's.

The next few day's they did many test to pinpoint exactly what Sydney had, her diagnosis was Truncus Arteriosus type 1, this is when the Pulmonary artery and the Aortic artery are fused together resulting in a mixture of oxygen rich blood and oxygen poor blood being sent to her lungs and to her body. To repair this they needed to create a new Pulmonary Artery and put a connecting human valve in to become a separate Pulmonary artery. She also had a hole in the two lower chambers of her heart and the two top chambers. The hole in the two bottom chambers would need to be patched. They scheduled surgery for as soon as possible, her doctors where also worried that the mixture of oxygen rich blood doing permanent damage to her lungs. The next few days where the hardest for me as I watched my baby slowly decline. Sydney's body was getting weaker as each hour came and went, we kept the nurses on their toes as the alarms constantly went off signaling that she was not getting enough oxygen. Those were heart pounding moments, I would find my self holding my breath as I would frantically lift her up and rub her back coaxing her to breath deeper.

Finally the day of surgery arrived I was both relieved and terrified to see it come. Relieved that she would finally get her heart fixed and terrified at the coming struggle that she now would have to face as she recovered. The hardest moment of my life was handing my baby over to the anesthesiologist and just walking away. I remember at that point going into a deep dark depression, I curled up into a ball in the waiting room and could not talk or move. All though my mom and husband where by my side I felt all alone. I was finally facing the reality that I might not ever get to hold my baby again!

We finally got to see Sydney later that afternoon, after about five hours of surgery. She was so swollen and had what seemed like a million doctors and nurses swarming around her trying to get her stabilized. Her chest was left open because her heart was very swollen, also so that the doctors would have easier access to her heart should the need arise. I remember that at one point her heart rate raised to about 210 beats a minute and the amount of doctors and nurses around her tripled as they frantically worked to get her stabilized again. I really started to panic when they paged her surgeon, Dr. Kreatus, I remember taking a seat in the corner and sobbing, sure that my little girl was going to die right there in front of me!

The first 24 hours were touch and go, I became a rabid snarling Mama Bear and refused anyone who tried to get me to leave her side. I did have to leave to pump, but I made sure that ether my mom or my husband was by Sydney's side at all times if I couldn't be.

Sydney slowly progressed each day becoming more and more alert. By about the fifth day, one of the I.V.'s that lead into Sydney's heart had started to leak lipids into her chest cavity. So Dr. Kreatus and Dr. Hawkins decided to open her up, clean out the spilled lipids, and if all looked good close her chest. They also had to start her on a new round of antibiotics, because Sydney had developed an infection in her chest cavity. During the next few days Sydney started having some complications with her lungs, she had a collapsed lung and mucus and blood clots that were making her saturations stay in high 70's-low 80's, they had to scope her lung to re-inflate it and suctioned some of the bigger clots out as well.

Two weeks later on Valentine's Day I got to hold my precious baby again, finally! Oh how my arms ached to rock my tiny angel, I was never content just getting to hold her hand or to stroke her tiny swollen foot, I needed all of her in my arms and next to my heart! The next day we were finally able to take out the last Art line and the pacer wires that were in her heart, then we finally made it out of the PICU and back onto the third floor.

We were able take Sydney home to St. George after being at Primary's for a month, she was on oxygen, antibiotics and diuretics, but we were home! About two weeks later we traveled back to Primary's for a post op. check up, only to discover that Sydney's incision had developed another infection. We were admitted to the hospital again where Sydney was treated with very aggressive antibiotics. After five days we were allowed to leave and head back to St. George. In the future Sydney will need her pulmonary valve replaced as her heart grows, her next surgery will be around the time that she is three. Sydney also has a leaky truncal valve that may someday need to be replaced, and a hole in the top two chambers of her heart that will need to patched probably when she is around 6 or 7. Now we are having check-ups about every 3-4 months with Dr. Etheridge, and we anxiously await the day that we have to go back for more surgery, a day that has me terrified.

This is how Sydney looked after her surgery, swollen with so many tubes and wires coming out of her, keeping her alive!
In this picture she has a sock on her hand because she had pulled out two Art. lines and was caught trying to pull out the ventilator on more than one occasion.

Over two long weeks in the PICU and we finally got to move to a different floor! Yeah we were so excited and thrilled to be out of the PICU!