Lily
On December 4, 2008, our perfect world ended. What we thought would be a very normal, routine pregnancy turned out to be a long and winding road filled with many tears, much anxiety and uncertainty, and finally joy. The kind of joy only a baby can bring, no matter how perfect or imperfect she may be.
At the end of August 2008, my husband and I found out we would be expecting our second child. We were overjoyed at the thought of having another baby. The pregnancy progressed very normally and we looked forward to finding out at the beginning of December whether we would be having another girl or if we would be expecting our first son. We invited both of our mothers to come with us to our ultrasound since neither of them had experienced one before. Everything was going very well and we found out we would be having another girl. The sonographer was having a little trouble getting a good view of the heart, as she put it. I didn't think this was any cause for concern. Like she had said maybe the baby was just in a bad position. She was just wrapping up the ultrasound, so our mothers decided to leave and my husband needed to get back to work. Never did I think I would be receiving such terrible news, and the people that I count on most in my life had now gone home or back to work. I was taken into the Dr's office where she explained they were pretty positive that our baby had a congenital heart defect and she would be referring us to the University of Iowa for further diagnosis. The ride home was horrible. The words "congenital heart defect," "open heart surgery," and "possible death" kept running through my head. I sobbed the whole way home. Trying to explain the situation to my husband was even more difficult. There were so many uncertainties at this time. Waiting for our trip to Iowa City to find a diagnosis for our unborn daughter was exhausting.
Once we were in Iowa City we met with a high risk obstetrician, had another ultrasound and finally a fetal echocardiogram. The fetal echocardiogram was supposed to give us the information that we really wanted: what exactly was wrong with our baby's heart. To our dismay, they could not give us a clear diagnosis, leaving us with even more questions. From December 2008 through April 2009 we made many trips to Iowa City for more ultrasounds and fetal echocardiograms. Each time we thought maybe we would get our answers. And each time, we left Iowa City with no more answers than we had come with. We would have to wait until our little girl was born.
On April 22, 2009, Lily Mae Duve was born by cesarean section. She looked perfect; 10 fingers, 10 toes and a headful of hair. I got to see her briefly before she was whisked away to the neonatal intensive care unit. It would be almost 6 hours before I would get to see my baby again. When I got to see her she looked like an angel. She was perfect in every way and she was doing wonderfully. Although she had many wires attached to her, her only support was from a nasal canula feeding her room air.
I spent a lot of time in the NICU over the next few weeks and in the process, learned more about the heart than I thought I could ever learn. My little girl had quite the attitude and boy was she feisty! All good characteristics to have, knowing what was in store for her. Those first few days were extremely difficult for me. Lily was only allowed to eat 5 CC every 3 hours. That is 1/6 of an ounce! I learned that giving too much milk too soon stresses the heart and makes it work harded. Slowly, she was able to drink a little more and she also go to feed from a bottle instead of through a tube. She took right to the bottle like a champ! By the time we left the NICU she was able to eat 20 CC every three hours. Over the course of the 12 days we spent in the NICU, Lily had many echocardiograms, each confusing the doctors even more. They just could not figure out what was going on with my little girl's heart. Finally, after several conferences with other doctors, they determined that our daughter had a Criss-Cross Heart, Transposition of the Great Arteries, a Ventricular Septal Defect and mild Pulmonary Stenosis. Criss-Cross Heart is an extremely rare congenital heart defect in which the right atrium and left ventricle are more closely associated as well as the left atrium and the right ventricle. Blood flows in a criss-cross pattern instead of the normal downward or upward flow. Our cardiologist could only recall one other case she had heard of in her many years of work in the field.
Although Lily's defect was extremely rare, the repair was relatively common. Lily would have a three stage repair. The first stage would be to place a shunt between the aorta and the pulmonary artery to direct more blood to the body and less to the lungs. Lily was moved to the Pediatric Intensive Care Unit on May 2, 2009. Her surgery was scheduled for May 4, 2009, first thing in the morning. The Sunday night before her surgery we had Lily baptized and we got to hold our little girl and snuggle with her as much as we could. It was always in the back of our minds that this might be the last time we get to hold our little girl. You ever know what God had in store for her, so we soaked up every minute we could get with her.
Monday morning came too quickly, and one of the hardest things we had to do was let our precious baby go into the operating room with people we didn't know, but had to have total faith in. We prayed that God would guide our surgeons hands and help our little girl get through her first surgery. The surgical plan was to place a BT Shunt and close off her PDA (Patent Ductus Arteriosis). After hours of waiting, the surgeon came to talk to us with some disappointing news. The closing of the PDA was successful put the placement of the BT Shunt was not. The shunt was in, but everytime they would clamp off the pulmonary artery her heart would not beat correctly. All of this meant that they would be going back to look for another surgical plan for her.
When I saw Lily for the first time after surgery, I wanted to fall to the floor and sob. She did not look like the baby that I had sent in. She was gray in color, limp and had tubes and wires covering her entire body. I sat down on the couch in her room and just cried. Not only did they not "fix" my baby, they gave her back to me looking worse than any parent can imagine. The next few days I did nothing but cry. I felt extremely helpless and I knew another surgery was just around the corner.
Two days later, Lily was wheeled down to Pediatric Cardiology to have a cardiac catheterization. They felt as though they could get a better look at her heart by performing the catheterization, and therefore, make a more informed surgical plan. The next day the surgeon came in to give us his plan. On Friday, Lily would go into surgery and have her Aorta and Pulmonary Artery combined into one large artery and they would use the BT Shunt to direct her bloodflow. Our surgeon said he hoped this would work. Hearing those words, "hoped it would work," left us feeling very nervous. This really was her last resort.
Friday approached and again, I had to watch my baby girl being wheeled away from us, not knowing if she would be coming back to us. But, our Lily is a fighter and she fought through her surgery and came out looking great. She looked nothing like she had after her initial surgery. She had color in her face, and although she was attached to many tubes and wires, she looked healthy. Lily made huge strides in the next couple days. Each day a tube or wire was removed. In three days Lily was down to only her nasal canula again and we were leaving the PICU. This little girl had two open heart surgeries and a cardiac cathertization in one week, and only three days later she was heading to the general Peds floor. She was and is our miracle baby. Lily spent 5 more days on the general Peds floor and was released on May 16, 2009.
Our journey as a "heart family" is only just beginning. Lily will have two more surgeries, one at about 6 months old and the third surgery at about three years old. This journey has brought us closer together as a family and has reminded us just how fragile life is. We are reminded everyday how blessed are to have our baby girl home with us, but the reality is, she can be taken away from as at any moment. Congenital heart defects come with unpredictable outcomes. Only further research can ensure that more babies with congenital heart defects can come home to their families!
Jesi and Russ Duve
Parents of Lily Duve