Ryan and I first found out that something was wrong with Adalind at our 20 week ultrasound. We were very excited for that visit as it is the first time you get to see your little baby and you can learn their gender. We figured out something wasn't right almost right away. Our ultrasound tech was a bubbly, talkative sort of person but after about 15 minutes she got very quiet and kept looking at the same spots over and over. I was too afraid to ask her if anything was wrong. We met with our Nurse Midwife after the ultrasound and she told us that our baby had a cyst on her kidney, a cyst on her brain, and a mass on her heart. Our Midwife couldn't tell anything more than that since she was too small. I cant even begin to explain the shock, fear, and worry after hearing that. I tried to hold it together as our midwife explained the next steps but ended up burying my face against Ryan and crying. I was so devastated and at that point we didn't even know if she was going to live. I went home, held my belly, and begged her to live. I begged God not to take her from us. It was a very hard day.
Soon after, we met with a neonatologist and a pediatric cardiologist in St. Cloud. We were told that the cysts weren't an issue however she had severe Pulmonary Stenosis and a small tricuspid valve. I remember being in shock during and after that appointment. I kept looking at Ryan and saying "this isn't real... this cant be happening". Ryan was much more stable than I was. He would just hold me and tell me that she would be fine. That we shouldn't worry until we had all the facts and that we would just deal with everything one step at at time. I don't know what I would do without him.
It's not entirely known what causes congenital heart defects although sometimes it can be passed genetically. We did end up doing the less invasive genetic tests but those came back negative so it's likely that this just happened by chance. Once we were seen in the cities we found out that the pulmonary stenosis and a small tricuspid valve lead to the right side of her heart not developing as it should so she has now been diagnosed with a rare and severe congenital heart defect called Hypoplastic Right Heart Syndrome (HRHS) with pulmonary atresia and tricuspid atresia.
The unfortunate thing is that we wont know all the treatments she will need until she is born. They can only tell so much from an ultrasound and babies bodies are all different on how they react to their conditions. Sometimes when they are born they have additional health issues, complications, or just fail to thrive in general. She could end up needing fewer or more procedures than what we are currently planning for. For now we are staying positive and being as strong as we can for our little girl. Our current plan is that treatment will consist of 3 surgeries to be done at Abbott Northwestern Hospital. A shunt will be placed when she is roughly a week old to divert blood around the blockage in her pulmonary artery. She will then need the Glenn shunt surgery at around 3 months old, which will disconnect the superior vena cava (the large vein that brings oxygen-poor blood from the head and arms back to the heart) from the heart and attach it to the right pulmonary artery. Blood will then flow passively to the pulmonary artery and to the lungs. Lastly, she will need the Fontan surgery at around 3 years old, which will disconnect the inferior vena cava from the heart and attach it to the pulmonary artery. After this operation, all the deoxygenated blood from the body will go directly to the lungs without passing through the heart. These surgeries are usually not a fix and are only to stabilize the heart until technology for heart transplants is further along. All heart babies are different and they aren't sure when she will need a heart transplant. It could be when she is in her 20's or even into her 70's, we will have to wait and see.
We have named our little girl Adalind Nicolle. Ryan chose Adalind because with everything she will go through, he wanted her to have a strong name, and Nicolle is my older sister and dearest friend. We have had overwhelming support from our friends and family here in Minnesota. Adalind is so very loved by her mommy and daddy and we pray everyday that the surgeries for our baby girl will be successful. Thank you for your prayers and support.