Your precious little feet, little hands, beautiful face, and fighting spirit…. our sweet Milena, you will be in our hearts forever.
“There is something wrong with your baby’s heart. You need to deliver the baby today.” I was in the doctor’s office for my 36 week check up and waited to hear the ultra sound result of my baby’s position since the doctor thought she was in a breech position. I wasn’t ready to hear the news. A million things came to my mind that moment, but one thing was clear: I will do anything to save my baby’s life. I called my husband on the way home and headed to the local hospital right after grabbing my hospital bag. A lot of uncertainty and my absolute lack of knowledge regarding congenital heart diseases somehow kept me from becoming emotional.
My delivery experience was quite different from our first daughter. This time NICU nurses were in the room for any emergency situation, and I was closely monitored. My husband and I were googling about congenital heart diseases until it was time for me to push. Our second daughter, Milena Lynn, was born at 5lbs 5oz on September 2nd, 2016. She was pink and cried loudly right away, to our relief. She was beautiful and looked healthy to me. I could not give up a hope that it was just a mistake. Soon I realized I was wrong. She turned blue and started breathing hard shortly after I started breast feeding. A nurse stopped me, and suggested to give her a bottle of milk later. I was scared. That night I asked nurses to look after her in the nursery while I rested. I did not sleep well. I woke up at 4am and walked to the nursery. Milena was sleeping while hooked up to a monitor. She didn’t look well. I sat down next to her and watched her for a while. A nurse noticed that her condition was getting worse and called a NICU doctor. Around 6 am she was moved to the NICU, and we waited for a pediatric cardiologist to arrive.
Milena had severe coarctation of aorta (CoA -narrowing of the aortic arch), aortic valve stenosis, and mitral valve stenosis. CoA was severe enough that she needed surgery soon before her PDA closed; otherwise, no oxygen will circulate in her body. The pediatric cardiac surgeon in Des Moines was out that week, and she was transferred to University of Iowa where we spent the next two months. I spent the ambulance ride accompanying her and trying to digest everything that had happened to me and my baby in the past 24 hours. This was just the beginning of Milena’s continuous fight against congenital heart diseases.
After series of testing and monitoring, and discussions with her surgical team, Milena had a open heart surgery to reconstruct the aortic arch at 6 days old. The surgery was a success. The joy was suddenly wiped away when I saw Milena’s little body with a large chest incision and countless IV lines, breathing tube, chest tube and monitors hooked up to her arms and legs. I was in shock and hit by the reality of what Milena had to go through. She had a very difficult recovery from the surgery. After unsuccessful attempts to remove the breathing tube over the next 30 days, it was discovered she suffered from multiple complications: pericardial effusion, pleural effusion, and chylothorax. As a result of the chylothorax, she had to be fed a low LCT formula from a tube that prevented her from gaining weight sufficiently. She was kept intubated and on the special diet nearly 30 days with no weight gain. Since she was intubated for so long with sedation, it was a challenge weaning off those medications. Thanks to her medical team, Milena made some progress every day. After 53 days of being in the hospital, she was able to go home with us. It was my first time to be back home since I delivered Milena. Finally our family was reunited under one roof: my husband, our two-and-a-half year old daughter, Milena, and myself.
Milena was able to spend her first Halloween, Thanksgiving, and Christmas at home. She had to stay at home besides visits to doctor’s offices to avoid getting sick, but we enjoyed our time together inside playing with toys and cuddling. She loved being held and playing with her toy piano. She was slowly learning to drink milk from her mouth, but since she didn’t get that opportunity because of prolonged intubation, she struggled. She took almost all of her milk and medication through a g-tube, and we closely monitored her fluid input and output to prevent her little heart from working too hard.
The good times passed so quickly. As she possibly needed more surgeries in the future, we were searching for the best institution to repair her aortic valve and mitral valve. Because the mitral valve is very difficult to operate due to its shape and functionality, we found a team of surgeons who specialized in mitral valve and aortic valve surgeries at Boston Children’s Hospital. We got a referral, and drove to Boston in January (flights were too risky in terms of exposure to virus and her heart condition). On the way there, she started breathing rapidly and was admitted to Boston Children’s hospital when we got there. It was found she had a common cold virus, and her heart wasn’t able to compensate very well. This reminded me of how common viruses we regularly caught can be life-threatening to medically fragile children. She spent two weeks there to recover and received a 3-D echocardiogram while in the hospital. We were released from the hospital as her aortic valve and mitral stenosis were not severe enough to operate at this point as she was still small and would benefit from growing more. It didn’t occur to me that we would be back at the hospital anytime soon.
We were back to our normal routine at home, and hoped to stay home for months and even years until she had to have her next surgery. Milena seemed to be doing very well on her new medication schedule and milk intake regimen. She was working with an occupational therapist and physical therapist at home to improve her motor skills to make up for the amount of time she was in a hospital bed since she was born. As long as her heart tolerated it, we continued encouraging her to learn drinking from her mouth as well.
Everything was going smoothly until one early morning in early March I noticed something was different about Milena. She seemed lifeless and wasn’t breathing. I held her and started rubbing her back while screaming at my husband to call 911. All I was able to think of was when and how I should do CPR on her. My husband and I learned CPR before being released from the hospital just in case for emergency situations like this, but my brain was white out. Minutes and maybe seconds later she started crying weekly. My husband was already talking with the 911 operator, and she dispatched an ambulance to come check on Milena. The ambulance came and went back after putting a heart monitor on her to confirm her heart rate and oxygen saturation were normal. They suggested to call our cardiologist for following up. I was so relieved she was okay, but at the same time, I was very worried this could happen again and what would happen if I didn’t notice….
A few days later we visited our cardiologist, and was told Milena’s echo shows she now has pulmonary hypertension and it was likely time for surgical intervention. We talked about the options. Her condition was too critical to travel to Boston by car or commercial air. We decided to be admitted to Mercy Medical Center to stabilize her, and air transfer her to Boston later. She was fussy and didn’t sleep much that night at the hospital. The next morning, she didn’t tolerate ketamine and got intubated after her breathing got weaker. She was diagnosed with a simple rhino-entirovirus that, coupled with her heart, caused her condition to be unstable. She suffered from multiple hypotension and oxygen de-saturization episodes. We got in contact with our cardiologist at Boston Children’s and lined up an air ambulance to later transport her. With her unstable condition, we asked for an emergency-trained doctor in addition to a respiratory therapist and nurse to be with for a whole trip to Boston. They arrived and tried to move her from her hospital bed to the stretcher. She started having a cardiac arrest. A room full of doctors, nurses, and EMTs were in the room to prepare for her transfer, and they quickly started CPR on her. I stood there helplessly watching her little chest being compressed over and over. She was was given a series of blood pressure increasing medications, also known as ‘pressors’, through her IV lines as doctors, nurses, and EMTs took turns doing CPR. A nurse came up to me and told me “Mom, we will keep going. Don’t worry.” Those words gave me hope and helped me hold myself together. After 40 minutes of great team work, Milena came back. They saved her life. We could not thank them enough. She was moved to the ICU operating room just in case she needed an emergency surgery, and a cold sheet was put under her to rest her organs and brain. The air ambulance left without her. My mom and sister took the earliest flight they could take to fly from Japan after the incident. They got to spend less than 24 hours with her until she was eventually transferred to Boston. I was glad they could meet her for the first time in person. Doctors at Boston and Mercy were closely in contact to stabilize Milena. She was heavily sedated, and had a very narrow range to maintain stability. Two days after her cardiac arrest, the same air ambulance company sent a pediatric anesthesiologist to accompany Milena and manage her meds and sedation. Approximately 8 hours of total trip time from her Des Moines hospital bed to the CICU at Boston Children’s. The pediatric anesthesiologist warned us before we left that she is very unstable and may not survive the transport. I felt suffocated with anxiety, and all I could do was praying praying praying that she would make it to Boston safely.
A familiar building and room at Boston gave me a great comfort. I felt relieved to know that she was in the best care possible for her heart condition. Their plan was to do a diagnostic catheterization to determine the cause of cardiac arrests after Milena got over the rhino entirovirus and weaned sedation. In the mean time, she was doing series of tests including a 3-D echocardiogram. It still looked like her mitral valve stenosis and aortic valve stenosis might be moderate enough to delay surgery further. No new diagnosis was found, but doctors kept investigating what could possibly be causing the cardiac arrests. Ten days after we had arrived, she went into another cardiac arrest. I always stayed in her room during her hospital stay, and I got used to sleeping with the sound of monitor and milk pumps feeding her through g-tube. Nurses were always very considerate to keep things quiet when I was sleeping unless there was an issue. On this night, I heard nurses and a fellow in the room as her heart rate and blood pressure were declining. The monitor began high-alerting. They began CPR and they got to revive her fairly quickly. This reminded us that she was not out of woods like we all thought previously. Catheterization was scheduled for the next day. In the early morning before her catheterization, she went into another cardiac arrest. This time it was longer and worse. The nurse pulled code blue, and in a matter of seconds, nurses and doctors rushed to the room with all the emergency meds and equipment. CPR began again, and she was revived. These were always very scary both during and after, as every time she had cardiac arrests there was a significant risk of brain and organ damage due to the lack of oxygen in her body.
Even though she was very fragile and a high risk for catheterization, the medical team needed to figure out what was causing the cardiac arrests. She went to the cath lab that night with the caution not to move her too much. Doctors found that the left coronary cusp had abnormal functionality and blood flow through her coronary ostia could be getting obstructed during her cardiac arrest episodes.
In the early morning following her catheterization, she had the worst cardiac arrest yet. She didn’t come back. They escorted me out of her room, and called the pediatric cardiac surgeon on call and they started putting on ECMO (heart lung bypass machine) while CPR continued. I called my husband who was sleeping in the visitor room at the hospital. He didn’t pick up. My body was shivering and teeth were chattering. I focused on moving my mouth to ask the nurse to get ahold of him. Shortly after he came running accompanied by a security guard. He was in shock. It was a horrible feeling to explain to my husband who fought so hard along with Milena and tried his best to do everything to save her that his daughter would not survive without life support. So many people were surrounding her, and we could not see her very well. We were scared and overwhelmed. A nurse periodically came to us to update her status. They were still trying to put ECMO on her. Her veins were so small that every nurse had a difficult time putting in an IV or poking for blood on her. Putting ECMO on her neck while CPR was being performed seemed an impossible feat to me. Luckily the surgeon was very gifted and experienced. They successfully completed their job and left to save another life. My highest respect and admiration to those hard working and gifted people.
Milena was hooked up to even more machinery now. She was still in medically induced coma. Her arms and legs were poked so many times in her short life, they had become red and irritated. Every part of her body showed how hard she had been fighting for her life. We were amazed how strong she was. ECMO perfusionists took turns to monitor her and other patients 24 hours to make sure it did not develop any clots in the machine. Days later, we were approached by neurologists. It become evident over the course of this week that she suffered severe neurological injury in multiple areas in both the left and right sides of the brain including the deep regions that are most important and most protected. Our cardiology, CICU, and neurology teams met and informed us she would not be able to make it off of life support. We had to make a decision to end life support – the hardest decision for any parents.
We spent the next precious few days making memories as a family. On April 10th, 2017, she gained angel wings in our arms. We are so proud of her, and honored to be her parents. She taught us the lesson to appreciate the life and not to take for granted what we have. Milena, you will be loved and remembered forever. We promise you to live our life to the fullest until we can hold you again in our arms.