Kennedy's Journey
I am a mom of a three month old little girl that had open heart surgery at one week of age. As I sit here and try to put my thoughts and feeling on paper there are no words that can truly describe the emotions that we have felt and dealt with for the last 9 months. As parents of a child with a congenital heart disease you learn so much about life in such a short amount of time. You quickly learn not to take the small things in life for granted. You appreciate the things you have, and treasure every second that you get with your child. Here is our journey in a nutshell. . .
Having a family is the one thing that I always dreamt of as a little girl. After being married for a year and half that dream was becoming a reality. My husband and I learned the middle of May that we were expecting. We were both very excited about the pregnancy and becoming first time parents. The pregnancy went as normal and I had no complications. No morning sickness, nothing. I thought, "This is pretty easy."
Then at 20 weeks we had our routine ultrasound scheduled. Everything was going great. The ultrasound tech was talking away and saying how great everything looked. Then she got to the heart. She was not required to look for defects in the heart but since she had some training in the area she said she always looked. Bryan and I watched as her head tilted from one side to the other. The talking stopped, and you could see the concern on her face. I still remember her telling us "I have never seen this before, but if I did not know any better I would think the baby has Transposition of the Great Arteries. I am going to see if a doctor can see you and explain it better."
Um, wait a minute, transposition of what? Are you sure you are looking at the right thing? What does this mean? How could this be happening to us? We don't have any heart problems in our family. There must be a mistake. . . You name it, it was going through our heads.
I was so scared, I could not hold it in any longer. The tears started to flow. The doctor came in and tried to explain what was going on, but everything was a blur to me. The only thing I got out of the whole appointment was that my baby may potentially have a heart defect and that we needed to set up an appointment in Iowa City for the following week to get everything confirmed. As the week went on we told some of our family members what was going on, but we really did not want anything out because nothing was confirmed. But being from a small town, the news started to spread. We received numerous emails from people trying to reassure us that everything was going to be all right. We had people share their stories about how they were sent to Iowa City and nothing was wrong. This left us with a flicker of hope, but at the same time deep down inside I knew better. I just could not understand why this was happening to us.
After a long week of waiting, worrying, and praying we headed to Iowa City with our parents along for support. Oh, how I wish I could have changed that day. I still remember walking through the hospital hallways, getting checked in, and then waiting in the waiting room. We really did not have to wait long but it seemed like an eternity. My husband and I were taken into a little conference room. A nurse sat down with us and started showing us some pictures of the heart. She started telling us statics, what the risks were, how serious the problems was, etc. Once again I could not take it. I started balling. They were telling me that my baby had a heart problem and they had not even done the ultrasound yet. I knew at that point that we would not be leaving the hospital with good news. I could not stop crying so to comfort me, they put my husband and I in a private room. That was the first of many kind things the University did to make the situation easier and a little more comforting for my family and me. They even moved my name up the list so we would not have to wait as long for the ultrasound.
Then this sweet nurse came and took us into the ultrasound room. The ultrasound was so long and quiet. The ultrasound tech did not say much besides pointing out the baby's different limbs and features. When she was done she left to get the doctor. This too took some time, so once again, we waited and waited. Then the doctor walked in with three other doctors. I looked at my husband and thought to myself "oh boy here we go." Much to our surprise the doctor was pretty sure that the baby did not have Transposition of the Great Arteries. She did think that the baby had a hole in his/her heart, so they quickly scheduled us for an echocardiogram. Much relieved my family and I are now speed walking through the hospital with smiles on our faces. We can handle a small hole in the heart. We get to the pediatric cardiology unit and they take Bryan and I back for an echo immediately. I still remember lying down on that table with a smile on my face. That smile slowly went away as the lady doing the echo stopped making small talk and left to get the cardiologist. After lying on the table for over an hour with my stomach being pushed on the cardiologist left the room and told me to sit up and get comfortable. He came back in with some pictures and a book. It was confirmed our baby had Transposition of the Great Arteries (TGA). Our world came crashing down. I sat there trying my hardest to listen and take in everything the cardiologist was saying, but the only thing going through my head was open heart surgery around one week of age. You have got to be kidding me. My tears started again and this time they did not stop for a very long time. With everything being such a blur that day I still remember the look in the cardiologist's eyes. This was one doctor that truly has a passion for his work. He sat there through my balling and my husband's questions. He waited for us to regroup a little bit, so he could explain more. He was caring and compassionate. This man did everything he could to make the situation as easy as possible. We left the hospital that day with tears in our eyes and everyone with us was very somber. We had a two-hour ride home to start to digest all the information.
When we got home we had a message on the answering machine from the doctor that spoke to us after the ultrasound. She called to apologize for misleading us. She wanted to talk to us again, and plan out the rest of the pregnancy. This was the doctor calling, not a nurse or an assistant but the actual doctor. Wow, once again we were not just another patient that day. They truly cared about us and wanted to make us as comfortable as possible. Once we finally got home and settled in, my husband and I had our first alone time to talk about everything and start to share how we both felt about it. This was a very hard time for the both of us. My husband has always been my rock and my security, but when he was weak himself, how was he supposed to help me? That night I sent out an email to family and friends explaining what we had found out. We immediately received numerous emails of so many supporters. I knew then that we were going to make it through this one way or another. Together day by day we grew stronger and braver. We did everything that we could to help prepare us for what was to come our way.
Once I came to grips with things I emailed the cardiologist from our appointment. I asked him questions and at this point I wanted straight up answers. This was my child we were talking about, so I wanted him or her to receive the best possible care. The University of Iowa had treated us so good at our first appointment, but was that the best place for our child to receive care. As a parent you worry about that kind of thing. I came right out and asked the cardiologist. At our next appointment in Iowa City he looked me straight in the eye and told me he would trust this surgeon if it was his child. That was all I needed to hear. The University of Iowa was the place for us.
The pregnancy went on. As I got farther along I had a lot of extra doctor appointments. I had weekly non-stress tests. We met with the surgeon, and visited the NICU and PICU at the University. Towards the end of the pregnancy my stress level grew. I was ready to meet my baby, but scared of what was to come. All along I was receiving support from family and friends but I needed more. One evening, I got on my carepage and searched for other heart families. I read a few families' stories and left messages explaining my situation. From the couple messages I wrote, I received numerous other messages from other heart moms. They were sharing their experiences and offering support something that I really needed.
The time had finally come. I was scheduled for an induction the night before my actual due date. After work my husband and I headed to Iowa City. Ready or not, we were about to enter into parenthood. After a very easy labor and delivery we had a beautiful baby girl, Kennedy. Kennedy was immediately taken by a team of pediatric doctors. After they had her stabilized I got to give her a kiss and say a very quick I love you. Kennedy was in immediate heart failure and needed oxygen right away. Over two hours later Bryan and I were finally able to see our little girl in the NICU. She was hooked up to a ventilator and had wires everywhere, but she was the most beautiful little girl ever.
Kennedy was in the best hands. She was taken such great care of that my husband and I could not have asked for anything better. Day by day, we continued to learn more about Kennedy's condition and what was to come in the future. Kennedy spent five days in the NICU at the University. We were able to hold our little girl for the first time when she was four days old.
On day five Kennedy was moved to PICU to help prepare her for surgery. In order for her life to be saved she would have to have the arterial switch procedure. Day six and seven of Kennedy's life were two of the longest days of my life. Day six was the day before Kennedy was scheduled for her open heart surgery. The day was filled with consults from different cardiologists and the surgeon explaining what was going to take place the following day. We looked at pictures to help prepare us for what Kennedy would look like coming out of surgery. I cried and cried that day. I can not begin to explain the emotions that I felt that day. It was hard to listen to the surgeon explaining how the next day would play out, but it was a lot harder signing the consent form for the surgery. The whole situation was hard to handle. I had family and friends try to call and talk, but all I did was cry. My baby girl was lying on a hospital bed, very sick. She was so innocent, little, and helpless, but yet there was absolutely nothing I could do for her.
Around 9:30 that night my husband and I left the hospital and went back to the Ronald McDonald House. We needed to leave Kennedy be, so she could rest, and be ready for her big day. I did not sleep that night. I lay in bed and I prayed and prayed. We were back at the hospital bright and early the next morning. We were ready for the longest day of our lives. We stood by Kennedy's side that morning. With tears in our eyes we silently said prayers and tried to come to grips with what was to come our way. Our baby girl whom we have only been able to hold with a pillow was about to go through a major surgery.
Kennedy was taken for surgery that day at 7:45 a.m. At that time, I gave my little girl up and put her life in the hands of complete strangers and God. These strangers were going to fix my little girl's heart, and give her a fighting chance at life. Kennedy was wheeled back to the PICU around 5:00 p.m. Much to our surprise Kennedy went through surgery with flying colors. She was in the operating room longer than they anticipated, only because her surgeon was such a patient man. He waited by Kennedy's side until her bleeding was under control. Kennedy did not have any problems going on or coming off the bi-pass machine. (Try to take that in . . . seven days old and on a heart-lung bi-pass machine.) She did so well that they were able to close her chest up. Something we were told was very unlikely.
Kennedy recovered very quickly and very well from her surgery. When Kennedy was 16 days old we were finally able to see her for the first time with no wires or tubes hooked up to her. That was the day we were able to finally take her home. We finally had our baby all to ourselves. We felt so blessed.
Bringing Kennedy home from the hospital was so exciting, and so very nerve racking. For the very first time in Kennedy's life she was not going to be hooked up to any monitors to let us know that she was all right.
Since Kennedy's first trip home from the hospital we have since been back for another stay because of pyloric stentosis. We have also been back for a follow up cardiology appointment. Something the rest of her life will be filled with. We patiently wait for the next appointment to learn what the next step will be in Kennedy's journey. She may end up with another procedure, or she may not. Right now, the only thing we can do is live in the moment, and thank God for our miracle baby.
I cannot imagine my life without Kennedy. I owe her life to the ultrasound tech, the surgeon and his team, the cardiologists, and the amazing nursing staff at the University of Iowa Children's Hospital. My daughter has given me the strength to walk this journey with her no matter how many bumps are in our way. Together as a family we will take each day as it comes.
Please help spread hope for all the families dealing with CHD.
Bryan, Tami, and Kennedy Eggers
Andrew, Iowa