Andrew's Story
The purpose of this letter is to inform you of the inside lives and heart aches of a family who has walked the journey of congenital heart defects (CHD) and to honor those children who are fighting for their lives and the far too many who have lost their battles. Just three years ago I didn't even know what a CHD was. And today, our lives are forever changed because of the courage of one little boy we know and love…our son. Our hero. ANDREW.
My husband, Craig, and I tried to have a baby for almost 2 years. Our struggle with infertility was very trying and challenging for us. Where many couples would let this distance them, instead my husband and I became closer to each other and to God as we prayed together for God to bless us with a child. In God's perfect timing, we were told that In-Vitro Fertilization was our only option. We wanted a baby so badly. We knew we had to try. We were ecstatic when we discovered we were pregnant. I had never felt such joy in my entire life. We knew that our baby was a true miracle, and became excited planning and preparing for the arrival.
When I was 20 weeks pregnant we went in for a routine ultrasound. We brought my mom along, prepared to show her the baby and have fun watching him/her wiggle around on the screen. Never in a million years could I have predicted what would happen next. The technician seemed concerned, and the ultrasound took a really long time. My heart sank, because I just knew something was very wrong. She finally went to go get our doctor, which concerned us a great deal. The doctor took a look and concluded that there was "possibly" a problem with our baby's heart. She sent us on to the perinatologist. We were so scared and devastated. We had been through so much already with trying to conceive, thinking that would be our main obstacle with this pregnancy. The truth was, that God wanted to teach us so much more.
The perinatologist completed a long ultrasound as well, and told us that our baby had Tetralogy of Fallot and a very small pulmonary artery. I had no idea what that meant, and I was in such shock that I couldn't even think straight. He recommended we do an amniocentesis right away. I had always been against those tests, confident that our baby would be okay, and sure that we wouldn't do anything to jeopardize the baby's health in any way. After what seemed like hours of walking around the hallways, in tears, trying to talk and figure out what we were going to do, we finally decided to go ahead with the amnio. I was still in shock and the long needle didn't even phase me as I watched it on the screen enter my sac so close to my baby's head.
I still can't recall much about that appointment, but the word devastated doesn't even come close to what I was feeling. I remember coming home and collapsing into Craig's arms and sobbing the rest of the day in a dark room, into the night. I couldn't think. I couldn't eat. I had no words. Only tears. Only three years prior to this I had lost my father suddenly. The feelings I felt that night easily compared to the way I was feeling the night my father passed away. Extremely painful and too unbearable to describe.
The two week wait for the results of the amnio was excruciating. In that time, my husband and I became as much at peace as we could be, and decided that whatever the problem was, and if our precious baby had any other chromosomal issues, that we would trust in God and have faith that everything would be okay. We were convinced that our baby was a true fighter and meant to be in the world. We were given the option to terminate the pregnancy. That was not an option for us. If God wanted to take our baby, that was HIS decision, not ours. We had no intention of terminating. The long awaited results of the amino finally came and cleared our baby of any other medical issues. Praise God! We now could concentrate on an isolated heart defect, research and learn all we could about it before the arrival. We felt very blessed to know this information before our baby's birth, as it gave us time to think about things and let it sink in. It also let the doctors prepare so when it was born they would know what to do right away.
We also decided in this time, that at our next ultrasound we wanted to know the baby's gender. We had originally planned on being surprised, but now we knew that the day of delivery our main concern would be if our baby was alive and breathing, not if it was a boy or a girl. We longed for something positive on this journey, and we felt finding out the gender would take some of the pain away. And it did! We opened the envelope with the results from the amnio on Christmas Eve and discovered we were having a boy! I had never felt so happy and excited, as I already felt a bond with a little boy.
The rest of my pregnancy went well until a routine doctor's appointment on January 29th when I was just 34 weeks pregnant. An ultrasound showed that the baby had not grown since our last appointment a month ago, and my fluid was low. This meant that he only weighed that of a 30 week gestation, and I was certain that he couldn't live if he was born that tiny. I was put on immediate bed rest but sent first to do a non stress test. The NST showed I was having minor contractions, which I didn't feel. But they sent me to the hospital, just in case. I remember laying in the bed hooked up to the monitors, waiting for someone to come and tell me when I could go home. Lunch came and went. I didn't order from the menu because I was surely not staying there that long! The same thing happened with dinner. I refused to believe that I would be remaining in the hospital and very possibly delivering our baby that evening.
The one thing I do remember from that evening after we had talked to the doctors and our visitors had gone home…when things finally settled down, God's presence had never been more near to me. I had been told by my doctor that if baby's heartrate dropped too many more times as I was contracting, that they would have to deliver him. I layed in that bed and stared at the monitor, just watching his little heart rate for hours and talking to God. Praying for HIS will to be done. If that meant our baby was to be born that night, then that is what I prayed. I prayed that he would survive outside my womb, being born so early. I prayed for peace, because I was terrified. I needed some sort of comfort, and God gave that to me during that dark time. I felt a wave of peace come over me that I had really never felt before. I KNEW God was there with me, along with my dad, my guardian angel. It was a very special moment and right then I knew that whatever path was chosen for our baby, that everything would be okay.
Before we knew it, about 1:00am the nurse came in and began to hustle around the room. I knew it was time. The baby's heart rate was dropping with each contraction I had, and this concerned the doctors. They assured me that he would most likely live better in the world at 6 weeks premature than inside me. I was soon being wheeled to deliver our baby via c-section. The hospital was stark and silent at such an early morning hour- and suddenly a whole team of doctors and nurses just appeared as if from nowhere. They knew the team needed to be ready to whisk baby away to the NICU. This whole experience was another work of God… if we hadn't had that doctor's appointment that day our baby would not have survived. I was again terrified. How could my baby live with a heart condition and be 6 weeks early? I knew the situation was very serious, but was very grateful I was in good hands.
The most beautiful sound in the world came at 2:26am when we heard our son Andrew's first cry. He was alive! I can remember watching them take him over to weigh him and seeing his tiny limbs and his full head of dark hair. I was instantly in love. My husband cut the umbilical cord, and was able to bring Andrew over to me for just seconds as I ran my finger over his precious head before they whisked him off to the NICU. I sent Craig to be with Andrew as I lay there feeling numb, unable to believe he was here and he was breathing on his own, and thinking of the long road ahead. We didn't get to hold and cuddle our newborn baby as most couples do. My arms ached to hold him. To see him. We didn't even have a camera that night, as it all happened so suddenly. Our first picture of him and the first time we held him was the next afternoon, when he was already one day old. He weighed only 3 lbs 13 oz.
For the next five weeks we lived in the NICU. It became our new home and the nurses and doctors, our family. I spent countless hours sitting by Andrew's isolette, only able to touch him through holes in the sides. I stroked his tiny hands and feet. I sang to him, read to him and talked to him. I told him over and over again how much I loved him and how proud I was of him. Every moment was precious. Time was of the essence.
It was only 6 short days later when we learned what it was like to watch your child being wheeled down the hall for a major open heart surgery. As I kissed him that morning, I honestly didn't know if I would ever see him again. I just wanted to take him and run away. He weighed just under 4 pounds and was the smallest baby to have this procedure done at this hospital. The tears flowed freely as I again collapsed into my husband's arms, feeling incredibly helpless.
Andrew has been a fighter since he was conceived. He was determined to be in this world, and stay here. We have seen God's work by watching Andrew every day. We have witnessed many miracles in our lives. Andrew's surgery was a success, and he recovered well but remained in the NICU until he came home on March 5, 2007. He was 5 weeks old and weighed just over 5 pounds.
The days at home were joyful, but they flew by and we knew Andrew's need for another surgery was approaching. His second open heart surgery was the complete repair of Tetralogy of Fallot. He was almost 7 months old. The day of the surgery Andrew was away from us for 12 hours. They had to stop his heart and put him on the heart/lung bypass machine two different times during the surgery. This is very risky and can cause many problems. We waited in that hospital for 12 hours as our baby's heart was being touched by the surgeons, and most importantly, God. I just remember staring at the walls, unable to think or even comprehend what was actually going on. It was too unbearable to think about.
When Andrew was finally wheeled past us just after his surgery, we couldn't believe how beautiful he looked. He had bright pink cheeks! I couldn't get over that the bottoms of his feet were no longer blue, and they were warm for the first time in his life.
It was at this point that I was sure that our heart journey was over. Andrew's heart was repaired and we could go on living our "normal" lives. Little did I know that there was so much more yet to experience. So many more friends to meet along this journey.
It was at Andrew's post op appointment two months later that we discovered that our journey as a heart family was far from over, and we would be on this road forever. Forever changed. That day we learned that the pressure in Andrew's heart was dangerously high. The surgery had increased the blood flow in his heart, which was supposed to help his branch pulmonary arteries (PA) grow, but instead of growing was creating pressure and causing his heart to work too hard. Again, we were devastated. What did this mean? Ultimately, more surgery and countless other procedures. The journey had only just begun.
Andrew underwent a cardiac catheterization that November to attempt to balloon his PA's. The attempt failed and doctors were forced to place a stent in his left PA to open it and relieve pressure. The stent bought him another surgery in his future. It would not grow with him, therefore would need to be replaced only by a third open heart surgery. In March of 2008 Andrew underwent a second cardiac cath to stent the right PA. They were hopeful this would help lower his pressure, as it was still too high. We later learned that the left stent was of no help to him, as its placement was creating problems. It was in a difficult location, and doctors attempted again in May of 2008 to place another stent and only succeeded by placing a second stent in the right PA. So Andrew has three stents currently, and for a while they worked in his favor so we could hold off surgery.
At his cardiology appointment in December of 2008 we learned that it was time for surgery again. The pressure was increasing, and we knew the troublesome left PA stent was failing.
In February of 2009, God performed another miracle for Andrew and our family. Doctors performed another cath to get measures for surgery, but while in the cath lab decided to try to get to the left stent one last time. By a miracle from above, they were finally able to get into the left PA and widen the current stent, relieving the dangerously high pressure Andrew had been living with for so long. There was a celebration in the cath lab, and the waiting room and there were no words to describe the feeling we had. This just bought Andrew at least another year or two with no surgery. This was BIG. This proved to us again that MIRACLES DO HAPPEN. And they only come straight from above.
Andrew is our hero. He has already endured so much in his short time on Earth than many do in a lifetime. I didn't even mention the physical and speech delays, or his mild hearing loss, because they all seem minor compared to everything else he's been through. He went through a year of intense physical and occupational therapy and finally walked at 21 months. He wears hearing aids to help with his speech and communication and attends speech therapy. And he is the most joyful and happy little boy you will ever meet. He continues to amaze us every single day with his determination and spirit.
Andrew is currently doing well and being followed by his cardiologist. When they feel it is time, they will take him back to the cath lab again to try to widen the stents one more time, hopefully increasing the surgery wait time even more. So, while a third surgery still looms over our heads, we choose to live each day with our precious son to the fullest. Count every blessing, live in the moment and not take one second of his life for granted.
Below is his first birthday letter that I wrote to him. Celebrating his first year of life evoked many emotions, as we were never sure Andrew would live that long. We are eternally grateful to all of the doctors and nurses who saved his life, and to our Great Physician, for giving us the honor of being his parents, and allowing Andrew to continue to live with us on this Earth. We know he is "on loan" from God.
HAPPY BIRTHDAY, BABY!
It was exactly one year ago that our lives changed forever. The moment you were brought into this world, you made me a mommy and you instantly stole my heart. You made me the proudest mommy there could ever be. Exactly one year ago we were scared. You weren't "supposed" to be born so early- but it was God's plan. God has an amazing plan for your life, Andrew. When daddy and I heard your cry for the very first time it was the most joyful sound in the world. I could never describe the feeling I had when I first saw you. It was beyond words. I remember how beautiful you were, and how tiny. I remember thinking how could I be so in love with someone who I never met. All I wanted to do was wrap my arms around you and protect you from the rough life I knew you would have to endure. You instantly became my hero and right then and there I made a promise to be the best mommy I know how. I will always be here for you, Andrew. I will always be your biggest fan. I will try to take the pain away by giving you the best life any kid could ask for. I will give you all the love in my heart. So many times I have looked at you and wished I could trade places with you so you wouldn't have to be put through one second of pain. Oh, how many times my heart has broken as I have watched you lying in your hospital bed with a scar running down your chest, looking up at me with those big brown eyes of yours. Oh, how I have wished it could be me instead. But I also know that we cannot feel sorry for you, because you are so strong. You are a fighter, it is just who you are. God created you to be the strong, amazing little person that you are. You will be raised to grow up being proud of yourself and all you've been through. We try not to question God as to why this happened to you, to our little family. Sometimes it doesn't seem "fair." But what we do know, is that God knew you needed just the right mommy and daddy to love you and take extra special care of you. For the rest of our lives we will be honored He chose us, and we will never let Him down. We will never question why someone so perfect was brought into our lives to love. We are grateful for the miracle that you are. We are beyond proud of you, Andrew. We are so proud that you have touched so many people's lives and you can't even speak yet. You have touched people who don't even know you. How many mommies can say that? Sometimes when I watch you as you sleep, I just take a moment to notice how miraculous you are-from your "wild man" hair to your chubby little toes. You have blessed our lives and brought us more joy than you will ever know. Every time you smile or laugh I can almost hear the Heaven's singing. Each and every moment I get to spend with you is a gift. I treasure every little thing you do that I get to witness… like when you are in the bathtub and get me soaking wet- I am thankful you are happy so I just laugh and let you soak me more! When you pull your socks off the second I put them on, I don't get mad at you- who needs socks anyway? When you make a mess when you are eating and get food in your hair and all over your face, I just laugh with you and let you have fun. When you army crawl over to something you aren't supposed to play with, I take a moment and thank God you can crawl all by yourself. When you wake up in the middle of the night, no matter how tired I am I get excited because I get to go into your room and rock you in my arms…
You have taught me not to worry about the little things that don't really matter. Never again will we take one thing for granted because everything you are doing and learning every day is a miracle. You have taught me to be a better person, Andrew. Thank you for teaching us so much about how to enjoy life to the fullest. After everything you've been through in your short year of life, you always bounce back and keep smiling. It is such an honor to be your mommy. You have filled my days with happiness and I love you more than words can express. I love you my little monkey!
Love your MAMA!
Thank you for your time and consideration to join us in the fight to help spread awareness for congenital heart disease. To honor those babies whose lives have been lost, to help save the lives of the many babies who will be born with a CHD in the future, and improve the lives of children who are survivors yet still fighting.
Thank You,
Jennifer Huegel
Andrew's mommy