I am a second grade teacher and my students were very excited about me having a baby in February. After we received William's diagnosis, I had a very simple discussion with them. I did not go into details, but I told them that my baby wasn't feeling well and that it made me sad. Children have such a clear sense of basic emotions and I found that several students went out of their way to encourage me throughout the days that followed our discussion.
I was walking around my classroom, monitoring my students as they worked on an assignment I had given them. One little boy looked up at me and told me that I had done a good job teaching them that day. I smiled and said That makes my heart feel happy. Thank you!
I felt a little 7 year old hand reach up and touch my arm. I looked down at one of the little girls in my class who was sitting directly in front of where I was standing. She softly patted my arm and said,
Remember...You still have two hearts.
Her words stopped me in my tracks. There was something so incredibly profound and supportive about her perspective.
I did have two hearts in my body...my heart and William's heart. It was such a simple and direct reminder that I still had my baby and his heart was still beating, no matter what the diagnosis predicted.
I've thought of my student's words from time to time throughout the past eleven weeks of waiting and uncertainty.
I have two hearts. I still have two hearts.
When we were told that William has hydrops, his chance for survival went from 8% to practically 0%. We went to CHOP to try to find out more information.
What they discovered through hours of ultrasound and a thorough echo-cardiogram, was that William's heart was working very hard. Too hard.
When babies are developing in the womb, they require blood that is rich in nutrients and oxygen. This blood travels through the umbilical vein and other parts of the baby's circulatory system. The umbilical vein travels through the liver before sending the blood into the heart. There is a little shunt called the Ductus Venosus that is critical in processing and moving the blood along to the heart.
William does not appear to have a Ductus Venosus. If he does have one, it is not open or functioning the way it should. This means that William's heart is working overtime. He is not getting properly processed blood in his heart which is causing his cardiac output to be much higher than is typical for a baby of his gestational age and size.
I'm sure there is a much more medically eloquent way of explaining this, but this is how we understand the situation based on what we've discussed with the specialists at CHOP.
The doctors feel that William's excessive fluid around his body (Cystic Hygroma) and within his body (Hydrops) is due to the fact that his heart is working too hard. They have explained that it is very likely his heart will come to the point where it can't continue working and it will stop.
Essentially, our baby is in congestive heart failure.
This breaks my heart. Even though the doctors have assured me that William is not suffering and is not experiencing discomfort or pain, my heart is breaking for him.
My poor baby, your little heart is working so hard. I desperately wish we could fix it.
Every week, we go to CHOP for monitoring. They always listen for his heartbeat with a fetal heart monitor or they look for his heartbeat through an ultrasound. The moments leading up to his heartbeat check are often torturous for me. I know that it's a real possibility that his heart will no longer be beating.
When I hear it, I almost always start to cry. I feel relief wash over me along with a sense of pride that he is still here with us, fighting to live.
When we went to CHOP this morning, I had such a feeling of dread. I hadn't felt him move all morning and wondered if today was the day. The doctors have already indicated that he's held on longer than they expected. Each day he continues to live is truly a miracle.
When she placed the monitor on my stomach, his little heartbeat came across clear and strong. My body was shaking with relief.
Oh, William, you are such a strong boy. We love you so much.
Despite his condition, William has continued to grow and develop. In fact, he's a little ahead in his measurements (which are done without counting the fluid). It doesn't change the prognosis they are giving him, but it makes me feel good. I like to think of him as my big strong boy whose legs kick and whose heart beats.
I often have a lot to think about on our car ride home from CHOP each week. It's hard to digest the information they have to give us while we are there. But getting the chance to hear his heartbeat always gives me such a sense of joy and a gratefulness to God. I don't take a single day that William's heart continues to beat for granted.
I have two hearts. I still have two hearts.
Thank you, God.