I guess the best place to start is from the beginning. And here is the abbreviated version.
On April 26, after nearly 7 months of trying, my husband Jonathan and I found out we were pregnant with our second child. We were ecstatic! We knew we wanted to wait until our son AJ was old enough to handle everything, and at that point he was 4 and a half, so the timing was perfect. We broke the news to everyone on Mother's Day, and naturally they were thrilled. Still, from the very beginning, I had this nagging feeling that something was wrong.
In the beginning of May I started spotting. Like nearly every pregnant woman in the world, even though we're told "it's normal," I began to panic. I went in for an ultrasound where we saw the yolk sac. We were told to come back in 10 days for a follow-up ultrasound to check viability. Basically, if there was growth we could consider it a normal pregnancy. If there was none, I was having a miscarriage. Those 10 days passed by more slowly than you can imagine. But when we went back, right away we saw our little gummy bear on the screen. All was well, and we could rest easy. Theoretically, of course. A pregnant woman never rests easy when she knows the risks that are involved.
Eventually, as I moved into my second trimester I began to relax. At the end of June, I went up to my friend Jaime's baby shower in Maryland. As much as traveling from NC to MD 14 weeks pregnant sucks, I was still excited. This was Jaime's first baby, and one that we had all been praying for since Matt and Jaime got engaged. The shower was fun, and Jaime looked adorable with her big round belly at 35 weeks. I rubbed my own emerging bump and thought about how I couldn't wait to be that far along.
Even at 14 weeks, Jonathan and I had chosen names for the baby. If it was a girl (as Jonathan suspected), we would name her Kylie Marie. If it was a boy (as I was so sure), we would name him Brady Alexander. Our ultrasound was scheduled for August 7, and it felt as though the day would never come. We just wanted to know--boy or girl, pink or blue, Brady or Kylie.
While I was at my appointment on July 18, I was 16w6d, I received a text message from Jaime--her water had broken and she was on her way to the hospital! I was so excited, I hardly heard a word the Nurse Practitioner said for the rest of the appointment. Jonathan and I went out to dinner that night to celebrate, and found out that Jaime had delivered her baby boy, Brandon, that evening. I kept saying, "I can't wait until it's my turn."
Finally, after having been sceduled for 10 weeks, it was the day of my ultrasound--August 7. The whole day I could think of nothing else. I just wanted to skip everything and go right to the doctor's office. Of course, that wasn't really an option with work. Jonathan picked me up from work that afternoon, he already had AJ with him. AJ was so excited to see his baby on tv, as he said. He just couldn't wait to be a big brother. We were a little early, so we waited in the waiting room. And we waited. And we waited. Finally, almost 20 minutes after our scheduled appointment time, the ultrasound tech called us back.
I laid back on the table, had my baby bump squirted with warm gel, and the tech got to work. Immediately I saw hands and feet, and a head. Then we got the money shot. "Do you know what that is?" the tech asked. Having seen it before, I was positive. It's a boy! Then she began taking measurements of his organs--Brady's organs. It felt so great to finally be able to call him by name. When she got to the heart, the tech became very quiet. There were no more jokes, no more laughs. After a few minutes of the most stressful silence one can fathom, she turned to us with tears in her eyes. "The baby has a heart defect."
Immediately I began to sob. I knew in my heart that something was terribly wrong, and here it was, the beginning of my confirmation. She went to call the doctor to review some of the pictures while I called my mom to break the news. Instantly my mom dropped everything and said she was on her way. Even at 25 years old, I felt comforted by the thought of having my mother close by. The doctor came in and said she couldn't tell us much since she's not a specialist, but that she made us an appointment for the next morning with Maternal & Fetal Medicine. I would have another ultrasound and the specialists would look over and hopefully tell us what was wrong.
That night, we took AJ to my mom's house as planned. They were scheduled to leave for Disney World the following morning. As much as Mom and Tim, my stepdad, offered to stay behind, the more we insisted they should go. There was nothing that they could do by canceling their trip. And we didn't want AJ to have his plans ruined either. They should all go and do their best to enjoy themselves. We promised to stay in touch.
Friday morning we awoke and headed straight for Maternal & Fetal Medicine. There was a tech and a doctor present during the hour and a half long ultrasound. They debated back and forth with several medical terms that neither Jonathan nor myself could understand. All we knew was that it was bad. Very bad. The eventually brought in a pediatric cardiologist to confirm their diagnosis. Hypoplastic Left Heart Syndrome, or HLHS. This was all new to us, our heads were swimming. Apparently, Brady's heart had not developed properly, particularly on the left side. His aorta, mitral valve, and left ventricle were all underdeveloped. The cardiologist asked us to meet him in his office later that afternoon and we would discuss it more in depth. With that, we left to pass an agonizing 4 hours.
In that time, we called friends and family. Several of them researched the condition on the internet and gave us some hope, some promising news. HLHS patients now have a three-stage surgery open to them that helps restructure the heart so that it pumps as normally as possible. We were cheered up a bit. We kept saying that so what if he needed some surgery, there are worse things in life. And who cares if he'd never play sports, he'd at least be able to live a somewhat normal life.
However, our meeting with the cardiologist changed all that, shattering what hope we had left. While the surgery is an option for ideal candidates, Brady was far from ideal. He had almost no left side of his heart at all. At birth, his aorta would be no bigger around than a strand of spaghetti, and his left ventricle would be almost nonexistent. It was the worst case the cardiologist had ever seen. We asked for his honest opinion. "He's going to suffer," he said. "He will need a heart transplant fairly quickly, and infant hearts are hard to come by. He will probably suffocate to death waiting for one."
We walked out of the office stunned, confused, and broken hearted. How could it be? How could our baby be so desperately sick? And, as any mother would do, I asked myself what had I done wrong? It had to be my fault. He was living in me, he needed me to make him better, and I couldn't. What could I have possibly done to cause this to happen to my baby boy?
Jonathan and I spent the weekend wrestling with the decision. Do we proceed with the pregnancy, knowing he will suffocate to death? Or do we terminate? I couldn't kill my own baby! What kind of a mother would do such a thing? he was fine where he was, I could feel him moving and kicking. How could I possibly end that for him? But then Jonathan made me think about what he would go through. The pain, the suffering. How could I do that to him either? Monday morning I finally decided that we would end the pregnancy. I would rather him go peacefully in my stomach than to fight to live to no avail after he was born. I couldn't let him hurt.
Monday afternoon we had an appointment with Dr. Tidwell. He explained the procedure to me so that I would feel as comfortable as possible. I almost laughed--there would be no comfort in what I was doing. He said that he would insert the laminara into my cervix that afternoon, which should help it to dilate naturally overnight. The following morning I would be admitted to the hosital in outpatient surgery. He would remove the laminara, then perform something similar to an amniocentesis. The difference would be that he'd be removing much more amniotic fluid and replacing it with saline, which would cause an electrolyte imbalance and stop Brady's heart almost instantly. I would then be hooked up to pitocin and moved to a private room where I would go through labor and deliver his body. It all sounds so technical, so black and white. I wish it had felt that way.
Things went as planned at first. I was moved to my own room to begin labor. Almost immediately the cramps and the contractions started, so they hooked me up to a morphine drip. It didn't do much to ease the pain, but it made them feel as though they were doing something great for me. Hours and hours went by. I was told that the average length of the delivery at this stage was 18 hours. That time limit came and went with no success. I had not dilated at all. 24 hours--still no change. 36 hours--no change. At 46 hours my water finally broke, and it was the most amazing sense of relief i've ever felt. I was beginning to feel like I would literally split in half. But finally, at 6:00 Thursday morning, my water broke. And then at 8:00 we delivered him.
The nurse took him away to get him cleaned up, and then brought him back so Jonathan and I could spend a couple hours with him. They were the hardest two hours, but also the sweetest. We held him, talked to him, told him how much we loved him and would miss him. The absolute most difficult moment was handing him back to the nurse because I knew at that point that we would never see him again. It almost killed me to do it. We were able to get 2 pictures of him though.
That's all I feel up to typing now. I feel exhausted just reliving it all.
