Jaelyn's story: Diagnosis of Tricuspid Atresia

January 1st, 2012

  I find it fascinating and not at all amusing that when you've endured something so traumatic or experienced something that has shaken you to the very core, the anniversary of that experience has no mercy. I find myself angry, overwhelmed, irritable, and sad. Sometimes if it's been a while, years even, you forget about the anniversary. But somehow you know. Sometimes and most usually in my experience, it's my environment, my surroundings that bring me back. The leaves start to fall, the coldness in the air, that sun at dusk.. so intense. That's when I know.
  Now and unfortunately, I have a new season, a new anniversary. It's the biting cold out, it's that feeling when all the holidays have subsided and I'm in a new year, and all those feelings start to reemerge. This time for something different. All that I want to do is cry. I want the tears to just run like a river. I want that. I want it, because it's one of the only ways to help me feel better. I want to scream and release my ..."why this child??? Why does she have to endure this? She's so innocent.. so precious." I want to take her place.. every. day. I'm not blaming God. I wouldn't dare. I know He has reasons, reasons at this point, that are beyond my comprehension. But I still have my whys.

  Last year, we were just coming home from our Christmas/ New Years in Utah. We were preparing our house for our first baby; a girl, due at the end of the month. We were having exciting conversations about when I'll start having contractions, if she'll come early, if she'll come late, what she'll look like-- who she'll look like. We needed to get the the house sprayed, the nursery set up (I never had that nesting phase), etc, etc.. We had been told about a month prior, due to many issues in my pregnancy, that our daughter may be missing the right side of her heart, but that most likely, since the ultrasound was so late in the pregnancy, that extremities were probably just in the way, that everything was fine and we were given the impression that it was no big deal.
  January 12th, 2012, I had an appointment to see the pediatric cardiologist, Dr. Stock, in downtown Phoenix for a fetal echocardiogram (to evaluate my baby's heart). George didn't have vacation yet, since it was the first of the new year, and we were pretty sure everything would be okay anyway. He went to work and I went alone to the appointment. I remember filling out the paper work, calling my mom about family history questions, and then being escorted back to the ultrasound room by a nurse. There were three nurses (there to learn more about fetal echoes), the ultrasound technician, and myself. Five people all together in that small room. It was nice to have them though. People to talk to. They made me feel comfortable.
  Before the ultrasound tech started, she explained that across the hall was Dr. Stock. He would be watching the same fetal echo on a TV in a private room, making notes. I would meet with him after to discuss what was seen. Then it started, the fetal echo, and we were all chatting. I had been through countless ultrasounds at this point, but seeing my daughter never got old. And now, it was really cool to see an up close view of her heart. About 40 minutes later, Dr. Stock came through the door. He immediately asked her to stop the ultrasound and go back about 30 seconds. He wanted to review that part more closely. The room fell silent. He was serious. Instantly my eyes began to well up. He then turned to me, placed his hand on my shoulder and said, "Hi. I'm Dr. Stock. I apologize for coming in so quickly without introducing myself. I just needed to make sure I'm seeing things clearly. This happens all the time. Sometimes it's difficult to see things clearly on these things, so we have to take extra precaution. Don't worry." He gave me a big, comforting smile and continued on with the ultrasound tech. I felt better. After, he told me that he would finish the rest of the echo in the next room and that we were just about finished. Ten minutes later, we were done.
  The ultrasound tech guided me to a room across the hall where Dr. Stock would join me shortly. I waited maybe 5 minutes, when Dr. Stock and a woman came in. She was beautiful, a lot like my mother. She was introduced by Dr. Stock as his assistant and fetal nurse coordinator. She smiled and said, "hello."
  I sat there waiting for one of them to talk. It felt like forever. Finally, Dr. Stock opened up, "Is it just you here for the appointment?"
  "Yes. My husband needed to be at work today. It's just me."
  "Okay, we have a lot to discuss... I'm afraid that your daughter has a heart defect called Tricuspid Atresia." He went on to explain the condition in full detail... and I couldn't get past that part.. "your daughter has a heart defect.." I started sobbing. I couldn't control it. The tears kept streaming down my face and I was gasping for air. I felt like I couldn't breathe. Dr. Stock stopped talking at the moment of my tears. He explained that I could have all the time I needed to cry, that this was a lot to take in and there has a been a loss for a normal and healthy pregnancy and child. They could stay if I wanted them to stay, or I could have some time alone. I asked them to stay. Then he asked if we wanted to call my husband and do a conference call, so he could hear the news from them and go over everything. I said no. I wanted to tell him myself. I asked for clarification about the heart defect and if it was something that I did. Could I have taken some medication when I wasn't sure yet if I was pregnant? He told me that it was nothing that I did and that I had done everything right to take very good care of myself and the baby. 'These things just happen." He continued to explained that Tricuspid Atresia is a heart defect present at birth (congenital) in which one of the valves (In Jaelyn's case, her tricuspid valve) between two of the heart's chambers hadn't formed. Instead, there's solid tissue between the chambers. Her blood can't flow through the heart and into the lungs to pick up oxygen as it normally would. The result being that her lungs can't supply the rest of her body with the oxygen it needs. He continued to tell me more; that she also has two holes in her heart. Two holes (ASD, VSD) that are presented as openings in the atrial and ventricular walls to allow the blue blood to mix with the red blood on the other side. He said her skin color would be cyanotic (blue) at times, until and at that point, when she'll need a series of three Fontan heart surgeries. He was however, pretty sure that she'd be able to skip the first surgery until she would be about six months old when she'll need the second of the three. Because I was such a mess, he drew me a picture to help me comprehend the anatomy of a normal heart and then the anatomy of how her heart is. He's obviously done this before. Lynn the woman in the room, Dr. Stock's assistant, gave me her card. She told me to call anytime if I had questions, needed references and so on. Dr. stock interrupted and told me not to look it up online and not to look at other people's blogs. Every case is different.
  They asked if I was okay to drive home since I was about an hour away. I said yes, but deep down, I was weak. I was broken. How could I drive home? How do I move on? How do we move on? We... George. Oh no, I have to tell George.
I looked up, lost in thought, realizing Dr. Stock was talking to me.. "sorry?"
  "Would you like to call your husband before you leave, in case he has any questions?"
  "...Okay."
  "We'll be right outside if you need us."

  The phone rang and George picked up, "Hi sweetheart, how'd the appointment go? Everything's okay?"
  ".... She has a heart defect..... It's called Tricuspid Atresia", I sobbed.
  "Wait, what?!"
  "She has a heart defect, George. She missing a part of her heart."
  "........."
  "George?"
  "Yeah, I'm here."

  We talked and cried for a while, and then George offered to come home to be with me. It was a lot to handle. I told him no, and that I just wanted to go home and take a nap. Maybe sleep will make it go away.
  I got off the phone and tried my hardest to regain my composure. I walked out of the room and Dr. Stock and Lynn were there waiting. They asked if George had any questions and I said no. I had done my best to explain to him what our daughter had. They were both very impressed to hear back what I explained to George. They told me that after getting news so shocking, it's not too common that people remember the details that I did. Dr. Stock offered to cancel a meeting later that afternoon so he could meet with George after work, if he changed his mind and wanted to meet with him. I thanked them for being so kind and promised to meet with them soon. The conversation concluded and I was left with a new pregnancy, a new baby, a new life.

January 1st, 2012

  I walked my way down to my car in the parking garage, got inside, sat there and cried. I cried so hard I felt like I was going to throw up. I spent a good while trying to gather myself. I was in no condition to drive and yet, I had to get home. I couldn't stay here watching people come and go at a hospital. I realized I would be doing too much of that on my own in the future. I turned the radio on in search for an upbeat song, and praying that Kelly Clarkson's voice would stream through my speakers. Instead, I stumbled upon The Band Perry's, "If I Die Young." I remember the song so clearly. It was now a new song again, as I started listening to the lyrics, "If I die young, bury me in satin. lay me down on a bed of roses..." I kept listening, imagining if, and then praying that it wouldn't be me.  "...Lord make me a rainbow, I'll shine down on my mother, she'll know I'm safe with you when she stands under my colors. Oh, and life ain't always what you think it ought to be, no. Ain't even gray, but she buries her baby.."  Why is this song on??????!!!!!!! Just my luck, something sad and depressing. My life is changed. I will hear and see things differently from here on out. I changed the song, and laid back in my seat. After a few upbeat songs later, I got on the road.
  I made it to about Mesa (30 minutes out) and had to stop. I needed to stop. Who was I kidding? I can't drive. Noticing the exit for the Superstition Springs Mall, I took it. Besides, I needed to pick up my ring that was getting diamonds replaced anyway. I looked in the mirror to fix my makeup. I was a mess. My eyes were bloodshot and puffy, and my makeup was practically gone. I was in no shape to be going out in public. But I figured the air would be good for me and I would just stop in really fast, pick up my ring and get out.
  I walked in and showed the lady my papers. She knew me. I was in often for my ring. I was always losing the diamonds on the halo part. She came back, showed me my ring and asked if I was okay. I blabbed out, "No. My unborn baby is sick." She didn't need to know that. I just blabbed it. I was a volcano erupting unable to control it. Embarrassed, I told her thank you, and that my ring looked beautiful. I gave her my signature before she could say anything and bolted out the shop. I could only imagine her thoughts.
  I arrived home, feeling relief from being away, somewhere I didn't want to be. I heard my dog so giddy that I was back. I opened her crate and sat on the couch. Immediately Zoey jumped up, excitingly kissed my cheek, laid her head down on my lap and stayed. Who cares that all of that training disappeared? In that moment someone knew how I was feeling and knew just what to do to comfort me as best way she knew how.
  I laid backed wanting a nap, but couldn't find sleep. So, I called my mom. I thought I had a good handle on my emotions, but as soon as she said hello. I started sobbing. I explained to her what happened at the appointment. She cried. We talked and I asked her to tell the rest of my family, because I couldn't tell them myself. After, I had to get off the phone. I couldn't take it anymore. She called George's step mom, concerned for me, being out in Arizona without any family. I received countless phone calls and texts from family and friends in that short period of time. None of which I answered.
  At the time George and I had only one car and since I had my appointment, I had to pick him up from work. I trailed all the way back to Tempe to get him. He came out and we hugged and switched places so he could drive home. He didn't look well at all either. He told me he couldn't concentrate at work. That his heart dropped when I told him the news. He was depressed the whole day, but he wanted to be strong for me, and he was.
  We got home, crawled into bed and held each other close. We talked a lot about what's next, what to prepare for. We went against Dr. Stock's advice and looked Tricuspid Atresia up. We clearly should've listened to him. There were too many scary things to look at. Too many stories.
  After a while, I realized that I had a baby shower later that night that some women in my church put together for me. I just couldn't fathom going. I wanted to cancel or not show up, but that would be impossible. How do I go to this thing and talk about my baby without having a melt down? It was beyond me. Instead, I showed up late. Like, 20 minutes late. But not on purpose. I got lost. I had never been to the house that was throwing my shower, but I was greeted with loving arms, and smiling faces. So, I put on a smile myself. I looked around and thought, "nobody knows." Turns out, it was just what I needed. A (somewhat) kind of distraction. The night came to an end and George wrapped his arms around me as I cried. Tomorrow will be a new day.

   I'm not sure why I'm sharing this today. Maybe I'll end up deleting it, but I guess I just feel like I need to get our story out. Please bear with me as I go through this. It's a learning process on how to deal with all of my feelings. I'm so thankful for the ones who have followed us through our journey with Jaelyn. The letters, the prayers and the support. I love you guys!