Maren's Story: Parent's Letter Project Hypoplastic left heart syndrome - Maren's parents

In February of 2007, a new job took our growing family (our 3-year-old son, Henry, and our daughter, Maren, on the way) from the Washington, DC, area to Silver City, New Mexico. My husband, Randy, and I were very excited to begin the next chapter in our lives.

In March an ultrasound was performed, and although neither the sonographer nor the midwife was able to elaborate, we were told that something was very wrong with our baby's heart. A week later, Randy and I found ourselves sitting across the table from the interim chief of pediatric cardiology at a hospital in Albuquerque. It was the first time we had ever heard of hypoplastic left heart syndrome.

Here is what I wrote in my journal soon after that experience: As Randy and I sat in front of the doctor giving us the diagnosis and treatment options, things didn't seem real to me. I heard what the doctor was saying, but it didn't sink in. Reality hit me a couple of hours from Albuquerque while driving home. Randy fell asleep and I guess I let my mind go while alone. I think I cried the rest of the way home. I was so concerned and had so many unanswered questions. I don't think I have felt more confused in my life. Was my baby going to live or die? What hospital should we go to - they are all so far away from here? Why was our family asked to deal with this challenge right now or even at all? All I knew is that I didn't want to face it. I kept saying over and over in my mind, 'I can't do this. I don't want to do this.' We went home that night and instead of praying like I knew I should have, I went to bed. The next day, I prayed that Maren would be healed - that her heart would function normally if it were His will, but if not, that my family would have the strength to see this through, whatever the outcome.

After accepting the challenge, so to speak, our next decision to make was where to have Maren treated. Families in Albuquerque are typically referred to a hospital in California for cardiac surgery. But, because Randy and I felt like we needed the support of our family to help us through Maren's surgeries, we began to research hospitals close to family. We started with DC. Through a group on Yahoo, I found a mom whose son had all three surgeries performed at Children's National. Through this mom, I was able to contact one of the social workers, as well as Maren's current cardiologist. Randy and I were extremely impressed with the professionalism, kindness, and compassion demonstrated by both while speaking with them, and after a little more research on our own, we decided that Children's was where we needed to take Maren.

Maren spent a total of six months in the hospital before her first birthday. That time, in addition to the time we had to prepare before Maren was born, provided Randy and me with positive experiences, teaching us a lot (probably more than we ever wanted to know!). I will share a few things that stand out in my mind.

First, I learned to be confident in the decisions that Randy and I made. Although different options were placed before us, Randy and I obviously chose to have Maren and we were confident that we made the right choice. Because of this, even when Maren was at her lowest and scariest point in the hospital, there was no room for "what ifs" and the guilt that follows. The same is true about our decision to have Maren treated at Children's. When problems arose after Maren's surgeries, of course thoughts crept into my mind as to whether or not Maren's recovery would have been different had we chosen a different hospital, but because Randy and I knew Children's was the best choice for Maren and us as a family - even before Maren was born – I never dwelled on those thoughts. As quickly as they came to my mind, they were gone. I never had to beat myself up, wondering if we had made the right choice. It was already settled in my mind that the best choice was made.

Second, I learned to ask questions until I understood. After Maren's first surgery, I spent the days in the hospital with Maren and came home to be with Henry at night. Leaving the hospital was always hard, but I found it to be easier the better I understood Maren's condition and the goals the doctors had for her through the night. I am not a science person, but the nurses did a fantastic job at diluting the medical jargon to a point where I could understand enough to know what to specifically ask about when I called during the night, or when I showed up first thing in the morning. Being present for "rounds" was always very helpful, too. At first I was completely oblivious while I stood on the outside of the circle of chatting doctors, but the longer Maren was in the hospital, the more I understood, allowing me to actually participate and advocate for my daughter.

Third, I learned to take things one step at a time. If I focused solely on Maren coming home, I was totally overwhelmed. Like with any big project I set out to accomplish, I had to break Maren's recovery up into smaller pieces. Yes, the big goal was to get her home, but there were many, many smaller steps that would lead up to accomplishing that goal. Focusing on those smaller steps, one at a time, made the ultimate goal much less daunting. It also allowed me to see the progress that she was making on a daily (and sometimes even an hourly or minute-to-minute) basis and be grateful for even the smallest accomplishments.

Lastly, I learned to be happy. A few weeks after Maren was born, I realized that we would be staying for a while. I also realized that I had very little, if any, control over the situation our family was in. It was very frustrating and even depressing. I let those emotions build up to a point where I broke. I remember leaving the hospital one day in tears, and cried pretty much through the evening. I couldn't turn it off. I didn't want to go to bed because I knew as soon as I woke up the nightmare would start all over again. Eventually I did go to bed and woke up the next morning not feeling much better. And then all of the sudden it hit me. I realized that one thing I did have control over was my attitude. I was faced with a decision. I could spend the next indefinite number of days in this pitiful funk, or I could pull myself together and choose to be happy. I chose to be happy - I made friends with the nurses and the families of other patients; I looked for at least one good thing that happened each day; I brought books, scrapbooking projects, and other crafts to give my mind a break from the emotional weight of having a child in the hospital; I committed to going home each evening and spending time with Henry - our strong and healthy boy. What a blessing Henry was! Life almost seemed normal when I was with him. Although the choice was hard (some days harder than others), I can't imagine it being anywhere near as hard as living those seemingly endless months in the hospital with a big gray cloud over my head.

I will close with one last experience recorded in my journal: "I always felt like we were lead to Children's for Maren's care. I always felt like the people who helped Maren – the surgeons, the doctors, the nurses, the social workers, etc. - were placed to work there at this specific time to help our family, specifically our daughter." I'll briefly share one experience to exemplify this. I was chatting with one of Maren's nurses in the Cardiac Intensive Care Unit (CICU) one day. Randy and I affectionately call her "Chest Compression Amy," and you'll learn why. I asked Amy how she ended up working as a CICU nurse. Amy reflected back for a while on her career track and admitted that she originally set out a different course for herself. But because of a series of events in her life, she came here to Children's. Amy said, 'I don't know. Everything happens for a reason, I guess.' As soon as those words came out of her mouth, I vividly pictured a memory that is forever burned in my mind. Maren had just come from having her chest closed in the operating room. Everything was seemingly well. But out of nowhere Maren coded. Her heart stopped. Randy and I stood in shock as we felt the mood in the room change. Amy stepped in within seconds and began chest compressions. I will be forever grateful for Amy's decision to work at Children's. I truly believe that she was one of many who were led there to answer the countless prayers that were offered on Maren's behalf. "Chest Compression Amy" is not an exception.

Maren is coming up on her second birthday. When I look back and think on those two years, I am humbled. Every second of every day of her life is nothing less than a miracle. It is impossible to name each individual at Children's who has blessed our lives, but we are indeed grateful for each and every one. Their devotion has given us the opportunity for Randy and me to know our daughter, and for Henry to know his sister.

Sincerely,

Maren's mom and dad

Treatment Team

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