Our Letters of Hope

January 2, 2008 turned out to be a day that would change our lives forever. We were at our routine 20-week ultrasound, watching our baby on the monitor. The ultrasound technician went silent and excused herself from the room. My husband and I exchanged worried glances but remained calm for the sake of our three year old, Emily. Soon the technician returned followed by the obstetrician. We sat in disbelief as the obstetrician explained that our baby's heart was extremely enlarged and that we would need to see a pediatric cardiologist for further testing.

We left the obstetrician's office feeling numb. How could this be happening, how severe was the defect, were we going to lose our baby?

The next four months were a roller coaster of emotion. We met with dozens of doctors, specialists and surgeons who gave our unborn baby a diagnosis of Ebstein's Anomaly and Pulmonary atresia.

Ebstein's Anomaly is a rare defect involving the right side of the heart, specifically the tricuspid valve. Ebstein's can range from mild to severe, this was a severe case.

Pulmonary atresia (PA) is a complicated congenital (present at birth) defect that occurs when the pulmonary valve is not formed properly.

In our baby's case, the combination of malformations allowed no blood flow through the pulmonary valve and on to the lungs. Without surgical intervention, she would not survive, and even with surgery, her chances were slim. It would be necessary to deliver two hours from home at the University of Iowa Hospital. Our baby would need a team of specialists to be ready and waiting.

I can not explain what it is like to feel your baby rolling around inside your belly while knowing that those movements, may be the only experiences of life you will have with her.

Although our baby was several months away from being born, our lives had already begun to change. We had not planned to find out the gender of our baby. But we decided that with such an uncertain future, we wanted to be able to give him/her a name in utero. We found out our baby was a girl, Grace Kay Diggins.

We were completely overwhelmed, and Grace hadn't even been born yet. I cried everyday. I cried in fear of Grace's life. I cried for Emily, she was so excited to have a baby sister. I cried because of the unknown.

We were completely consumed with preparing for her birth, though not in the typical way. We weren't painting the nursery, we weren't buying clothes and diapers, we weren't putting together baby furniture. Our preparation consisted of research, doctor visits and calls to the insurance company.

We noticed changes in other people as well. Some of our closest friends disappeared. I'm sure they didn't know what to say, so they chose not to say anything at all. It was a very lonely time. No one around us truly understood what we were going through.

It felt like we were drowning. We knew that on top of facing the mortality of our baby, we would also be facing financial struggles. Grace would require special care at home and exposure to germs at daycare could have deadly consequences, so we made the decision that I would not return to work. While I only worked part time, my income was an essential part of our finances. And yet, thinking about money only made us feel guilty, how could we be worrying about such superficial things.

Before we knew it, May 5, 2008 had arrived. At 7:34 pm, Grace Kay Diggins was born. She weighed 5 pounds, 6 ounces and was 20 inches. Despite expectations, Grace was breathing and even cried. She was given a quick check and handed to me.

I had spent the last four months crying, but then, when I was sitting there looking at her, I didn't shed a tear. I don't know if I was in shock, maybe I was too scared to cry or maybe deep down I knew she was going to be okay.

We had just a minute with Grace before she was rushed off to the NICU. Later that night we were able to visit for the fist time. She was perfect, I couldn't understand how she could be so sick, but look so great. I just wanted to grab her and run. Maybe if I ran fast enough we could leave all of the fear and pain behind us. Grace had to be intubated that night, her first cry would turn out to be the only cry we would hear for three weeks.

The next day Emily was able to visit Grace. We had prepared her the best we could for what she was going to see. Emily was very excited to see us and to meet her sister. When we walked into Grace's room, the color drained from Emily's face and she wanted to leave. Emily has always been a very sensitive and empathetic little girl, but we never expected her to hurt so much for a baby she had never met.

Our parents were also able to visit. Everyone put on a brave face, but we knew they were terrified at seeing her that way and being unable to touch her. We were no longer allowed to touch her because it was too much stimulation. It was hard enough to not be able to hold her but not being able to even touch her. Every motherly instinct in me was screaming. The most natural thing for a mother to do when their child hurts is to hold them, hug them, kiss them and make it better. Instead, I had to stand by and watch her silent cries and do nothing to soothe her.

I think it is hard for someone who hasn't been there, to understand the enormous impact that a CHD can have on a family. There is more than worrying about your baby's health and your family's finances. When you deliver a baby that requires treatment in the ICU, you as the mom, don't get time to recover. Normally I would go home, spend several weeks relaxing and holding my baby. Instead I was thrown back out there two days after giving birth. I was exhausted and the hospital is huge. Just going to the bathroom or to grab lunch is a very long walk. My feet and legs were so swollen for the first week and a half that I couldn't even get my tennis shoes on.

There is also the impact on your marriage and your relationships with family and friends. Everyone grieves and handles stress in different ways. I, more than once, misinterpreted the actions of some of our biggest supporters, feeling and thinking that they didn't care. When the truth was, that they were completely overcome with grief but trying to hide it and be strong for us.

As Grace's parents, Kenny and I were crammed into a small room together 24 hours a day. Add the stress, fatigue and our individual ways of handling it and you have a recipe for some head-butting. Fortunately for us, we have incredible family and friends. Their support has been essential to our families "survival", both emotionally and financially.

On day three we met with Grace's surgeon, Dr. Davis. They had confirmed the prenatal diagnosis of Ebstein's anomaly and pulmonary atresia. He went on to explain the surgeries she would need. It was to be a three-step process. The first surgery was scheduled to be in just two days (surgery would later be postponed to day ten while they tried an experimental treatment).

The details of Grace's journey are very vivid in our memory. But there are moments that seemed to have a much bigger impact than others. This meeting with Dr. Davis turned out to be one of those moments.

Before leaving the room Dr. Davis paused and then, referring to the upcoming surgery said "I would recommend you spend as much time as possible with her between now and then."

Up until then I had done a good job of holding myself together, but I heard his words and took the statement for face value. I immediately burst into tears. I had known for months that this day would come, but still, I could not comprehend how we may have just days left with our sweet girl.

In preparation of surgery, Grace was moved to the PICU (Pediatric Intensive Care Unit) and we had a bedside baptism for her.

Every morning I would ask to hold Grace and every morning I was told no, it would be too much stimulation for her. As the days passed Grace began to swell from fluid, a symptom of heart failure. I had this ache in my gut, I needed to hold my baby.

Finally on day nine I asked to hold her, and without hesitation, was told yes. We weren't able to hold her the way you would expect to hold a baby. She had a pillow that she laid on in her bassinet, she had to stay on that pillow, but we were able to hold the pillow on our lap. Nonetheless, it was incredible. She seemed to just melt and relax for the very first time. Later that day while getting lunch I broke down. I had been met with such resistance when asking to hold her, and now, she was showing obvious signs of heart failure and they just handed her over. I thought it was a sign. It felt like they knew we didn't have much longer and that's why they so willingly let me hold her. As strange as it sounds, I think that was one of the first times that it really felt real. I finally acknowledged the fact that we may not be taking our baby home.

The morning of surgery our parents arrived at the hospital to see Grace and to be with us throughout the day. As hard as it was going to be, I had made the decision to be positive, I wasn't going to let her see me cry. I wanted to be strong, I wanted her to feel that and carry it with her into surgery. To this day I don't know how I got through that morning without falling apart. I reassured my baby girl that she was going to do great.

Then the time came. The wheels on her bed were unlocked and we were on our way down the hall to the elevator. Kenny and I were allowed to accompany her to the big double doors that lead to the surgery suite. When we reached the doors the procession stopped and we were able to say goodbye. We kissed Grace, told her how much we loved her and told her to be strong. I continued to hold it together until those doors slammed shut behind her. I fell into Kenny's arms and we both broke down.

I can not begin to explain what it feels like to hand your precious baby over to a virtual stranger for surgery, and pray to God that she comes back alive.

Throughout the day we received updates and all of those updates were positive. Grace returned to her room late afternoon. There was a fury of people setting up machines, watching numbers, starting medications.

When we saw Grace for the first time, had I not known differently, I would have thought she was dead. She was a shade of gray that I didn't know a human could be, and still be alive. She was heavily sedated and on a paralytic to reduce stress and stimulus. Her chest was left open to allow room for her heart to swell. She had cardiac leads, pacemaker wires, drainage tubes, brain and kidney oxygen sensors. She also had several IV's, including one in her neck and one in her head. It was incredible how much equipment could be attached to such a tiny body.

Grace's extremely rare and unique anatomy required a combination of six procedures. It was an extraordinary amount of trauma for the heart to endure all at once. Only time would tell whether or not her heart was able to handle it.

As the days passed, she excelled. She was weaned off of medications, her drainage tubes came out, the pacer wires came out and a feeding tube was put in. And for the first time since she was born, we were able to hold her...without a pillow in between us! Being able to hold our baby and being able to hear her cry, things that most people take for granted. When Grace was extubated and we heard her cry, it was a soft, raspy and hoarse cry, it was absolutely incredible. We will never underestimate the miracle of that sound.

We had Emily visit us as often as possible. We were torn, it felt like we were choosing one child over the other. We didn't want Emily to feel abandoned or develop resentment towards Grace. Luckily she never did, Emily was always excited to see Grace. At the end of her visits it broke our hearts to have to let her go. She would cry hysterically, wrap her arms around us and hang on for dear life. One time she climbed into Grandma's car and started to clear a spot next to her carseat for me to sit. She said "you can come with me." It hurt so much to tell her I couldn't go with her. I tried my best to stay positive and not cry in front of her. I knew that would only make it harder. Parents should never have to choose between their children.

On June 2, 2008, when Grace was 28 days old, we took her home. It was wonderful to be home after a month away and even more wonderful was having our entire family together.

Grace did incredible at home. She had some issues with methadone withdrawal and a milk protein allergy, but with all the potential complications, she encountered very few. She ate well, she slept well, she grew and her heart appeared very strong.

In October 2008 we returned to the hospital for a cardiac catheterization in preparation of her second open-heart surgery. Things didn't go as planned. It was decided that Grace would stay in the hospital and her second open-heart surgery would happen within the week.

This time we were allowed to go with Grace all the way into the operating room and hold her until she was asleep. I had held her in the past while she was sedated for echocardiograms, but this was much different. I was completely unprepared for how her little body would react to the sedation. Her limbs twitched and her eyes rolled back in her head. As much as I needed to be there and hold her as long as possible, it was so hard to see her body move that way.

As she did before, Grace soared through surgery and recovery. We couldn't believe it when six days after surgery Grace was discharged and we were on our way home.

We are so amazed at Grace's progress. She has met every challenge head on and exceeded all expectations for a heart baby. She is an incredibly happy baby. She loves her big sister and is an absolute joy.

There is so much that is unknown about congenital heart defects. CHD's are the number one cause of birth-defect related deaths, the cause of most of those defects is unknown. Many babies born with a CHD won't live to see their first birthday. CHD research is grossly underfunded when compared to the number of families affected.

It has been and will continue to be an emotional road with so many uncertainties. We know that things can change in an instant. We have learned so much since our journey began in January 2008, and not just medical terminology. We would not trade anything for our baby Grace. We have been blessed with two amazing little girls and we thank God everyday for them.

Mandy Diggins (Grace's Mom)