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Wednesday, November 13, 2013

The Heard Family’s Story

After a full term pregnancy, we felt that we were ready for another. We tried and unfortunately miscarried but then tried again. We conceived and found out we were having identical twin boys. This news took on its own life, we were so filled with excitement, nervousness and joy. I could not control the utter joy and started buying 2 of everything; car seats, double stroller, cribs, clothes. 

At 24 weeks, I was taken by ambulance to the hospital. Cody, the bigger of the twins, flat lined in utero, and code blue took us running off to the ER for an emergency C-section. Cody's heart had stopped. I remember thinking...what is going on. This is not how it is supposed to be. The boys had Twin-to-twin transfusion syndrome (TTTS). 

Our identical twins were born at 24 weeks; Cody weighing 1.6lbs, and Dalton weighing 1.2lbs. Most babies cry when they are delivered but our room was quiet.  The twins were whisked off to the NICU, both extremely sick. We became doubled over in worry and scared for our babies. We spent countless hours at bedside with them, praying, singing, and talking to them. After 3 long days, we got the call to say Good-bye to Dalton. I now call this "the longest walk of my life." This walk started in a wheelchair with my husband pushing me but then I finished the walk on my feet; almost like I had to fight for him, hoping for a miracle. Nothing prepared me for this moment. We held him for what felt like hours and then we kissed his fragile lips and said Good-bye. This was also the day of my husband's birthday with the next day being Fathers Day.

 By some miracle, within an hour of Dalton's death, Cody then peed almost 27 ccs. This was
 a sign of hope. I left the hospital soon after with no babies, no balloons, no joy. Cody was still very sick and we had to plan a funeral. We had to find a casket, make service arrangements, pick out an outfit for Dalton’s final resting place and all the while having sets of two of everything in the "twin room" at our home. It was agonizing and so incredibly painful. Our joy in that room had somehow turned into such sorrow.
After the funeral, we continued to visit Cody everyday in the NICU for 143 days he had many ups and downs, various scares of illness, and we finally brought him home with oxygen support. I remember asking if this was truly our life.....What happened to all that joy we felt just 5 months prior....We were so confused. From that point on, I began reaching out to find support. It was overwhelming, chaotic, scary and most of all painful. While we celebrated every single joy we had in our life, our oldest son, Luke and our surviving twin, Cody....we were just numb with pain. 

The March of Dimes helped us in various ways through out this journey. During our NICU
stay, the NICU Family Support Specialist, Sarah, from the March of Dimes would always be walking around. I can remember countless times of her walking by, asking how I was or if I needed anything. We were in such chaos I always turned her down, but she was there, offering help and support. We have always participated in March for Babies to honor our journey, but we decided to join NICU Parent Advisory Council (NPAC), which is a family support team. They welcomed us and all our input. We were so grateful for their openness to our voices about our experience in the NICU. The team listened and heard our concerns loudly enough to begin advocating. We helped develop programs; such as The Butterfly project, A Place to Remember at the March for Babies, and a Loss Resource List.  These changes took place because of the March of Dimes advocating for what the parents have to say. These changes have helped other families and continue to become a part of what March of Dimes provides for families that have lost a child.

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