Abigail and Aaron’s Story

In December of 2011, we were eagerly awaiting the ultrasound that would reveal the sexes of our long awaited twins. So far, everything had been progressing normally and we were just starting to feel the babies move. We were delighted. The look on the technicians face was not good—I knew something was not right. We were devastated to find out that one of our twins had died.

That was December 12th. We regrouped. We had to. There was no time to grieve—we had to focus on our surviving baby girl. We had a baby shower. We lovingly and painstakingly prepared a nursery. We chose a name. Abigail—“my father’s joy.”  Our long awaited miracle.

And then my water broke—a little over seven weeks early. An ultrasound at Williamsport Hospital suggested her heart looked small. We were transferred to Hershey Medical Center and our worst fears were confirmed. Abigail was diagnosed with hypoplastic right heart, along with a spectrum of other heart disorders. The surgeon said he could reconstruct her heart through a series of three surgeries. He wanted us to try to grow her to five pounds.

And so the waiting and worrying began. I was on bedrest. I cried all the time. I worried all the time. I tried to eat. I obsessed over when they would bring my antibiotics. There was some dissent among the ranks—deliver  to prevent an infection that would threaten both our lives or try to delay labor and let her grow bigger—every ounce conferred some survival advantage. Every moment was tinged with fear and anxiety.

Thankfully, we were able to keep her inside and safe until nearly 36 weeks. I spontaneously went into labor on my own and after MANY hours of labor, pushed forth our beautiful girl into the world. Hearing her cry was one of the most beautiful moments of my life. She weighed FIVE POUNDS AND ONE OUNCE!

The whirlwind began. A whole team of NICU nurses and doctors were in the room with us. They let us hold her for about a minute before she was whisked upstairs. Eight hours later we finally got to look at our girl. She looked amazing- perfect. Tiny and perfect. You could not have guessed that she had only half a heart.  We were elated! She was doing so well. It gave us false hope. Later that morning they stopped by to tell us that they had found another devastating abnormality–Total Anamolous Pulmonary Venous Return. One heart defect would be extremely serious; two was absolutely devastating.   Our hearts wept.

We spent three beautiful days with our angel in the NICU. She was a spunky one. She was feisty. Everyone said so. SHe held onto our hands like she knew her time with us was short. She inspired us with her strength and bravery. If you wonder how an infant can be brave, just ask us. We’ll tell you. We asked the surgeon not to quote numbers to us. We knew the odds were against us. We also knew that literally hundreds of people all over the world were praying for our spunky little runt. We hoped. We prayed. We hung on to each other. I was four days postpartum, sleep deprived, trying to pump breastmilk, swollen and bleeding but I was in the NICU every single second I could manage. Rob had to drag me out of there to sleep for a few hours at a time.

At four days of age, she went into the OR for a 12 hour surgery. We knew that she may not survive the surgery.  As each hour passed that the surgeon did not call, we said, “She’s still alive.There’s hope.” We wept with joy and relief when they said she was off the heart lung bypass. The days that followed in the PICU were terrible beyond words. She suffered. We suffered. FInally, angels came and ushered her home. I know, I sensed their presence.  Our baby girl inspired in us so much love and compassion, which we hope to harness to help others who face a simlar loss. It hasn’t even been a year since we lost Abigail so our story is still unfolding.

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