"Life is a succession of lessons which must be lived to be understood"

- Helen Keller

Our story

A powerful NICU experience of ups and downs


 

After many years of struggling to have a baby, we surprisingly found ourselves pregnant with twins. Other than experiencing morning sickness for 19 weeks, the pregnancy was normal until we hit 24 weeks. At a routine ultrasound, it was discovered that I was 1 cm dilated and I was having undetected contractions. We’ve since learned how common this is and how difficult it can sometimes be to determine preterm labor symptoms. Just 9 days later, on June 25th, 2009, our beautiful twins were born at 25 weeks 2 days. Jack Andrew was just 1 lb 11 oz and Abigail Renee, 1 lb 8 oz. As I lay there in shock, the babies were whisked away to the NICU as quickly as they had appeared.

The experience of the NICU is something we will never forget. You must scrub up to the elbows and put on a clean gown for every visit. We would walk through the first room of “big” babies who were “feeders” and “growers” and would soon go home. Next we would enter the main room where there were a few babies on ventilators but almost all were in open cribs, with nurses or moms feeding them. We then continued to the very back where our tiny babies lay in their covered, temperature controlled, incubator beds with tubes and IVs in them. Our babies were the smallest babies at the time. The standard procedure was that as they grew and their health improved, they would move up in the room and the newer, smaller, babies would come in behind them.

The doctors and nurses in the NICU were amazing and so incredibly caring. They told us exactly what was going on with regard to medicines and procedures, what all the machines and alarms meant, how to read their stats, anything we asked. Although they understood the gravity of the situation, we did not. They explained to us that our babies were “critically ill, but stable”. If you ask us now, Jack and Abby’s situation should have been more clear to us since they were only 25 weeks old or 15 weeks early. But at the time they looked just perfect; they had all their parts, they were just very tiny parts. What we didn’t realize was that every day in the NICU, every hour, every minute, they were fighting for their lives. We saw posters on the walls and heard stories from some parents about how their babies had been in the NICU for months. But throughout the roller coaster of the NICU, their babies were making progress. To us, this was how our story would go as well.


As the days progressed, both Jack and Abby would take a step forward and then step backward as life goes in the NICU. Early on, Jack struggled but Abby was doing great. However, on July 8th we called the NICU at 5:30am, as we did every morning. By 6:15am we were at the hospital by Abby’s side as she had had a bad night. We spent many hours with Abby that day and at 3pm they called us in to her bedside and told us they didn’t think she was going to make it. We needed to make some decisions on whether to resuscitate and if so, how far we’d like them to go. I remember being in complete shock that this was happening. This wasn’t supposed to go this way. She was supposed to continue to grow and be moved down the line of cribs until she was sent home with us.

Unlike with a full-term baby, in order to hold one of our babies, the nurses had to maneuver all of the tubes and lines and machines in order to bring our baby to us. It was a whole ordeal that can be very stressful on the baby and the parent. It has been proven to be very beneficial to hold a preemie skin-to-skin and is referred to as kangaroo care. It took two nurses to prepare her to be taken out of the incubator, a gift I would forever remember. I could feel her breathing as she lay on my bare chest. I could feel her tiny little arms and legs brushing lightly against my skin, her fingers touching my neck. The nurses all said that her vitals were the best they had been all day in those 2 hours that I held her.

We stayed with her in the NICU and at 6:30pm the time had come to make a decision. We agreed that we didn’t want her to suffer and it was time. The nurses rushed around to remove any tubes they could to let me hold her in her final minutes of life. We sat with our beautiful daughter, staring at her perfect tiny fingers and precious little nose. She was the sweetest, most beautiful baby we had ever seen. At 7:05 pm Abby took her final breath with both of us holding her tight. We knew at that moment she was no longer suffering and we had made the right decision. One of the doctors told us something right then that we will never forget. She told us that by making the decision we did to end Abby’s suffering now; we were being the best parents we could be. We were forced to grow up in just a few hours and make a decision we never thought we would have to face in our lifetime.


From day one, Jack struggled with an infection. However, on July 18th his health was worsening and the only possible reason would be intestinal issues. So at 11am on July 19th, they operated on our little boy. It turned out he had a perforated bowel. The doctors removed a very small portion of his intestine and the rest of it looked healthy. The anesthesia is the riskiest part and with that the following 18 hours were critical. He handled the surgery very well and the doctors were very happy.

Unfortunately, Jack’s little body and weak immune system could not recover and on July 20th, lying in his daddy’s arms, Jack took his final breath. This was just 12 short days after losing Abby. He had been such a fighter for his 25 days with us. We sat there realizing the gravity of the situation. We had just lost both of our children. We no longer had our babies with us, however we would forever be parents.

Since this experience, we’ve learned of just how many parents have experienced the pain of loss like we have or have children that are able to graduate from the NICU but have serious problems that can last for years or a lifetime. We never knew so many people had gone through such pain in their lives. In thinking about how these events have changed our lives forever, we decided to focus our thoughts on how this experience can help others. No matter how many times we question ourselves or think “what if”, we cannot change what happened to us. But it is our hope that we can help other families out there. We started the Jack & Abby Neonatal Foundation to increase awareness on preterm labor as well as raise money to support families at local Richmond-area Neonatal Intensive Care Units.