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Our son was born. He was alive. He was breathing. Those were the only thoughts I had after the birth of our son in June, 2011; 6 months after we received his prenatal diagnosis of Trisomy 18.

I looked into the eyes of this amazing, beautiful, little boy the morning after he was born. He had already surpassed medical expectations by being born alive, but he could not figure out how to swallow/suck. Consequently, he could not eat. We tried giving him a small syringe of breast milk, but he coughed and struggled to breathe. He appeared to be getting weaker. He had not yet urinated (something babies are supposed to do within 24 hours after they are born), and he had not yet eaten.

I could feel my own anxieties rising. My heart kept telling me that he was meant to be with our family, but my brain knew what we had been told by physicians, our experience with our first son, and the weakening little boy in front of me. I held him close and tried to ignore the lost feeling that was taking over me.

The birth of a baby is supposed to be filled with joy and excitement. Yet our room was his death bed. The room was cold and death filled every shadow. Hospice came with papers to admit our son for when we went home. The nurse was kind and wonderfully sweet to our beautiful boy. We didn’t hesitate in signing the papers, because that was what we were supposed to do. Our son had a diagnosis that gave him a death sentence.

Shortly after the hospice nurse left, our son ceased breathing, and he turned blue. My heart sank to the floor. This could not be the end. This did not feel right. My husband pushed the staff emergency button and staff flooded our room. Our numerous family and friends left the room. I rubbed his tummy and back to try to stimulate him. The nurses took his sweet, limp, blue body to assess him.

He was trying to breathe. They placed him on oxygen, and we demanded oxygen monitoring as well.

He began to pink back up, but my previous fears crept back in, and my own self doubt began to rise along with the questions: Are we making the right choices? Are we doing everything we need to do for him? What are we supposed to do?

I have been with multiple adults during their finals hours of life on earth within my own professional practice as a nurse. I held our first son in my arms as he took his final breaths. But, in all those situations, it seemed like it was the right time for death. This did not feel like the right time.

We attempted feeding again. We failed at feeding again. We checked diapers, but we failed to change any. We watched him turn blue three more times that day. I felt hopelessness sinking in. I feared having to tell our sons their baby brother was dead. I feared not leaving the hospital with our baby. I feared leaving the hospital with our baby. What if he died when we were sleeping? How could I ever forgive myself if he died alone in his bed? What if he couldn’t tolerate being in a car seat, and he died in the car on the way home?

I wanted to be home with our family, yet I was so afraid of getting there and of him dying at night.

Our pediatrician came in and encouraged a feeding tube. We had already agreed to this while we were pregnant, but our family and the nurses needed to hear it from our physician. It took eight attempts by multiple nurses, but a feeding tube was finally placed. It went in his nose and down to his stomach. He received his first teaspoon of breast milk in his feeding tube.

Within 15 minutes, he opened his sweet blue eyes. His breathing calmed. His skin pinked up. My hope returned.

His big brothers arrived to see him, and they were scared. We tried to prepare them for a feeding tube and oxygen before their brother was born, but seeing it in reality scared them. We talked about the cool way their brother got to eat; “How cool is it that he eats through his nose!” We talked about the oxygen making it easier for him to breathe. We encouraged them to hold him, kiss him, talk to him, sing to him, and love him.

He stayed skin-to-skin with me as much as possible. We kept attempting to feed him by mouth, but we followed it with tube feeding him.

The second night after his birth was much shorter. We had family come and take turns watching him so that I could sleep. I found comfort in knowing that someone would wake me if anything happened. The skies opened up that night, and it poured rain with lightning and thunder. It had been cool up until that point, but the rain brought in the heat and humidity.

Our son had no apnea episodes (periods of not breathing) that night, so we prepped for going home the next day. The morning was filled with discharge preparations.

We now had to learn how to work home oxygen equipment: concentrators that take normal room air and concentrate the oxygen to be delivered, oxygen tanks for portable use, regulators that are adjusted to determine the amount of oxygen being delivered, humidifiers so that the oxygen being delivered doesn’t dry out nasal passages, pediatric attachments, tubing, etc. We also were sent home with an apnea monitor that would sound an alarm if he didn’t take a breath for 20 seconds or if his heart rate dropped below 50. Our supplies also included feeding tubes, syringes, and tapes to hold them in place.

We were going home with hospice. We had meals arranged for the next few weeks. We were doing this. Our baby was coming home, and we were going to live life as a family.

Terra Garst

Terra has lived in Omaha her entire life with her husband and four sons. She enjoys being a stay-at-home mom and driver for all her children's events. She is a nurse and uses creativity to get things done! Terra is Nebraska's state chapter chair for Support Organization for Trisomy 18, 13, and related disorders (SOFT) as well as their prenatal outreach contact. She also volunteers for Hope for Trisomy. ...

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