Nurse's Birth Experiences Strengthen Bonds With Other NICU Parents
On June 7, 2001, I gave birth to my firstborn. My pregnancy was wonderful, and I loved being pregnant. I didn't know the baby's sex until Dr. Robinson delivered him and said,"You have a beautiful boy, but I need to let you know he has a cleft." My husband and I were shocked. Being a nurse, my first concern was whether he had a syndrome. I felt major relief when I heard he was OK. I quickly learned what families feel when they don't have that "normal baby experience."
When Nicholas turned one, my husband and I got pregnant with our second child. During my pregnancy they did extra ultrasounds to check for clefts. Everything seemed OK. At 38 weeks, I was in labor but Matthew wasn't positioned properly so we needed to do a C-section. Immediately after his delivery, the NICU team brought him to the NICU. I was worried as a mom... but I kept telling my self there was nothing to be concerned about. I assumed it was because his lungs weren't compressed through my birth canal and he just needed a little oxygen. He was born in the middle of the night and I assumed he would be with me, in my room, the next day.
When my nausea went away, I went to see him. He was on CPAP and a high percentage of oxygen. I just remember that he was retracting so badly. As a nurse I told my self he looked like he needed to be intubated, but I was trying to be a mom. I felt a little frozen and was just going with the moment. He did end up intubated and on the vent with 100% oxygen. I was crying uncontrollably. They didn't know why my son was so sick, or why he required so much oxygen. That night when I went to his bedside, I still felt frozen. I was afraid to ask questions because I didn't want to hear the answers.
Matthew was eventually transferred to another NICU. During his NICU stay, Matthew's lungs collapsed. He was put on ECMO - a lung bypass machine whose purpose is to rest the lungs - and he received two chest tubes. It was a nightmare.... the worst had come... I remembered the resident saying that ECMO was the last resort. We asked for the chaplin and when she arrived we asked her to get a priest to baptize my son. After five or six days, Matthew was able to be weaned off ECMO. They placed him on CPAP, then nasal canula and he was moved to the pediatric floor. We now had other obstacles. Matthew required methadone for withdrawal and had paralyzed vocal cords from the ECMO, but fortunately he was discharged with an ngt and thickened formula. We worked on getting him to bottle feed all his feedings. He required thickeners until about one year of age because he was aspirating milk into his lungs because of his paralyzed vocal cord. Matthew's first two years of life were very busy with physical therapy, play therapy and speech therapy because of his low muscle tone. He couldn't even reach his tongue to the top of his mouth.
Today, he is doing well. He is in the second grade and goes to the third grade for math and reading. He is perfect - my miracle child. I look back and can't believe what I have gone through. To this day when I think about what we went through I can actually relive the experience with tears falling down my face. For years I wondered, "Why me?". Now I know those experiences made me a better person and a better nurse.
Because of my NICU experiences, I understand the spectrum of emotions most of our parents go through. I understand that parents with short-term stays and less "sick" babies also feel robbed of that "normal" experience we all dream of. I also have lived through having a very sick baby and the torment of not knowing what is going to happen from day to day. After going through all I have with my own babies, I really feel with and for our NICU parents. I truly will do anything to make their experience the best it can be. Serving on our Family Advisory Council is another rewarding way for me to help NICU families. I feel honored that my commitment to family-centered care has been recognized by the Family Advisory Council and to be one of few staff members on the Council.