If you haven’t read my other post about our NICU experience, click here to read it first.
We left off with my daughter’s admission to the NICU in a larger hospital downtown. After we left that day, they did another Enema to try and dislodge her bowel blockage.
The first night away from her, I could hardly sleep. I woke up over and over. I finally called the NICU to check on her in the wee hours of the morning. I was greeted by a sweet nurse on the other line, telling me that our daughter was doing great. A reserved feeling of relief swept over me.
The next day, before I left for the hospital, we received a call from one of our daughter’s doctors. She told us that the nurses had blown quite a few of our daughter’s veins with IV’s, and they had to put an IV in her head. The doctor said she wanted to place a PICC line.
When I heard the words “PICC line,” I was terrified. A PICC line is a long tube put into your arm’s veins that goes to your heart for those who don’t know. In our daughter’s case, they wanted the PICC so that they didn’t have to keep finding IV sites and blowing veins. They didn’t want to be in a situation where they couldn’t get an IV because that was how she received all her nutrition and fluids.
I explained that I had reservations about a PICC line because if it were to get infected, the infection would go straight to her heart. I was scared. My new baby has a terminal illness, she is in the NICU, and there is a Pandemic. I couldn’t take one more thing to worry about. I asked if there was an alternative. Could we just wait and see if the enema worked, and she could start eating again? I told the doctor I would like to wait until we got to the hospital to talk in-person. She agreed, and I left the house.
I spoke with our daughter’s doctors when I got to the NICU. I started crying during our conversation. I was so overwhelmed with this new world of tough medical decisions. I didn’t want to get a PICC line if our daughter was going to be able to eat again in the next day or so. Still, I didn’t want to get into a situation where there was an emergency because I chose not to start a PICC. Ultimately, I decided to let them place the PICC line.
A lot of our time in the NICU is a blur now. Our daughter had a few more enemas to try and clear the bowel blockage. The doctors were pretty sure she would need surgery to remove the blockage.
After a long day at the NICU, without much change, I came home. That night, I stood in the shower reliving the events of the day in my head. As the water ran over me, tears began to flood my eyes. I let myself cry as I begged God to make the bowel blockage clear so that our daughter could start to heal and come home. My anxiety and sadness did not leave me, but I felt peace. I felt God there with me, telling me everything was going to work out.
I finished my shower and joined my husband in bed. We sat and talked about how we were feeling and our fears. I told my husband that I had broken down in the shower because I was overwhelmed and begged God to help. He told me that, while I was in the shower, he prayed too. I felt warmth fill my soul. We both knew to turn to God in our time of struggle.
When I got to the NICU the next day, they told me that she had pooped during the night. She had pooped right around the time my husband and I poured our hearts out to God. It was a miracle. The day before, the doctor had basically told me that she was sure that our daughter would need surgery. God is more powerful. He gave us a miracle, and our daughter began to flourish.
The rest of her NICU stay was a blur. Within a couple of days, she was allowed to begin drinking bottles of my breast milk. The next milestone was getting her to gain weight and drink enough milk each feed to go home. We kept holding our breath that she would continue to poop and eat. She did.
One day, out of the blue, her doctor told me that she would be able to come home the next day. We met with her social worker and got the paperwork taken care of. That evening, another one of her doctors told us she would not be able to come home for a couple more days. I was devastated and angry. Don’t tell me she can go home and then take it back.
When we called in the morning, the nurse told us she had been eating the amount she needed to be discharged. We asked to speak with her doctor before seeing her that day to know for sure if she could come with us. The doctor called and gave us some options. We could take her home today, or I could spend the night in the parent rooms with her in the hospital. There was no question that we wanted our baby girl home with us as soon as possible.
We packed up the car with our daughter’s car seat and stroller and left the house. We were so excited because we were both allowed to go into the hospital to get her. We arrived at the hospital, finished the necessary paperwork, watched the CPR video, and impatiently waited for the final notes to be added to her chart. When we got the final green light, we put our sweet baby girl in her car seat with the biggest smiles on our face and left the hospital NICU for the last time with our daughter.
Our NICU stay was brief and comparatively easy, but it changed our lives. We gained empathy during our stay for other parents who have their own NICU journeys. We gained knowledge of some medical procedures that we will no doubt experience again. We learned how to better advocate for our children in medical settings. Most importantly, we gained a stronger testimony of the power of God.
Here We Go Egan 