At some point in the night we got his diagnosis- a double spontaneous pneumothorax. Basically, his lungs collapsed during the delivery process. It’s an unexplainable thing that happens to some babies. Nobody did anything wrong, it just happens. The right lung looked better than the left lung and the doctors had high hopes that he would recover on his own with just some observation and breathing assistance. They said that only about 1% of babies need surgery to fix this issue. Well just call us one in a million. By morning, he hadn’t improved and it was time to discuss next steps. They would start by inserting a needle into his chest cavity and attempting to manually inflate the lung, then if that didn’t work, he would have a chest tube procedure.
The next day the chest tube was placed. He only continued to decline. It felt like bad news at every turn. We would talk about best case and worst case scenarios and every single time, it was the worst case scenario playing out. It seemed like we couldn’t catch a break. And on day 3, we were going home without our baby. I couldn’t fathom it. I couldn’t understand why this was happening to us. I felt horrible. I felt horrible for joking that he was an oops baby. I wondered if God was messing with me for making those jokes. I begged and pleaded with Him to let me keep him. He wasn’t a planned baby, but that didn’t mean he wasn’t a wanted baby. I wanted him very much. I wanted him home with me. I apologized over and over again for making jokes about his surprise appearance. It wasn’t fair to punish him and me and my family like this.
I have friends and family that have had babies spend time in the NICU and they all offered me their opinions and their sympathies. It was nice to know that others had been somewhat in my shoes. But what none of them realized was that this experience was not like theirs, not at all. They were free to visit their baby when they wanted. They could hold their baby. They could hold their partner’s hand through the hard discussions. They could take pictures with their phones or cameras. Their parents and family could visit their new baby in the NICU. That was not our experience. We were in the NICU in the middle of a pandemic. Once we were discharged, the rules were quite strict. One parent, one visit per day. No visitors at all besides mom and dad. No night time visiting hours. No food. No drinks. Masks and gowns on at all times. Phones had to be in hospital provided plastic bags, making every single picture blurry. And for me, because of AJ’s specific condition, no holding him. Top that off with the NICU being an hour away from our home. With two other children at home and not being able to drive myself, I had to find rides to get to the hospital or we had to drag the older girls there and back. It was a logistical nightmare on top of the nightmare that I was already living.
I got much better at being there with him once I was discharged. I was only allowed to visit once per day, if I left the hospital, I couldn't come back inside. So in theory, you would like to sit with baby from open to close, except the no food and drinks rule makes that pretty impossible. My husband would drop me off mid morning and I would sit with AJ until the afternoon. While I was there, I basically just watched him struggle to breathe. Changes were slow. Day by day went on with no real news. I couldn’t hold him. I couldn’t really touch him or talk to him. The doctors said that any stimulation could irritate him and crying could re-collapse the lungs. So I sat by his bassinet doing nothing. At some point, I don’t remember exactly when, I took out my plastic bagged phone and I started writing. I wrote about AJ going on jungle adventures. I wrote about the silly dreams of my oldest daughter and her beautiful smile. I wrote about the fierce determination of my middle child. I wrote about bravery, strength, and resilience; things that I didn’t have much of at the time but prayed that my kids had developed enough to get through this. The writing helped a lot. It was therapeutic and it helped me pass the emptiness in the NICU.
As time went by, the chest tube had done its job and had come out. I was able to change his diapers and even put pants on him. NICU life was hard but becoming my new normal. I write this from my own perspective and often forget that while I was doing the NICU time, my husband was home missing us. He only got to see AJ one time during our stay in the NICU. Everything was so unpredictable and breastfeeding was very important to both of us. We never knew when they would say “ok, he’s ready to try nursing” and neither one of us wanted him to have to be in the NICU any longer than he had to because he wasn’t able to practice nursing. Since breastfeeding was our goal, the hospital wouldn’t discharge him until he had shown proven success and weight gain with breastfeeding.
On day 10, I held my baby boy for the first time. He stared into my eyes right away like he knew who I was. Like we never missed a beat. I was overjoyed. I didn’t have faith that he would know who I was, after all this time being in a box away from me. But he did. The nurse said it was such a sweet moment and she shimmied my phone out of the plastic bag to sneak a non- blurry picture of me holding him. It was the sweetest moment of my life and I am so grateful to have it captured. That nurse may never know the extent of my gratitude for that simple gesture, but it was everything. From that moment on, it was all good news. It was like everything was ok from the moment I got my hands on him. At that point, doctors were telling us that it would be about 2 weeks of feeding practice. Babies as small as him and babies who were on IV fluids as long as him, tend to take a long time to get the hang of breastfeeding and to show weight gain. Not this boy, he knew what this meant and he wanted to get home. It took only 3 days to gain enough weight for discharge and we busted out of there. 13 days. The longest 13 days of my life.
But when it was over, I had a story to write. A story that will, hopefully, help other mamas who are going through difficult times. A story to provide hope and a few laughs during the turmoil. A story to remember this horrible event in a positive light. A story of bravery, strength, and empowerment. In case nobody has told you today- you are brave, you are strong, and you can do this!