The first few weeks of being home I was surprisingly in good spirits. In order for me to feel that way I had to have a plan. I made a schedule of when I would go see Jonathan each day. Somehow having that schedule made things a little better, at least I knew what I was going to do. A few days after I had come home I went to visit Jonathan and I asked to hold him skin to skin. I sat in the chair while I waited for the nurse to work through the tubes and cords that were hooked to him. Then, she handed me this tiny beautiful boy and I placed him in my shirt next to my chest. I settled in for what I thought would be three hours of sweet tender bonding moments. Instead, Jonathan kept having Brady episodes. That is when the baby’s heart rate starts to decrease. The nurse told me that when that happened I needed to stimulate him by rubbing his back or his head. He had a few of those episodes and then his oxygen levels started dropping. He wasn’t handling the skin to skin contact very well. It seemed to be a little too overwhelming for him. The nurse suggested that we put him back. I was filled with feelings of quilt, inadequacy, and worry. I felt guilty because I felt that the fact that he was struggling was my fault. I was the one who asked to hold him in the first place. I felt inadequate because all you hear is how skin to skin is supposed to be so good for babies. That contact in supposed to help them on so many levels, breathing, digestion, sleeping, etc. Here I am trying to hold him in this way that is supposed to help him just because I’m his mom and he’s my baby and he can’t handle it. I had thoughts like, is something wrong with me? Was I too stressed? Did I need to relax more? I put him back only being able to hold him for maybe about 45 minutes. The next day I tried again, hoping yesterday was just a fluke. He only lasted about 20 minutes that time. When he was in his incubator bed he thrived, his stats were normal and he was content. When I held him his stats would drop and he seemed fidgety and uncomfortable. It was a hard thing to realize that my baby was better off with me not holding him, at least for the time being. I knew that wouldn’t last forever but for that time, not holding him was what he needed to thrive and grow. Once I realized that he did better without being handled I seemed to be a little okay with it. I still blamed myself for it, I thought there was something wrong with me. The goal at the time was just to keep him healthy and help him grow and if leaving him in his bed was going to help him than that was what we were going to do.
The next few weeks I didn’t hold him very much. I rarely asked and would only hold him if a nurse asked me if I wanted to. I was so nervous about repeating what had happened before. Most of the time my visits consisted of me putting my hands through the side of his bed, one hand on his head and the other over his body. I would always put my finger in his hand and we would holds hands for an hour or so. An hour was about all I could take. Looking at him and touching him just made me want to hold him even more. The more I looked at him with his PICC line, oxygen, feeding tube, leads, and pulsometer just reminding me that I couldn’t hold him no matter how much I wanted to. There were days I just couldn’t handle being there for very much longer. Every time I’d leave the NICU I would just beat myself up because I thought I should stay longer and I felt guilty that I couldn’t. I would think that the nurses probably thought I was a horrible mother because I only stayed for an hour each day. The drive home during that time was brutal.
Things were progressing nicely for Jonathan. He was on an increased feeding schedule where they would increase his feedings every few hours. I became obsessed with this schedule and with pumping. I made sure that my pumping schedule was the same as his feeding schedule. Things were on track and he was doing well. His PICC line came out about two weeks in and he was only on limited oxygen. I would visit every night and call the NICU first thing in the morning to see how Jonathan did that night. Russ would spend his lunch hour with Jonathan each day as well. The NICU doctor would call me each day after he did his rounds to let me know how his examination of Jonathan went. One day the doctor called me and said they were concerned about the size of his belly. They stopped his feedings to give his stomach a rest to see if that would help. It didn’t help so they ran some labs to make sure there wasn’t any infection going through his body. They put an IV back in so he wouldn’t get dehydrated. When I would visit him I could tell he was uncomfortable. The labs came back negative, which was a good sign. He basically had gas and that made his belly big. It was excruciating to see my son in pain and not be able to hold him. I think I was only able to stay about 30 minutes that day.
Jonathan was on my mind 24/7. I didn’t sleep very well because I was constantly thinking about how he was doing. I knew his care time schedule so I would often think, okay the nurses are probably changing his diaper now, they are probably checking his vitals now. I felt a constant pull to be there with him but I was also needed at home to care for my three girls. It felt as though my heart was in two places at once and I didn’t know where I should be. When I was physically home my mind would be with Jonathan.
After a few days Jonathan’s tummy issues were on the mend and they were able to resume feedings. The IV was able to come out and things seemed to be back on schedule. Then just a few days later I received a call saying that his tummy was big again. They decided to try feeding him a gentle formula instead of my breast milk. Their thoughts were that he wasn’t able to digest my milk. Once again, I felt like I failed him. Up until now the only thing I was able to do to help my son was to pump and take my milk to the hospital. Now that wasn’t even helping him. I didn’t handle that news very well. However, Jonathan seemed to be digesting this new formula much better than my milk so I was happy that he was doing better.
We were back on schedule and Jonathan was growing rapidly. He was able to be off of oxygen. Russ and I were there visiting him when the repertory therapist took of oxygen cannula out of his nose. I was so nervous but he did so well. We went about three weeks without any major hiccups. His tummy would occasionally get big so they would hold a feeding or two then he would be just fine. He hit four pounds and was able to get out of the isolet bed or incubator bed. He was able to handle being held more and more. My visits quickly turned into two to three hour visits. Even though it was still hard and there wasn’t a day where I didn’t break down into uncontrollable sobs, I was settling into our new ‘normal’.