When I first saw my son in the NICU, it was over FaceTime with my brother in law. I was still at the hospital where he was born, recovering from surgery. I wasn’t able to go in person until the day after he was born. While I think most people’s reaction to going to see a baby in the NICU would be fear or sadness, I felt more of a happy anticipation. I was just excited that I was going to get to be with my baby. 36 hours doesn’t sound long, but it feels like a lifetime when you are separated from your newborn. I was looking forward to being able to be with him, and finally getting to hold him.
When he was first admitted to the NICU, he was intubated-meaning he had a breathing tube in his throat. By the time I got there, he had already moved on to CPAP, which is a combination of a nasal mask and little tubes in the nose. Already this was good progress. One of the first things I wanted to do was hold him skin to skin. The nurses were happy to hear that and happy to help. The first time it took 2 or 3 nurses to get him out of bed and over to me. He had to carefully be lifted out of his isolet, carried over to me waiting in a chair, and be placed on my chest. All the wires and tubes had to be looked after to make sure nothing was caught or tangled. We would sit there until I needed to start pumping, and I would reluctantly press my call button to have the nurses put him back.
This was my highlight of the day for each day that followed. I loved holding him. I would plan my day on getting in at least an hour of holding time. As he progressed and got bigger it was easier and I could pick him up whenever I wanted, but at the beginning it had to be timed out right and I needed the nurses to help me get him set up.
In those early days, his size was almost intimidating. Intimidating because he was so tiny, I felt as if I might break him. I think that’s how many people feel about babies when they are first born, but it is intensified when they are under 4 lbs. and hooked up to a host of medical equipment. I remember the first time I was in his room and the nurse asked if I wanted to change his diaper. I wanted to say, “No, he’s too tiny, you do it!” But I couldn’t skirt my motherly duties, he was my son and I needed to start caring for him however I could. The same sorts of feelings surfaced the first time I gave him a bath. The nurses were so calm about it while I was so intent on this fragile boy and trying not to let him slip.
The first couple weeks we were there seemed to go by pretty quickly. It seemed each day he was meeting new goals and there were big changes. Toward the last half when he was just on a feeding tube, the time started to slow. We were waiting on him to learn to eat from a bottle and some days it seemed we would never get there. And I felt the pressure of trying to get him to eat. Even though I knew logically there was nothing I could do to make him eat more from the bottle-I felt the weight of knowing that if I could just get him to do it somehow, we could go home.
Figuring out a new routine was a little challenging because we had to think about our daughter. While I was happy to go sit in a NICU room all day long, she could only tolerate small doses. My husband became her primary care giver so I could focus on being in the NICU. Sometimes my in laws would come pick her up for a few days to stay at their house and play with her cousins-which she loved! Other days we would wake up, get ready, and eat breakfast together. Then we would all go over to the hospital and spend time in baby boy’s room. We kept a stash of toys and books in his NICU room for her and often resorted to movies on the iPad to entertain her while the doctors were updating us. Once she had her fill of being there, my husband would take her on a walk. There were many fun courtyards and areas of the hospital for her to play at. We would meet back up for lunch, sometimes in the hospital cafeteria and sometimes at the Ronald McDonald house. After lunch my husband would put my daughter down for a nap and I would go back to the NICU. Once she woke up from her nap he would bring her back over to the hospital or play in the room until it was time for us to meet for dinner. After dinner it was bath and bedtime. Sometimes I would go back to the NICU after she went to bed and sometimes I would stay and go to bed myself.
My emotions were up and down and all over the place. I struggled a lot with guilt. I would feel guilty as I watched my crying daughter leave yelling my name. I would feel guilty if I spent a few hours away from the NICU. I knew my son would be taken care of in the NICU, but I would feel terrible when I would think about him being in his room alone, when we were supposed to still be connected. My daughter loved spending time with her cousins and had so much fun swimming and playing with them, but I would feel like I was letting her down if I wasn’t with her because her whole life turned upside down. She went from spending all day everyday with me, to sometimes not seeing me for a couple days. And I felt we couldn’t adequately explain the situation to her. I worried that she would feel that I was abandoning her. I would burst into tears when she came “home” to us after a day or two with her cousins because I missed her so much.
There was a lot of stress worrying about our son in the beginning. When we didn’t know how long he would need breathing support, or how long it would be before we could take him home, or if there would be any long term complications. And even under all this there was always an enormous amount of gratitude for how well he was doing, when I knew things could’ve been much more difficult.
The day we were released almost seemed to come out of nowhere. That week he had one day where he drank several full feeds in a row. His volume per feed increased after that and for the days that followed his feeding was up and down again. On Thursday I came in to find out he had taken a couple full feeds during the night. While we were getting ready for the next one, the little guy pulled his feeding tube right out of his nose. The nurses decided to leave it out and just see how he would do with his next feed. If he took it all from the bottle, they would leave it out. If he didn’t finish the next couple feeds they would put it back in. It ended up that he took a full feed from the bottle, then another, and another. There started to be talk about discharge over the weekend. From then I was on pins and needles each feed to see if he would keep it up. We were feeling excited about the possibility of getting released without getting our hopes up too much. I felt cautiously optimistic up until the nurse told me Saturday morning that his discharge order had been written. Although I had known this was coming, it didn’t stop me from being totally overwhelmed with the official “You get to go home!”
In the big picture 6 weeks is not a lot of time. While you’re in the midst of it, it can feel like forever. I am eternally grateful for all the wonderful people working at Dell Children’s. Their help, care, and encouragement means more to me than they will ever know. I will forever hold many of them in my heart. We are so happy to have made it to the “other side” and to be home with our healthy baby boy. Now we are getting used to the new normal of our family of 4!