PCN

After twelve long days of being in the NICU, Josh was transferred down the hall to the PCN during shift change and Matt and I looked forward that night to seeing his new digs. We made the very unfortunate mistake of being too excited too soon. If the NICU had been a quiet vessel in which Josh grew, he was being thrown into the very deep end of the ocean.

We happened to be in the NICU and PCN during a very slow time. The babies were spread out over the four wings of the NICU, but in the PCN, the simply closed half of it and clustered the babies together. We walked in, scrubbed in and went about the business of finding our son. He was in a tiny wing with five other babies. The other babies were in open cribs, draped by quilts. Josh was still in his isolet until he could maintain his temperature outside of it on his own.

The sheer volume of the place is what throws you. The machines that quietly beeped and hummed in the NICU are turned up in the PCN, as the ratio from baby to nurse went from 2 to1 to four to one. Because they had to watch the babies for signs of distress, the machines constantly beeped. The phone that the parents caledl their nurses on was from the 60's. The shrill ring of it was enough to startle you out of your chair, if you were lucky enough to find a chair. Because of the space and the number of parents, there just was not any room. In the corner across from us was a metal crib and in it a baby who looked to be about six months old. She was screaming.

We looked around like victims of an accident, shaken with the shock of it all. We had not even spoken to his nurse and we had been there for twenty minutes. We had no idea what was happening or what to expect. When she finally came over to us, pushing the scale to get his night time vital signs, she was cold and abrupt. We asked if we could give him his bath and she gave us a look that made us understand that in here, we were not in charge. "We don’t do baths in here," she replied. That was the end of that conversation.

We walked to the car and drove home in silence. The only sound from either of us was the occasional sniffle, as we both cried the whole way home. Picking up our oldest son, we could not even explain to my parents what had happened as we could not understand it ourselves. We put our son to bed, poured a drink, and just lay on the couch together. As hard as I tried, I could not imagine how I would have the strength to go in the next day.

Being in a situation like this makes your faith in God and fate grow. You have to believe there is a reason for it all or you would go insane. After the baby dying in the NICU and having seen the PCN, the sanity bus I was riding was making a stop at post partum and terrible depression. I could feel the weight of it all in my heart. I could feel my ability to pretend that I was holding it all together slipping. I sobbed like a baby on the phone with Tracy and Melissa on my drive to the hospital. I had to find way to get through it. I just did not know how it would be possible.
Daylight brought a new warmth to the PCN and my morning nurse greeted me as I scrubbed in. She was cheerful and led me to Josh’s corner, where he was asleep in a tiny little plastic bed. He looked so small, so perfect. I could touch him without opening a door. He finally seemed like a real baby. I was so taken with his in his new home, and I did not have the chance to notice that the baby in the "cage" was no longer there. In our room there were six small beds, all the babies sleeping soundly. The relief that flooded through me came pouring out as I sat in the pumping room and sobbed.

I liked to tell people that Josh is a tough little cookie and that he has been trouble since the moment that the pregnancy test turned positive. The one thing I clearly understood when I was pregnant with him was that he was the boss. His gorgeous smile and gentle face hide a very ornery young man, so when he decided something would be a certain way, it was going to be that way. Immediately that morning I noticed things he was just not happy about.

His tube was back in his mouth, which caused him to gag constantly. I asked the nurse to move it to his nose and she said to ask the Dr.X when rounds began. He was now sleeping on his back instead of his stomach and was wrapped so tightly that burritos would be jealous. In the NICU he slept on his stomach, his tiny right hand next to his mouth. In the PCN he was swaddled to a nearly paralyzed state with his arms down by his sides to keep him from pulling his feeding tube out. When tDr. X and her residents came in that morning I was ready.

I once again argued against the HMF in the breast milk. He seemed to be having reflux. I believed it was causing him to have the bradys. Dr. X vetoed that. I asked if he could have his little hand so he could sleep. No. I very quickly began to understand that she was in charge. I must have looked ready to fight because she said the one thing she could that would change our stand off. Would I like to feed him his first bottle that afternoon? As much as I hated her, I could have hugged her.

My Mom arrived just in time to watch me feed Josh for the first time. There is about an ounce of breast milk in the tiny bottle, as Josh’s appetite had grown. His feeding tube was still in his nose, taped to his face. Until he was able to eat every bottle on his own, they would continue to feed him through the tubes. We were starting a one bottle day and working our way towards eight. Once he was eating well, we could go home. He chugged his bottle like a pro, but my eyes only rarely left the screen that monitored his vitals. With each suck his heart rate dropped, when he really started chugging, he forgot to breathe. When the bottle was done he was exhausted and a moment later he has a brady. The alarms went off, the nurse came and we patted Josh on the back to make him remember that every time his heart stopped, so did his Mom’s.

Almost all preemies have to learn how to drink and breathe at the same time. Caucasian male babies have a harder time than any other babies. In the NICU they called it "wimpy white boy syndrome." The girls flew in and out of the PCN. They staredt drinking and they never stopped. You could not help but be bitter when someone else went home. It was hard enough to fight the rest of the emotions, but jealousy was one that you simply indulged. I was jealous of my friends who were still pregnant, jealous when someone went home, jealous that other people did not have to cry themselves to sleep every night.

Fourteen days had passed since Josh was born. He had only been in the PCN for two days and everything was changing. Babies were becoming well enough to leave. Matt and I had almost adjusted to the PCN when we were given the best gift we would could have been given in there, the gift of friendship.

I do not know how Andrew’s bed came to be across from our bed in this tiny little room, but the second night as Matt and I showed up to spend time with Josh, there sat Leigh and Mike. We had seen them all through the NICU process, I had passed by Leigh in the breast pumping room, we had said hello to them. It was not until tiny Andrew made the scene that I found the smallest spot of brightness before the darkest days began. When we saw Leigh and Mike, introduced ourselves and started talking, I really knew that fate had brought my OB in on that late night to tell me about Andrew’s birth.

Although he was a week older than Josh, Andrew was a little guy. Starting life under the three-pound mark had not stopped his progress and we were so glad to have another family to share the experience with. Each night we would walk into the PCN to find them there, having saved some chairs for us. We called it "cocktail hour" because the PCN opened the doors at 7:30 and we would all meet in the back, ready to see our boys. Leigh and I would often be at the hospital together during the day, trading early labor stories and checking out the boy’s charts from the night before.

Andrew was followed by the nurse practitioner, which made it harder to accept that Dr. X was in charge of Josh. While Andrew was allowed to have three bottles, we were stuck at two. I was complaining to Leigh on our 16th day about how mad I was at the slow pace and the HMF in his bottles when all the alarms sounded in our corner. Josh, who had fallen asleep on my chest after his bottle, was having a brady. His heart rate fell to less than 60 beats per minute and his pulse oxygen plummeted. Leigh and I knew this happened when we weren’t there, but seeing it was terrible. With a little bouncing he was fine again, but over the next couple of hours we sat staring at his monitor, watching him have three more episodes. They gave him more caffeine, which he was already taking daily to prevent such attacks and that seemed to help.

Something in my head just snapped. It was almost as if I heard it. I was not leaving. I did not care about anything else. I was not going home. I was not picking up Ryan. I was never leaving the hospital again. The thoughts that kept me grounded, the ones that made me put one foot in front of the other vanished. I called my Mom to tell her that I was not leaving the hospital and to please get Ryan. I did not leave the hospital until 10:00 that night and even then, I think Matt had to practically drag me.

I had been wading in the dark water for many weeks. I did it with a smile. I very rarely allowed myself to think too much about what was happening or how it was all working. I could handle it. If my son could handle sleeping in a box surrounded by crying babies, loud nurses, alarms going off and wanting his Mom, than the least I could do is handle the stress on my end. Each day I moved like a machine. I would be getting Ryan ready for school, pumping, packing the diaper bag with the midnight feeding of breast milk, packing Ryan’s lunch, taking him to school, driving to the NICU, the nightmare of parking, the long travel in, scrubbing in, spending a couple of hours at peace starting at Josh, off to the pump room to pump, a quick goodbye and then off to pick up Ryan, put him down for nap, handle laundry and bill-paying and all the chores of daily life only then to face the long wait until Matt came home so that we could drop Ryan off and head back to the hospital. I could handle it all, but when the bradys came, the world just came crashing down.

No one could continue at a pace like that, being that scared for that long. When I was at home, all I could do was thinking about being with Josh. I would clean anything in sight just to have my mind off of it. When the bradys started happening with some regularity, it was all I could do not to call the hospital every fifteen minutes to check on him. I felt like being could stop it from happening. Although I was told by every nurse and Doctor that this was a completely normal stage of development for a preemie, I could not be reassured. I started to think he would never come home.

They call it the "H word" when you are in the PCN. Home was never something you said out loud. Home was not a thought you should have until someone says it to you first, but it is the only thing you think about. When I woke up that Sunday morning, his 17th day of life, I couldn’t move. I was terrified all the time. I would wake up in the night just to call in to see how he was. I was always terrified that they would tell me he stopped breathing, that they moved him back to the NICU or something far worse. Fear engulfed me. With shaking hands I would dial the phone, each second longer than the last until I would get his nurse who told me that morning that Josh had five bradys the night before.

I could not move off the couch on that Sunday. I curled into a little ball and wept. Nothing could make me move. I didn’t pump. I didn’t call the hospital. I refused to go in. I knew the truth. Josh was never coming home. He would never see his nursery. He would never leave the hospital. I did not think he was going to die, but the finite time frame I had in my mind was crushed by his bardycardia attacks. I just did not feel as though I had the ability to continue. My parents went in that night instead of us. Matt’s focus all day had been to get me to stop repeating one sentence. "He is never coming home." My hope was gone.

I drove like a maniac on Monday morning after dropping Ryan off. I had gone an entire day without seeing him. Everyone was saying it was a good thing to take a break for a day, but I knew the lie. I could not ask Josh to deal with his harsh world if I could not. With that in mind, I simply checked back into sanity. I imagine that I didn’t seem that sane, as when the Grump appeared like Santa and her elves, handing out her permission for one more bottle a day, I pounced on her. I wanted him off the HMF. I had done a bit of research and found that with some babies HMF causes reflux which causes the bradys. She didn’t agree, but I fought harder. I had been against it from the beginning, but since he was packing on two ounces a day, she fought back. Furious, I left shortly thereafter.

For days I felt like I was wading just above the surface of the water. I went back and forth, continued to struggle with pumping, thought of little else but Josh. At night I would lie on the couch with my hands on my empty womb. There was no baby, but there was also no baby in our nursery. Something had to happen. I was on the verge of losing it once again,
And then, like a ray of light, Dr. H. appeared. He was taking over rounds from the Grump for the long weekend and I very nearly kissed him when he appeared at Josh’s bed. I begged him to take Josh off the HMF. While I was talking he was reading his chart. I explained about his bradys, how I felt they were caused by the HMF and the reflux it could bring. I asked him to let me give him breastmilk for 24 hours. If the plan did not work, they could put it back in. He smiled and agreed. He also took him off the caffeine and bumped his up to four bottles a day.

I was estatic. I told the nurse the new orders and I left for the day. When I called to check in that afternoon, he had not had one brady. When we arrived that night, Leigh and Mike were there and delighted in our news. Andrew was progressing along so well that they were not monitoring his pulse oxygen anymore. This was big news, as we spent the majority of our time staring at the monitors and one less thing to look at was always a good sign. We laughed and got the boys out of their beds for their nightly routine.

We would change their diapers, take their tempatures and then get their bottles ready. The nurse would bring our bottles and the four of us would rock and talk and watch our monitors and each other’s. They were our partners in crime. They were the only people who could understand what we were going through.

That night I slept like I had not since the sleeping pill. I did not wake up at 3am to call the hospital. In the morning when I called I knew what they would tell me and I was not disappointed. Josh had no bradys. With his weight at five pounds, he just needed to go seven days without a brady and he could come home. When we saw Dr. H today I was careful not to gloat. He just smiled and said, "Sometimes Moms know best." It was February 8th. Josh was three weeks old.