Part VI: A Waddle In Time

My purpose in life was defined by spending every waking minute as much time as possible in the NICU with my babies. When I would wake up in the morning, I would pump, eat breakfast, shower, get dressed and determine out who was going to take me to the hospital since I was recovering from my c-section and unable to drive.

For the first couple of weeks, there were only two options for transport.

1) Charlie, who had returned to work. He did not plan to start his 12 weeks of paternity leave until the babies came home from the hospital. (We were lucky that he had stockpiled vacation time and was able to take advantage of the Family Medical Leave Act in California.)

2) Rowena, a good friend who had been my right-hand person at work before I went on maternity leave.

Sometimes, Charlie and Rowena would come in to the NICU with me to visit for a few minutes before they had to leave for the office. But usually, they would drop me off at the front door to the hospital and promise to pick me up at the end of the day, typically 9 to 10 hours later.

When I would arrive at the NICU, I would scrub up - make sure no one was trying to sneak extra family members inside - turn whatever milk I had pumped over to the nurses for them to store for the next feeding, and settle in for a long day with my babies.

This was my job, seven days a week, and there was no place more important for me to be. When I wasn't at the NICU, I would get panicky. A few days after the babies were born and I was enroute to the hospital ... it was pouring rain and we were stuck in traffic. At first I worried that if we were ever in a car accident - we would leave behind three orphans. No one, not even us, knew what we wanted to have happen with the children in the event Charlie and I perished. The longer we sat in traffic, the more panicky I became ... until the point that I was gasping for breath and crying uncontrollably.

Maybe it was hormones or maybe it was because I had three premature infants in the hospital. I think it was a combination of the two factors. But the only time I felt like I could breathe normally and my heart didn't pound out of my chest, was when I was sitting in the NICU with my babies.

In the beginning, I was terribly afraid of all the wires and monitors, and would frantically call for the nurses whenever an alarm would sound. But with time, I navigated around the incubators and cords like a professional. If an alarm would trigger, I would do a quick scan of the screens to identify which baby was having the issue and then I would determine whether the alarm was sounding because a wire had come loose - or if there was an actual problem.

I could identify if the reason the alarm had sounded was because the oxygen saturation levels had dropped ... or if the babies heart rate had dipped. When we were still on the high-risk side of the NICU and the ratio of nurses to babies was 1:2, a nurse would immediately respond to an alarm before I could stand up. But when we transitioned to the low-risk side of the NICU and the ratio of nurses to babies was 1:4 ... there might be a slower response time for a sounding alarm. (i.e., 6 seconds as opposed to 2.)

There were many times I would evaluate the reason for the alarm and make the necessary adjustments to my baby. If the oxygen saturation levels dropped or their heart rate dipped, I would gently nudge them so that they would arouse from their deep slumber and take a breath. If a lead had slipped loose, I would secure the line. Usually, this would stop the alarm immediately, but if it didn't ... I would scream summon for a nurse, who by this time, was typically standing next to me.

I gingerly learned how to change diapers, through the tiny incubator door, and was amazed that even the preemie sized diapers, which were no bigger than a Kleenex, were huge on our 3-pound infants. The babies were removed from their incubators only when they were able to maintain their own body temperature. Pic lines and umbilical catheters were removed when the babies started receiving their nutrition from gavage tubes.

A week after they were born, Elizabeth was transitioned to the low-risk side of the NICU ... followed by William later in the day ... followed hours later by Carolyn. Even though William was on the low-risk side, he continued to receive oxygen via a nasal cannula until he was almost two weeks old. Although I was excited that our babies were no longer considered "high-risk", I was concerned that they would not be getting the same level of nursing attention that they were before. We had known and come to trust all of the nurses on the high-risk side and I was uncertain if the level of care that they were going to receive would be consistent with what we had experienced.

After getting to know the nurses on the low-risk side of the NICU, I quickly determined who I liked and requested that we be assigned to a specific few. There was Jen, Somer, Marcela, Nicole, Pat and Pam - our favorite night nurse. Each of the babies were given a small book while in the NICU and the nurses that would care for them would jot a note as they had time, during their shift. These books were a wonderful gift while our babies were in the hospital, because we could later read the thoughtful notes people would leave when we were not present. Charlie and I would add our own thoughts and sentiments to each of the babies books during their hospital stay. (When I look back and read our words from that time, I am instantly transported to the feeling of our NICU experience. To look at our children now, and see how far they have come ... is impossible to believe. I know that we will treasure these books forever.)

Before our babies had mastered the suck, swallow, breathe reflex ... they were receiving all of their nutrition from their gavage tube. I credit the NICU for helping to establish a routine, because from the first day of their lives, our babies were on a 3-hour feeding schedule. Even though I couldn't feed them with a bottle, I would hold each one of them as they would receive breastmilk through their gavage tubes. At first they were only receiving 4 cc's of milk at a time. Still, it might take 10 minutes to complete a feeding, check the gavage tube and verify that there was no "residual"milk that had not been ingested by their little tummies.

I would rotate through all three of my babies and made every attempt to hold each one during their feedings. Even when I wasn't feeding them, I would hold each baby as much as possible. I would sing to them ... read them stories ... and do Kangaroo Care. But mostly, I savored being near our perfect infants and continually pinched myself to check if I was dreaming.

Just as I was starting to feel comfortable around our babies, the transition to a bottle began. Even though feeding a newborn a bottle may not seem like a big deal ... feeding a premature infant a bottle is colossal. Our babies were just learning how to suck and swallow, and sometimes they would forget to breathe. I never will forget the night Charlie was feeding Carolyn and I watched my baby daughter slowly turn from grey to three shades of blue. Charlie quickly pulled the nipple from her mouth, leaned her forward and started to firmly rub her back ... hoping that it would stimulate her to take a deep breath.

Instead, she turned purple.

I jumped out of my chair and yelled for the nurse, who had already reached for an oxygen mask. She took Carolyn from Charlie, put the oxygen mask on her face and while rubbing her back, softly coaxed "Breathe, baby ... breathe." It was only when I saw my infant's complexion return to pink, did I realize that I had stopped breathing, too.

Sometimes, the babies would tucker out from trying to take their feeding and would need to receive the remainder of their meal from the gavage tube. Each and everyday, I thought about how lucky we were that our children were born in a day and age when modern technology not only brought them to us ... but would help them to survive.

While the babies were being transitioned to the bottle, my trusty lactation consultants reappeared and began encouraging me to try nursing. Even though I eventually did go on to nurse all three of the babies successfully, we never got the hang of nursing while we were in the NICU. Still, I continued pumping. During my visits, I would take a 20-minute break to pump, every 3-hours. Usually, I packed lots of healthy snacks and water with me for my full day in the hospital, so I didn't have to leave for lunch. While I was hooked up to the pump and with the help of my hands free pump bra, I would enjoy cheese, granola bars, graham crackers, carrot sticks and fresh fruit. Sometimes, I'd knit and used my pumping sessions to create small chenile blankets for each of the babies.

All things seemed to be going well with our "feeders and growers", until October 29th.

I was visiting the hospital that day with Alex and Kathleen, who had just arrived from Arizona for the first time to visit the babies. While I was holding William during his feeding, I noticed that he was particularly fussy. Unlike the times before when he would contentedly take his bottle, he was squirming and appeared unable to get comfortable. I summoned the nurse, Brandy, a woman who was filling in for our chief nurse, and who I had not met before. She suggested that we feed him the rest of his meal via gavage tube, which was still in place.

While I held William on my chest, he continued to squirm and began crying. With the exception of the times our babies had to receive an IV or have their blood checked via a prick on the heel ... I never heard them cry. This was highly unusual and my maternal alert was sounding.

I called for Brandy and told her that something was wrong. She suggested that perhaps William was just being fussy and needed to sleep. In my heart, I knew that wasn't the reason. When Brandy checked William's gavage tube and noted that he had approximately 50% residual in his line, I requested that a neonatologist be paged. Unfortunately, it was getting late in the afternoon and a shift change was coming up. We were required to vacate the NICU during shift changes - and since Alex and Kathleen were visiting - we all had prior plans to go to dinner that evening.

By the time we were leaving the NICU, the neonatologist had not yet appeared. I spoke with the charge nurse and told her that I was concerned about William and asked if she please have the nurse on duty that evening call and give me an update. Only after she convinced me that everything would be fine ... did I begrudgingly leave the hospital.

Still, I had an uneasy feeling.

We enjoyed a nice dinner and my cell phone didn't ring once. Following our meal, I told Charlie that we needed to return to the hospital, my instinct said I needed to be with our son. It was 9:30 at night and we were 30-minutes away. A man who has always appreciated a good night sleep, Charlie suggested that we call and talk to the nurse and find out how William was doing. If his condition warranted a visit - we would go. Otherwise, we would get a good night sleep and visit first thing in the morning.

Only moderately convinced, I made the call.

The nurse on duty was one of our favorites and she said that William had been a little fussy earlier, but was sleeping well at the moment. She recommended that we stay home and if his condition changed, she would call us immediately. Unlike Brandy, I trusted this nurse. I thanked her for looking after our babies ... changed in to my pajamas ... pumped ... and settled in to bed.

The phone woke us from a sound sleep at 2 AM. My heart instantly sunk and I felt horribly nauseous as I heard Charlie on the line. William had been rushed back to the high risk side of the NICU where he had been re-intubated and was receiving high levels of antibiotics. Our baby boy was suddenly very ill and fighting for his life.

... to be continued ...