Because Charlie and I both wanted to see the girls, but didn't want to unnecessarily take William on busy California freeways or in to a hospital environment, we were very fortunate that my highly qualified mom who is a retired nurse and mother of seven children - was in town to lend her help.
The previous day, when Charlie and I had visited the girls in the NICU, mom stayed home with William. But because all of us were scheduled to participate in an infant CPR class, the four of us went to the hospital Saturday morning. We arrived in the NICU shortly after receiving the call that Elizabeth had been moved to the high risk side.
When we arrived at the hospital, Elizabeth was in an open cradle with heat lights to keep her body temperature regulated. Our tiny baby, barely 4.5 pounds, was hooked up to several IV's and like her brother - less than two weeks earlier - was completely limp. The doctors assured us that she was stable and it did not appear that her case of NEC was nearly as bad as William's had been. Still, every ounce of energy in her tiny body was being used to combat the infection and keep her alive.
After visiting with the girls for a few hours, we retreated to a classroom in the hospital for our CPR training. Before we left the hospital for the day - I went to the pump lounge so I could express milk for Carolyn - since breastmilk was being withheld from Elizabeth. On my way out of the pump lounge, I could hear a baby crying loudly. Although I had not yet mastered the ability to distinguish my babies' cries ... in a nursery full of 60 newborns ... this one sounded familiar.
As I drew closer, I saw that the cry was coming from William. My baby boy was crying louder than I had ever heard before.
The first thing I noticed was that he was squirming. I asked Charlie and my mother what had happened and they told me that they had just finished giving him a bottle of expressed breast milk and he hadn't yet burped. His discomfort was most likely due to gas. When this diagnosis was echoed by the NICU nurses, my mind was put at ease.
Gas. That can certainly be painful - but is nothing to worry about.
We packed up our bags and left the hospital. On our way home, while William continued to sporadically fuss, we stopped by to pick up a pizza. Once we arrived home, we swaddled him in a blanket and laid him on the floor. I had just sat down and had yet to take a bite of pizza, when he erupted in to screams.
Blood curdling screams.
Instantly, I knew something was wrong. This wasn't just gas.
I snatched him up, ran in to the nursery and pulled off his diaper. His stomach did not appear distended, but he was writhing in pain. When it was clear that my level-headed mother was concerned ... I became alarmed. I frantically called the NICU and asked to speak to a nurse. When an individual picked up the phone, who I wrongly assumed had medical training, and I relayed William's history of NEC - what was happening - and asked if I could bring him back ... she told me that once a patient is released from the NICU they do not return. Therefore, if we were concerned about William, we needed to take him to a local emergency room.
I placed calls to our pediatrician and when I didn't hear back immediately ... packed William in his infant carrier and took off out the front door. Never before - and hopefully never again - will I feel as hysterical and desperate in my parenting as I did at that moment in time.
It was 8:00 PM.
While mom stayed home, Charlie and I loaded a screaming William in to the car. We drove to a local hospital and Charlie dropped me off at the ER while I ran inside with our baby. I remember a Border Patrol Agent standing in front of us. He was in obvious pain with a laceration across his face and a shoulder dislocated so badly his hand was able to touch his knee. As soon as this man saw my face streaked with tears, and took one look at the tiny screaming baby in my arms ... despite his own physical trauma, he stepped out of line and ushered us through.
We were seen within minutes. But when our triage nurse told us that he wanted to take a rectal temperature - we hedged. I had a flashback to standing in the NICU talking to one of the more experienced nurses. I clearly remembered her telling me that you should never take a rectal temperature on a premature baby because the risk of causing harm is so great. At the time, William was still five weeks premature.
Charlie and I looked at each other and took an inventory of the patients we'd seen in the hospital. This was a typical hospital ... but there were no other children, definitely no other infants and certainly no preemies, in the ER. Even though we'd yet to see a doctor ... we both knew that this was the wrong place for us to be, with our premature baby. With nods and words of understanding from the ER staff, we declined any further services, loaded a crying William back in to his infant carrier, and took off for Children's Hospital.
It was 9:30 PM.
We arrived at Children's Hospital just before 10:00 PM. Once again, Charlie dropped me off at the ER, while he parked the car. I ran inside with our distressed baby and was quickly triaged. The nurse put us in a back room and several doctors came in to evaluate William. Unlike the NICU, when x-rays were ordered and a machine drawn up bedside, I had to take my tiny baby in to a large, cold room. I had to undress him from his tiny outfit, remove his diaper, and lay his 5-pound body on a steel table. To this day, the most difficult thing I've ever had to do as a mother, is hold my crying newborn in various positions while multiple x-ray images were taken.
It was torture for William. It was torture for me. The difference is, William doesn't remember the experience. I will never forget it.
After what seemed like an eternity, I was finally able to pick him up and bring his tiny shaking body to my chest. My poor baby was exhausted. It had been hours since he'd slept, hours since he'd eaten, hours since he'd stopped crying. There was nothing I could do, except hold him. I couldn't even comfort him with nursing - because the doctors didn't want him to take in any food until a diagnosis had been made.
At around 12:00 AM, we were returned to a room and reunited with Charlie. While I laid on a bed with William cradled in my arms - Charlie tried unsuccessfully to get comfortable in a chair.
An hour passed.
Another hour passed.
At 3 AM, a doctor returned to our room and told us that all of the x-ray images taken clearly showed that William's intestines were distended. His white blood cell count was elevated and it was highly possible that he was having a relapse of NEC. After having been home for just over two days, our baby boy was being re-admitted to the hospital. Much to our surprise - he was being sent back to the NICU where he had spent the first four weeks of his life. Even though I was told that once a child is discharged from a NICU, they don't go back, they made an exception for our William.
When we walked in to the hospital lobby, at 3:45 AM, we were met by the same night guard that we had seen the night William had his first NEC episode. No questions were asked. Instead, he quickly handed us our visitor badges and quietly whispered "God Bless You."
After all that we'd been through over the past 7 hours ... walking in to the NICU with William in our arms was like coming home. The NICU had received a call from Children's Hospital - and it was the doctors at the NICU that directed the staff at Children's to send him back. As soon as we came through the intermediary room, we were met by at least eight nurses and two doctors.
They were waiting for us.
They scooped a crying William from my arms and placed him on a bed - immediately adjacent to his sister's. Charlie and I both commented later how William instantly went limp. It was as if he knew that this was where he was suppose to be and he was in good hands. We talked with the doctors and nurses about the drama of the evening and our visits to three separate hospitals. I told them how frustrated I was that the person I spoke to told me to go to a local hospital instead of returning to the NICU ... how terribly worried we were that William was having a NEC relapse ... and how incredibly grateful we were that he was back under the competent care of the medical staff in the hospital where he'd been born.
We remained next to William's bed for the next hour. Before leaving, we checked in on Elizabeth and made our way over to see Carolyn. On our way to the low-risk side of the nursery ... every single doctor and nurse stopped what they were doing and came over to give us words of encouragement. We were embraced in tight hugs by staff whose names we didn't even know, but who knew us. Over the past four weeks, these people had become our family and we deeply appreciated them all.
When we returned home at 5:30 AM, once again childless, my mother was awake, waiting for us. I relayed what had happened and how we weren't sure what was wrong. But, I felt an odd sense of relief. Looking back, I never felt like William was ready to be discharged. My excitement to get a baby home, overshadowed the deep concern that he had been so critically ill, just two weeks prior.
William was once again, seriously ill and would have to remain in the NICU. Tests would be run, IV's would be administered, more x-rays would be taken and within a few days, a barium enema would be performed to rule out the possibility of a severe problem with his lower gastrointestinal tract. Several days beyond that, William would receive a second transfusion of his dad's "superblood".
Soon, a diagnosis of c-diff (or, Clostridium Difficile Colitis) would be made. There were questions where William could have picked this bacterial infection up, because such extreme care with hand washing was exercised by the limited number of people who came in to contact with him. The most likely explanation was that the levels of good bacteria were significantly reduced by the high doses of antibiotics he had received during his treatment for NEC. With time, the c-diff population, which is always present in a person's intestines, soared.
But once again - and for several more weeks - all three of our babies would remain in the NICU.
... to be continued ...