Hope In A Box


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Hope In A Box
by Christine G. Law
The sharp shrill of the apnea monitor pierced the air for the fifth time in ten minutes. I raced my husband to the nursery and shook our premature infant daughter back to life. Once I was sure she was breathing again, I rushed over to the other side of the room to check her twin brother’s monitor. I held my hand over his back and felt for the reassurance of the steady rise and fall of each tiny breath.
It was Christmas Eve and our twins had been home a whole 7 days. Our four year old was tucked in his bed dreaming of Santa. Santa, however, was busy keeping his baby sister alive instead of hiding the customary presents beneath the decorated tree. The flashing monitor lights blinked with the red and green of the season. I thought how strange it was that these cold, gray boxes could have so much in common with the piece of nature sitting in our living room. They both symbolized life in their own unique way. I began to pray that these lights would continue to blink long after the holiday season had come and gone.
By midnight on Christmas Day, we were rushing our baby girl to ER. Her monitor was going crazy with alarms and it was taking longer to bring her back around with each incident. She was admitted to our local hospital and the staff immediately began to run a series of test. I watched and held her tiny body down while she was poked, prodded, and stuck with, what seemed to me, a multitude of needles. When she cried, I cried. After 3 days and many tests, the doctors still had no clue what was wrong with my baby.
I was scared. Truly scared. I was trying to nurse both babies around the clock, give her what she needed, care for my husband and tend to my 4 year old, all at the same time. Even more insane, was the fact that I was doing all of this at only 5 weeks postpartum and was still recovering from an emergency C-Section.
On the evening of the third day in the hospital, I began to panic. No one knew why my daughter’s health was failing, but failing it was. And fast! She stopped eating, became lethargic, and stopped responding to me. I could tell that she was dehydrating and her alarms were coming every few seconds. My fear quickly turned to frustration and even anger at the hospital staff for doing nothing to help her. It seemed that everyone was busy shaking their heads instead of trying to save her! My anger hit top speed when the head nurse entered the room, sat down, and informed me that she didn’t feel prepared or qualified to care for my premature infant. I had already begun to have doubts about the quality of care in this hospital and she was quickly confirming my worst nightmare. She told me that she had never had much experience with premature babies and that she was swamped with other pediatric and adult patients who needed her time. She could not keep running in every few seconds to answer my daughter’s alarms. I was shocked!!! How could she put other patients ahead of my daughter when it was perfectly clear that she should be top priority!
By the next morning, I had worked myself into quite a stupor and all but attacked the doctor when she made her morning rounds. I demanded my baby be transferred back to the hospital where she had been born, as they had the top rated Neonatal facility in the state. I also shouted out orders for IV fluids to be started immediately. I was surprised by the control I suddenly felt as people began to carry out my orders. I also felt ashamed for not asserting my motherly instincts sooner.
The ambulance arrived a few hours later to transfer LeeAnn to Woman’s Hospital, which was located about 40 minutes away. I was impressed by the amount of people it took to transfer one small baby. There were the two EMS personnel, a Neonatal nurse, and a Respiratory therapist. I thought it strange that it wasn’t the amount of staff needed which intimidated me. Instead, the machinery they brought with them into the room scared me to death. Even though I knew how serious the situation had become, the sight of all of these medical contraptions being hooked up to my baby girl drove home just how very sick she truly was.
She was hooked up to various monitors, had IV fluids flowing through her foot because her veins were too small for the usual arm location, and had an oxygen tube shoved into her nose. Unbidden, the tears came as she was placed into a square metal box with windows. The Neonatal nurse explained that she had to be transferred via this heated incubator because she was no longer able to hold her own body temperature. I watched as all of my hopes and dreams were placed in that box with her. I stroked her tiny hand one more time and then she was whisked away with all of her entourage as my brain scrambled to keep up with this turn of events.
I was allowed to ride in the front of the ambulance so that I would arrive at the hospital with her. Although the driver tried his best to cheer me up, all I could focus on were the wailing screams of the siren. I was mesmerized by the fact that the people moving to the side of the rode were doing so because of my daughter. There was a piece of me in the back of this vehicle and I couldn’t see what was going on. Was she okay? Would she make it? What would I find when the ambulance doors were opened?
Upon arrival at Woman’s Hospital, I was pretty much pushed to the background as the specialist took over. LeeAnn was rushed to NICU and more tests were run. I was given the bonding room and told that she would be there with me shortly as their policy forbid babies already released to re-enter into the nursery. She was wheeled in with all of her tubes and needles and she was placed back into the same type of incubator she had been in at birth just 5 short weeks before. It was as though she had never been home at all. I cried again for the thousandth time that day and wished that my husband could be there to hold my hand. I thought how unfair it was that we had to be separated at such a time. I knew that my other baby needed him, as well as our 4 year old, but in that moment all I could think of was how very much I needed him too.
A nurse entered the room covered from head to toe in scrubs and mask and my heart skipped a few beats as she told me that my baby had the Respiratory Systematic Virus (RSV). I knew this was a killer disease in well babies and worried about how much worse it would be for a premature infant of just 4lbs. My husband came to meet me that night and we were all put in isolation, as the disease was very contagious. Respiratory Therapists came in every 3-4 hours to suction mucus from LeeAnn’s lungs and she remained on oxygen and IV fluids. At 10:00 p.m. that night we received a phone call which made our whole world stand still. We were told that our baby boy was running fever and showing the same symptoms his twin sister had. My husband left and immediately rushed him to a local emergency room. He was diagnosed with the same virus. The Neonatal staff allowed both of our babies to be admitted into the same room and we were now all in isolation together. The only one missing was Matthew, our 4 year old. We prayed that he wouldn’t get sick too.
LeeAnn began to show vast improvement within just 2 days and would soon be able to return home. Taylor’s symptoms, however, continued to get worse. His alarms were continuously sounding and he was not responding to the respiratory therapy. His oxygen levels were dropping and it was taking all of my effort to keep him breathing on his own. I quickly became a NICU nurse as I was alone in that bonding room with two very sick infants and the nearest nurse was several feet away behind the walls of the NICU nursery. I thought I was handling things pretty well until Taylor coded. His alarms started screaming and suddenly I couldn’t bring him around. I shook him and shouted his name. No response. The alarm blasted through the room drowning out all thought, except the one shocking my brain into pulling the Code Blue switch. The warning sounded through all of the hospital’s P.A. systems and within a matter of minutes, the room was filled with doctors, nurses, and respiratory therapists. They shoved me aside and surrounded my son’s crib. I couldn’t see a thing. I tried to peek over their shoulders to see if he was breathing, but it was hopeless. I sat on the bed and cried hysterically for the first time since this nightmare had begun.
Once the real tears started, all feeling poured out of me uncontrollably. I was alone and afraid. More afraid than I had ever been. What if he died? What if I had done something wrong or hadn’t done anything at all when I should have? A pair of strong arms wrapped around me and held me tight as I cried and cried and cried some more. I looked up to find that it was the doctor himself that was holding me. He smiled down at me and assured me that my little boy was breathing again.
When he gauged that I was calm enough, he informed me that Taylor would have to be transported to another hospital because he was no longer able to hold his oxygen levels and the virus was weakening his respiratory system. He told me that my baby would be put on a breathing tube for the ride and that he may have to be on a respirator. He would also need a blood transfusion because he was still highly jaundiced from birth. His body was so busy fighting the high biliruben level that it couldn’t adequately fight the virus.
For, what seemed the hundredth time in the past 5 days, I panicked. All I could think was, "Here we go again!" And that this time there was no guarantee for a positive outcome as LeeAnn had been given a few days earlier. Once more, the metal box with windows was wheeled in. This time I was asked to leave the room as they fitted Taylor with the breathing tube. I stood in the corridor frozen with pain. Once again, I was alone. My husband had gone home to care for our 4 year old and hadn’t made it back yet. I kept thinking about how shocked he would be when he did return. As though he had read my mind, he was suddenly at my side, having made it back just in time to see our premature son rolled out in his metal box. My husband commented on how our hopes and dreams had a habit of being boxed up at the most unexpected moments. I choked back yet another bout of tears as I gazed through the box windows at my tiny son with all of his tubes. He looked so much more fragile than his sister had. He had several more contraptions attached to him. His eyes were closed and I wondered if they’d ever open again. Once more, I was allowed to ride in the ambulance with the driver. Again, I traveled without my husband because one of us had to stay with LeeAnn as she had not been released yet. This time the driver had no cheerful words for me. He concentrated on getting my son to the other facility as fast as possible. We both knew that every scream of the siren could mean his last breath. All I could do was pray. I felt so totally out of control.
I realized just how far out of control I really was upon arrival at Our Lady of the Lake Regional Medical Center. I was ushered towards the admissions desk to complete the paperwork as my son was taken from me and rushed to the PICU Center. To make matters worse, I was told that he had stopped breathing twice during our short road trip. I couldn’t rush the admissions clerk fast enough. In the back of my mind, I knew that this meant life support or at least the ventilator. I knew it was his best chance, but I hated it. I was afraid that once a machine took his breaths for him, he would never breath on his own again.
I walked in on the doctor placing the ventilator tube down his throat. I heard a shrilling scream and only dimly recognized it as my own voice. I was immediately rushed out by a worried nurse and fought against her restraining arms. The doctor noticed and came over to once again take me in his arms and reassure me. It meant so much that he had taken over my son’s case himself instead of turning it over to one of their staff doctors. He allowed me to see my son and even let me touch him, although it was it was discouraged due to the heavy sedatives he had been given. Taylor lay there with his eyes closed and the machine breathing for him. He was so pale and so still. All sound vanished except for the hum and hiss of the respirator. He looked like a little doll, but I knew that there was life inside of him and I was determined to keep it there.
I spent hours at his bedside, leaving only long enough to run over to the other hospital to nurse my daughter. I continued to express milk and store it for him for when he recovered. It was the only thing I could do for him. I stroked him and sang to him so that he would know that his mommy was still with him. I remember thinking how unfair it was that he was struggling so much in this new world when, in reality, he wasn’t even supposed to be born yet. It definitely had been the WEEK FROM HELL!
We had our son baptized the night he was transported and had everyone in the community praying for him. It took a long 2 weeks, but he did recover. I couldn’t wait to get BOTH of my babies home and begin a normal life. On January 7, we finally were a complete family. We were all settled in with both apnea monitors blinking their greetings once more. My husband and I stood at the door of the new nursery, arm in arm, and wished each other a Happy New Year as we once again unboxed our hopes and dreams for the future.

Read Taylor and LeAnn's Birth Story