Chapter 1: 1:36 AM

The average woman in her twenties reads a pregnancy test that reads “Pregnant” and in an instant, she undergoes an adrenaline rush of mixed feelings and emotions. She either screams or takes a quick trip with her back sliding down the wall as the warmth of tears streams down her face in awe. Her thoughts ramble into a war of its’ own. This woman cannot believe the time has at last come for her to be a mother. There is no hesitation to ring her closest girlfriends to share with them the exciting news. The anticipation of going nine months carrying a child is an overwhelming yet ecstatic feeling. For my mother, Jackie her reaction may have been similar. Yet, who’s to say. I’m not sure what thoughts may have been going through her mind. She was already raising two boys of her own. It is my guess, however, the reality of indulging in the beautiful experience of being a mother to another little one was an ecstatic feeling to embrace. Let the nine months tread off into its own sunset for God to put his paintbrush to work.

My mother did what any other normal mother would do, prepare herself. From maintaining her doctor’s appointments, eating healthy, still working etc. The journey for my mom was more than just expecting to be a mother. It was also about standing firm in prayer, hope, and faith that the arrival of her new bundle of joy was healthy. The advantage that my mother had with this pregnancy is that she worked in the nursery at the local memorial hospital. There she had the open-door opportunity to experience the birth of numerous babies. Some of the babies born were healthy and some not so healthy. She was oh, so happy to be preparing for the birth of her next newborn.

During the nine months of my mother’s pregnancy she underwent several episodes of vomiting, that caused her to lose weight instead of gaining as in a normal pregnancy. She was sent to a hospital in Jacksonville, FL to rule out any complications with the pregnancy. The physician in Jacksonville evaluated her to see what could be causing her to lose weight. After being evaluated my mother was told by the physician everything was normal. The only thing they could see was that she had polyhydramnios (excess amniotic fluid in the amniotic sac; and the baby showed signs of intrauterine growth retardation. According to The Mayo Clinic, “it is a condition in which a baby doesn’t grow to normal weight during pregnancy”. The news of the diagnosis upset my mother. In her eyes, she thought the diagnosis meant that I was going to be born physically or mentally challenged and she wasn’t looking forward to raising a challenged child. Therefore, she returned home and educated herself on the meaning intrauterine growth retardation. Which settled the feelings and emotions of the diagnosis shared about her unborn child. Other than this diagnosis, she was told that everything would be fine. She was placed on terbutaline to prevent premature birth.

A couple of weeks later she began gaining weight and showed all the signs of a normal pregnancy, vomiting, morning sickness, nausea just to name of a few. Family and friends of my mother believed everything was fine. As her pregnancy continued co-workers strongly encouraged her to take care of herself so her baby wouldn’t come out looking like some of the babies they saw coming through the maternity ward. My mother took care of some of these babies who were born with limited physical capabilities.

A month before her due date of July 3rd 1985, she was in the midst of doing puzzles. She started experiencing signs of labor from the pains in her back. Though she played the waiting game. At around 10:30 -11:00 p.m. her older sister Carolyn along with several others took her to the hospital. Carolyn left due to hospital staff informing her that my mother wasn’t going to give birth until about 6:00 a.m. She left her oldest daughter Karen there with my mother for support. The on-call doctor for that night told the nurses to “watch my mother because she was going to do something stupid. She just looks like she would do something stupid”. Laughing at the joke my mother gained the sense she was going to have her baby sooner than 6:00 a.m.

Therefore, she warned her niece Karen. Encouraging her to call her mother to let her know that within an hour she was going to have her baby. In disbelief Karen snapped back by informing her of the current time which was 12:30 am. In hopes to change her mind my mother told Karen that by one something in the morning she was going to have her baby. Still her niece was in disbelief.

My mother decided to watch sumo wrestling to calm her nerves, but not long before she strongly encouraged Karen to call her mother again to let her know to come back to the hospital. She knew she was going to have the baby in a little bit.

Somewhat convinced Karen left to call her mother to let her know that her sister was about to have the baby. While Karen was gone one of my mother’s co-workers who was also her nurse for that night came by to check-in on her. She told the nurse, “baby is going to be here before you know it”. To remain on the same, page the nurse called the other staff members in to check how far my mother was dilated. She still had a good little time to go per the nurse.

The nurse went to check on another patient and my mother did her best to remain calm alone in the room. Thirty minutes passed by and without any pain or notice the baby had arrived and lay on the bed beneath her.

My mother yelled out the nurse’s name in which the nurse only heard the last couple of letters. The shrill sound that came from the nurse’s name being called led the nurse to believe something terrible had happened. When the nurse walked in the room, my mother was holding the baby up. My mother reached over to turn the monitors off, checked for the sex of the baby and announced to the nurse that it was a girl. My mother’s nurse ran out to get the rest of the nursing staff and the doctor.

I was here!!!!!

She held me up and offered me back up to God. My mother’s nurse, a nurse in training, and the on-call doctor came running into the room. The on-call doctor began cursing, being that he told the nurses to watch my mother because he knew she was going to do something stupid.

Karen returned to the room stunned at the fact that I was here as early as I was. Leaving her with no choice but to call her mother to inform her, Aunt Jackie had given birth to me. 
I came into the world at 37 weeks, weighing in at 5lbs 13 oz., 18 inches long and looked healthy according to my mother. Being that she knew that most babies born after 35 weeks had a good opportunity for a healthy outlook she believed things were going to be okay.

The morning of my birth I was taken to the nursery for routine newborn treatments. Unfortunately, for my mother she was unable to enjoy the first moments of being a mother again due to a sudden migraine headache. Its’ severity caused her to toss and turn that night before her scheduled procedure to have her tubal ligation the next morning.

Once the new shift arrived jokes were shared with my mother about her delivery. Upon the procedure to get the tubal ligation, my mother’s blood pressure was up while the migraine was still running its course. The consistent discomfort from her head caused my mother to be unable to relax her body, forcing the anesthesiologist to put her to sleep. After getting the procedure, the doctors began to run tests to determine the cause of the migraine headaches. Instead of going home the routine two days after birth and tubal ligation my mother was kept in the hospital for a week for further testing. While I remained in the nursery since she was unable to tend to me from the continuous headaches.

The doctors put her on various medications to discover the cause. From their observation, they thought my mother had a stroke or a blood vessel had burst but they weren’t certain.

That following Friday June 28, I arrived at my new home. My mother began to take joy in being a new mother again. The pleasure of having me home was going splendidly. Family and friends came over to offer their blessings for my mother’s new bundle of joy. That same day, my Aunt Carolyn came over to visit, she took notice to my ankles and how swollen they were. She thought it was due to the way my legs were positioned at an angle. So, she put thick socks on me to see if it would help the swelling go down.

While over the course of two to three days there was an increase in my weight. The rapid weight gain was not ordinary in newborns. When I came home from the hospital I was 4 pounds 13 ounces. Within a couple of days, I was 6 pounds. My mother informed my Aunt Carolyn about the rapid change in my weight. She thought it was from her breastfeeding me. Being that my mother was a nurse she began to take careful precautions to my weight changes. She weighed me every day to keep an eye on my weight. My ankles and feet started to swell slightly again. The weekend went by without any other known problems.

By that Monday morning my health was weakening. My mother was doing her usual morning activities giving me my morning bath, when she noticed the unexpected. My mother noticed that my body was bloated. During the remainder of my bath time she flipped me over to put lotion on my back when she discovered fluid literally shifting in my back. She knew something was definitely wrong. My mother immediately called the pediatrician’s office and notified them of the changes she noticed.

The nurse whom my mother was sharing the news with was in disbelief therefore she transferred the call over to the pediatrician Dr. Steiner who was on-call for my primary pediatrician at the time. Dr. Steiner knew my mother and immediately came to the phone. He too was disturbed and ordered my mother to bring me into his office at once.

My Aunt Barbara rushed my mother and I to the pediatrician’s office on St. Simon’s Island. Dr. Steiner examined and ran test on me to discover what was the prime cause for the swelling in my feet and the sudden weight gain. Even though he couldn’t give a definite diagnosis until test results came back, Dr. Steiner sat down with my mother and shared with her the devastating news that my heart wasn’t functioning like a normal heart.

My mother kept questioning repeatedly whose heart wasn’t functioning properly because she just knew that I was a normal child. Dr. Steiner proceeded to convince her that it was me whose heart wasn’t functioning normal. The overwhelming news brought Dr. Steiner to tears.

My mother broke the news to the rest of the family. They were stunned yet confused. 
After delivering the news, Dr. Steiner shared with my mother the next steps with moving forward to my treatment. The first step was to send me back to the local hospital in Brunswick for readmission to the Intensive Care Unit (ICU) due to the seriousness of my symptoms. By the time my mother had brought me to the hospital emergency room that same day, it was loaded with support from family, friends, current shift nurses and nurses who had already left for the evening returned.

The time spent in ICU involved an extensive evaluation to see what could be causing fluid to build in my body. The test results came back to reveal that there were no complications with my heart instead there was protein spilling into my urine one of the several signs of kidney disease. I was given several doses of albumin and placed on fluid restrictions. Though due to the upcoming holiday weekend, there was not much treatment that could go forth. Dr. Steiner notified Dr. William Rodrigues who was my primary pediatrician of the results. He proceeded to consult with one of his doctor friends at Duke University.

The entire staff of the local hospital was concerned as well as my family at the severity of the results. This was just the beginning of a long hard battle for my family. They didn’t know what to expect from my test results.

The next morning more results came back to determine the final diagnosis of Nephrotic Syndrome an unexpected condition. Nephrotic Syndrome is the damaging of the kidneys in which the kidneys leak large amounts of protein from the blood into the urine. The news about my disorder was not only shocking, but devastating to my mother. She did not want to believe anything the doctors had to say, but she tried her best to listen. Her insufficient knowledge about Nephrotic Syndrome encouraged her to educate herself on the disorder. She asked Doctor Jones to explain. After he explained in detail what the disorder was, she still was unable to understand how this could have happened when she took good care of herself during the pregnancy. All my mother knew was that she wasn’t prepared for what was to come next.

Still in shock about the news my family asked to see the lab results. As they carefully looked over the paperwork they saw that there was an overabundance of protein that had spilled into my urine. Seeing this result, they were able to connect it to my diagnosis of Nephrotic Syndrome.

Following my diagnosis Dr. Steiner called in several other specialists. From the looks of my condition Dr. Steiner and his specialists transported me to Shand’s Teaching Hospital. This hospital was located in Gainesville, GA which was two hours away from Brunswick, GA. Upon arriving at Shand’s Hospital, I underwent more tests as well as my mother and brothers. As results were coming back the doctors could confirm that Nephrotic Syndrome was the final diagnosis.

What was my family to do from this point on? They were not prepared to have their lives turned upside down. Not to mention a precious little girl was in the process of leaving this world at a slow pace within the next six months according to the doctors. This journey was the beginning of an emotional roller coaster not only for my mother but for the whole family. It was one of those moments where there was no time for the start of bickering or family drama. One of their own was at the face of a life-threatening illness without foreseen steps of whether the need for funeral arrangements to be made. It was going to take constant faith, strength, and prayer to bring about a miracle for me to live. As days came and went, the news got even worse.

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