Mackenzie's Story   — Denise Marrone, NY, USA

Mackenzie's Story I was very excited to learn that I was pregnant on March 1, 2000. This was my first pregnancy, and my husband had 2 sons from a previous relationship who lived with us. We, of course, were hoping for a girl, and I had a feeling that was what I was carrying. That was confirmed at my June 3rd ultrasound. The technician was 90% sure she was a she. Because she was kicking her legs around, she could not be 100% sure, but we were given the 100% ruling in a few later ultrasounds. She was given the name Mackenzie Nicole, and her due date was October 30, 2000. I could not wait to meet her. I was taken out of work 5 weeks before my due date due to severe swelling and high blood pressure. On Friday, October 13th, my OB/GYN admitted me to the hospital following a routine visit due to my blood pressure. His plan was to induce labor if my BP did not go down. It did end up going down, and I was discharged with several appointments for the following week for non-stress tests. I was being monitored for pre-eclampsia. On one of those appointments, I inquired about having a GBS test, as it was mentioned in our childbirth class. My OB/GYN told me that he had given it to me, and I had tested negative. I went into labor on Friday, October 20, 2000, and Mackenzie was born at 10:58am, weighing 6#9.25oz, and measuring 19.25". She had a perfect angel face with chubby cheeks and a head full of dark, spikey hair. We spent the next 2 days in the hospital getting to know each other, and I was trying to get the hang of nursing. Our pediatrician was concerned that her billirubin levels were higher than he would like, but he discharged us on Sunday with orders to visit a lab on Monday and have her levels checked again. We did this, and they were up even higher, so he admitted her back to the nursery for phototherapy. I was able to stay in a parent room behind the nursery, thank God. She stayed under the billilights for the next 4 days, and we were discharged on Thursday. During this hospitalization, I would go into her private room every 2-3 hours to nurse her, and I noticed that something was not right. It would take her about an hour and a half just to latch on, and when she did, she didn't eat much. I brought this to the attention of the nursing staff, and they just equipped me with a pump so I could keep my milk supply up. Only later did I learn that a conversation was overheard where the staff were commenting that there was something wrong with my baby, yet nothing was done to find out what. I was very glad to finally be home with my baby, and the next few days seemed to go wonderfully. However, that would all change very quickly. On Saturday, October 28th, I felt that Mackenzie was not acting right. She was in a state of semi-consciousness all day, and she seemed fussy. She was not really crying, more like moaning. She would not eat, and this really concerned me. My parents and a few friends had stopped by to visit. I expressed my concerns to my mother, who responded by saying that she was just being fussy. After all, she did not have a fever (at that point). I even relayed my concerns to the lactation consultant from the hospital when she called to follow up with me. She recommended "Kangaroo Care" (skin to skin therapy), and said that she may just have a belly ache. Even though my gut was telling me otherwise, I tried out this form of therapy. I fell asleep with Mackenzie on my chest, and we slept that way through the night. When I woke up in the morning, my daughter's little body was hot. I took her temperature, and it was 102.5. I called my mother, then the pediatrician, and I left a message with the answering service. The doctor on call, Dr. Blum, called me from the hospital, and I gave her Mackenzie's symptoms. At this point, her temperature had dropped to near-normal, but Dr. Blum wanted me to bring her to the ER anyway due to her being lethargic and having no appetite. After an argument with my husband over the car (to this day this still angers me, even though we are divorced; we only had one car, mine, because he drove a van for work and had let his sister borrow his car, and he wanted to take the car so that his son could play in a pop-warner football game, even though the kid had missed most of the games that season. Luckily I stood up for myself and took the car anyway...thank God for maternal instincts), I left for the hospital. I had ironically packed a bag for myself, after having to be in the hospital for her jaundice, I guess I just wanted to be prepared. When we got to the ER, Dr. Blum met us and brought Mackenzie right in. Her temp was still down, and she debated admitting her. She finally chose to do so, as she was really uncomfortable with the fact that she had spiked a temp in the first place. We settled into a room on the peds floor, and many tests were ordered. One of the tests was a lumbar puncture, and because of my background in Psychology-Child Life Specialist, I wanted to go in for that procedure and keep my baby as calm as possible. Dr. Blum refused to let me in, saying that she just had a baby not too long ago, and if I lost it in there, she would too. I used this time to run to the car and get my bag, as I knew we weren't going anywhere anytime soon. After the LP, Mackenzie was catheterized and hooked up to several leads monitoring her heart function and oxygen saturation. She was also started on 3 different antibiotics, as her spinal fluid came out cloudy. The word "meningitis" was mentioned, but not confirmed at that point. Shift change brought a new pediatrician, Dr. Eadline. He took over right where Dr. Blum left off, and he was the one who confirmed a diagnosis of meningitis. I desperately attempted to get ahold of my husband, who I later found out had taken a taxi to the football game. I was the only one with a cell phone, so I had to leave a message with his parents and hope that he contacted them soon. Dr. Eadline let me know that he was talking to physicians at University Hospital in Syracuse, NY, which was a bigger hospital about an hour away. He felt that their facility was better equipped to care for Mackenzie in her condition, as they have a Pediatric Intensive Care Unit. The collaborative decision was made to transport Mackenzie to Syracuse, and they sent a medical team in an ambulance to Utica to pick up my baby. That whole time, I sat in a rocking chair with my baby, holding her, singing to her, talking to her, while she was hooked up to several tubes and wires. My grandparents had come up from Florida to meet their first great-grandchild, and they arrived at the hospital with my aunt and uncle to a horrific scene. The team from University essentially ripped my daughter from my arms, disconnected everything, and hooked her back up to their own equipment. My husband arrived somewhere during this time, as well. I asked to ride with her in the ambulance, and I was told that it was too full (from what I have read, this is a common occurence). They told us that if anything were to happen, they would pull over on the side of the road. The entire drive out to the hospital, I looked for an ambulance pulled over on the side of the road through my tear-filled eyes. I have never been so scared in all my life. When we arrived at the hospital, my parents were walking in the door at the same time we were. We all went up to the PICU to find my daughter on an isolette, still hooked up to countless wires and tubes, under a warmer. I found out that she had had a seizure on the way to the hospital. I kissed her and told her that I was there and that I loved her more than anything. The doctor took all 4 of us into a conference room to discuss the situation. He told us that it was bacterial meningitis, but he wouldn't know what strain (Group B Strep or Meningococcal) for a day or so, so they were treating her for everything. He said her prognosis was brain damage, mental retardation, cerebral palsy, hearing and/or vision loss, developmental delays, or death. The latter I had apparently blocked from my mind, because my mother reminded me of this a few days ago. I didn't understand why God would give me this precious gift to take her away from me after 9 days. The next few days were very difficult. We learned that she had been infected with Group B Streptococcus bacteria, which my parents went home and immediately researched. After 3 days, she was responding very well to the antibiotics, and it was decided that she could be moved to the regular pediatric unit. Before leaving the PICU, she had a CT scan, which showed "spotty" areas on her brain. They said that it could be attributed to all of the fluid on her brain, and that the test would be repeated after the swelling went down. We endured 7 more days in the hospital, during which time our nursing routine was reestablished. Her father and I stayed at the nearby Ronald McDonald House, which we were very greatful to have access to. We had countless family members and friends come to visit and support us, and this was the best medicine for 2 very tired, scared parents. We bought some stuffed animals and My First Dolly in the giftshop and lined her crib with them. While on the peds floor, she had a PICC line inserted to administer her antibiotics and draw blood, as she had been poked so many times that most of her veins had collapsed. I was allowed into the treatment room for this procedure, and I did my best to comfort my baby, who was feeling better enough to be a bit combative. A few days before discharge, Mackenzie was taken in for an MRI and hearing test under sedation. The MRI showed "several spotty areas of brain damage", and they couldn't give us an answer as to what effect this would have on her. They told us that her hearing was normal, aside from some muffling due to fluid on her ear which would clear up on its own. They sent us home on Wednesday, November 8, 2000, and wanted to see her back in 2 months for a follow up hearing and vision test. We were so glad to have her home. Her pediatrician told us that we would have to watch her for the first year to be sure she was reaching her developmental milestones. This would be my main job, as this is what I went to school for. We had Early Intervention services coming in to conduct regular evaluations; Mackenzie would pass these with flying colors! In January of 2001, we took her back out to University Hospital for the follow up testing. For the hearing test, I held her while her father held very large, adult-sized earphones over her tiny ears. This test was called a BAER, and while her vision test came back saying that everything was fine, this test came back with completely opposite results. They told us our baby was completely deaf. This was devastating news. I spent the next few months in what some called denial, insisting that my baby was responding to sound. I was told that it may be the vibrations that she was responding to, and that the babbling that she was doing was instinctive, but would cease after another month. I held on to every little sound her voice made. I stimulated her with interactive toys and my voice and movements, as well as classical music played softly while she slept. She continued to pass every EI evaluation. She had another hearing screening at a local audiologist's office in March 2001. The results showed a moderate loss in both ears, her left being more impaired than her right, but were mainly inconclusive because she awakened through most of the testing, which required her to be asleep. In May of 2001, Mackenzie was tested under sedation at Albany Medical Center. I was in the room with her, but not holding her (which I found out would impair the test, as it would pick up my muscle movements). When the test was done, the technician gave me the results immediately, and my thoughts were confirmed: her hearing was normal on all aspects. I was overjoyed, and luckily my father was working near there, so he was able to be with us and share in the wonderful news. Mackenzie was the only one who was not happy, as she was groggy and upset as she woke from the sedation! Today Mackenzie is a healthy 6 1/2 year old who carries no lasting effects from her early life ordeal. She has a few scars on her chest and neck from her PICC line, but they are tiny, faint, and blend right in to her far skin. She has light brown hair, big blue eyes with the LONGEST eyelashes anyone has ever seen, and a few freckles scattered on her nose and cheeks. She loves school, is performing above average, and will be moving on to the second grade in the fall of 2007. She enjoys reading, swimming, and being outdoors. She loves High School Musical (can't wait for #2), Hannah Montana, Kelly Clarkson, and all kinds of music, which she sings very well. She is active in dance, and will receive her 5 Year Trophy at next year's recital, and she recently gave up gymnastics to join the pop-warner cheerleading squad. She will make her First Communion in May of 2008 and serve as Flowergirl when her Aunt Sarah gets married August 25, 2007. She added Big Sister to her repetiore on January 19, 2007, when we welcomed her brother Tristan Joseph to our family. He was born healthy, thank God, and came home from the hospital lucky enough to stay home (no extra hospitalizations for him). I had a great group of doctors that decided to treat me with antibiotics when Tristan was born, even though I tested negative for GBS. I found out after bringing Mackenzie home from the hospital that my previous OB/GYN had performed my GBS test which he told me was negative at my VERY FIRST appointment, at which time I was only 8 weeks pregnant. Another was NOT done at the appropriate time, 35-37 weeks. My prayer to God was that Mackenzie pull through with no complications, only a story to tell her friends when she was older about how she was very sick as a baby but made it through alright. That is what happened, and I feel eternally greatful to be blessed with this wonderful Earth Bound Angel. I now educate all expectant mother in my life on the importance of having their GBS test done at 35-37 weeks. Thank you for reading our story. This is the first time I have actually put it down on paper, though I have told it numerous times. Anyone wishing can feel free to contact me at Mommipooh@aol.com.