… from the beginning

On August 9, 2003 Elizabeth Mackenzie Forester was born at 23 weeks into my pregnancy weighing just 1 pound 3 ounces and measuring a tiny 7 inches in length. I was only able to see Elizabeth for a split second before they rushed her off to the Neonatal Intensive Care Unit. The only thing I remember about her that day was that I had not heard her cry. I kept asking why is she not crying and the nurse took my hand and said because she is too tiny to cry, too tiny to breathe and too tiny to live. The doctors gave Elizabeth less than a 10% chance of survival and began to prepare me for the likely hood that Elizabeth would not make it through the night. Since I was recovering from a cesarean section I was unable to see Elizabeth until the next morning. This was the hardest night of my life. I remember the nurses brought me a Polaroid picture of Elizabeth and I held that picture all night crying and looking at what should have been my perfect little girl. The nurses visited the NICU every hour to check on her and update me on how she was. Each time they came back to the room the answer was the same. She is fully ventilated on life support with the machines keeping her alive. Morning could not come soon enough. When I saw the morning sun begin to make its way into the hot summer sky I called the NICU and they told me she had made it through the night. It was at this moment I knew that Elizabeth was a fighter and had a will to live. The doctors wanted to believe this as well but realistically speaking it would take a modern day miracle for Elizabeth to survive this incredible adventure I had embraced as “Life with Elizabeth”

Outside the NICU was a sink to wash your hands and a phone on the wall. My nurse picked up the phone and said Pam Forester to see bed 5. I had decided on a name weeks before so I did not understand why she was being referred to as bed 5. I was wheeled in where I was draped with a gown and met by another nurse who asked if she could speak with me for a few minutes. She began to tell me about the NICU. We were in the critical care ward and that they keep the room very dark and quiet for the babies are not able to handle the lights and sounds of their environment yet. She began to tell me that Elizabeth was very small, one of the smallest they had ever seen in the NICU. As she explained to me Elizabeth’s condition I prepared myself for the very worse. The nurse took my hand and wheeled me to a tiny bed with the number 5 above it. As I stood to see Elizabeth for the first time I realized I had not prepared myself enough. Wrapped in saran wrap, tiny tubes coming from every part of her body, the ventilator taking a breath in, a breath out, and a tiny diaper that had to be folded over several time to fit her body lay my Elizabeth.  I could feel the sting coming from the tears in my eyes. I wanted to be brave and strong but knew that no one in this situation could ever be. I let the tears fall and wondered how I was ever going to make it through this. The one thing I did know was that this baby had a name and so I asked the nurse for a pen and I marked through Baby Girl Bed 5 and wrote Elizabeth Mackenzie Forester. This tiny, helpless baby was going to be given her name that I had spent so much time planning.

The first week was the hardest for me. I had become septic and was not allowed to visit Elizabeth. At the time we did not realize how sick I really was but later found out that I had less than a 25% chance of making it through this terrible infection that had invaded my body. Elizabeth had also developed sepsis and became very ill. The doctors did not even know if the machines could continue to breathe for her. The nurses kept a steady schedule of visits keeping me updated on everything that Elizabeth was going through. With each new morning I felt like I was that much closer to knowing Elizabeth was going to make it through this. When it came time for me to be released I was overwhelmed with the fact that I was leaving the hospital without Elizabeth. I lived in Fayetteville, a long 3 hour drive one way to Little Rock. I had Nathan who was starting second grade in a few weeks and knew that I needed to be home with him but I just could not leave Elizabeth, not yet. A social worker came to my room the morning I was released and told me they were able to reserve a room for me at the UAMS Family and Friends Home. This was a facility across the street from UAMS that parents of preemies who did not live in Little Rock were able to stay while their babies were in the NICU. I went to the NICU that morning before going over and getting settled. Not much had changed with Elizabeth. I had made a pink card to cover up the scratched out bed # 5 that read “My name is Elizabeth” and the nurses and doctors respected my wishes and began to call her by Elizabeth rather than bed 5 or baby girl Forester. Every time I saw Elizabeth I cried. I tried hard to keep the tears from coming but they somehow managed to fall. It had been over a week since Elizabeth had been born. I still had not been able to even touch her tiny little hands. I sat in a nurses’ chair as close to her bed as I could get. I asked the nurses a lot of questions about which tube was doing what and what all the different machines were doing for Elizabeth. Since I was not allowed to touch or hold or even speak to Elizabeth I focused on the machines. I would end up studying physicians’ journals and medical books from the library so I would know how everything was working together. When the nurse came to pick me up to take me to the Family and Friends Home I walked away scared to death and with no real plan of how I was going to continue my life.

The first few weeks were a blur. My mom stayed with me until I finally begged her to leave. I remember her telling my dad that I was so angry and all I wanted to do was sleep. I felt like Elizabeth being born too soon was my fault. That maybe had I done something different during my pregnancy then Elizabeth would still be inside me waiting to be born on her due date. The reality of this was that I had done everything right. I had not been home in over a month and the nurses were beginning to wish that I would disappear for a few days. Every morning I would set my alarm to be at the hospital for the start of visiting hours. There was a small 2 hour window that you could visit the NICU before the doctors made rounds and then you could come back in the afternoons until dinner and back again after 7pm until 6am when the staff changed from night to day shift. I would throw on my favorite jeans and a ball cap and walk to the NICU, wash my hands at the sink, pick up the phone and say “This is Pam to see Elizabeth” I was always the only parent in the NICU first thing in the morning. I had my favorite nurses and then my not so favorite but stood my ground when they would suggest that I should go and get some sleep. I would always ask for the report of the nurse who had Elizabeth the night before but before long was just reading the charts myself. I always checked weight gain first. This seemed to be my main focus – mainly because I really had no idea just how sick Elizabeth was. It would not take me long to figure it out. Every morning was the same. The respiratory therapists would come in and prick Elizabeth in the hand and in the foot for blood gases. This was something they would do 1000 times before Elizabeth would leave the hospital. Today you can see and feel the hundreds of tiny scars on her hands and feet from the many times they pricked her over and over and over. Caroline – born one year after Elizabeth – touches Elizabeth’s tiny hands and says, “Mommy, why does Elizabeth have these owies all over her hands? She needs a bandaid.” I would always introduce myself to someone new. “Hi, I’m Pam and this is Elizabeth.” It became so important to me that the staff know who Elizabeth was. I always asked for a report on the blood gases. I had learned that if the numbers were good then we could lower the ventilator to more room air and that meant Elizabeth was beginning to breathe more on her own. It was such a roller coaster. The machine would come down, and an hour later back up. The therapist would say – oh this is very normal behavior for a preemie. I had decided there was nothing normal about this behavior.

After my morning visiting hours I would walk back to the house and shower and dress for the day. I had always worn Romance perfume and made sure that every morning I would spray my wrists so that Elizabeth would begin to recognize my scent since I still could not touch or speak to her. I spent a lot of time in the library during down time from visiting hours and would be the first one back in the NICU once the doctors finished their rounds. Some would stick around and visit with me and try to lift my spirits with good news. Some days I appreciated it, others – when I had spent too much time reading medical journals I would wish they would just leave me alone and let me sit and watch the machines.  For dinner break I would allow myself to go to Jason’s Deli and have soup and salad. The first few times I ended up leaving my dinner on the table. Families would come in for dinner and I would feel that sting behind my eyes that I had become so familiar with. I longed to be the family I had dreamed of. Babies would come in carriers and people would stop and ooh and ahh over the babies and compliment the parents on how beautiful the child was. I wanted to stand up and say I have a new baby, she is beautiful and perfect. Time would heal those feelings and it did. One night after dinner I had made my way back to Elizabeth’s bed and found we had a new nurse. She was young and very pretty. She came up to me and said my name is Liz and I will be taking care of Elizabeth tonight. Liz was short for Elizabeth and I felt an instant bond with her. Liz worked several nights a week and she and I would talk for hours. Not just about Elizabeth, but about her boyfriends and her family. It was so nice to have a conversation about something other than medicine.  Nights were always the hardest to get through. You always expected something to happen in the middle of the night. To avoid going back to the house and wait for that phone call I would sit with Elizabeth until 3 or 4 in the morning. I tried to read but ended up watching the monitors. Elizabeth would forget to breathe and the machines would sound an alarm and the nurses would come over, lift the saran wrap, tap Elizabeth on the bottom of the foot and remind her that she had to take a breath in. After weeks of watching the nurses do this I asked if I could be the one to tap her foot when she needed a reminder to breathe. They were more than happy to allow me to help. This would be my first time to ever touch Elizabeth and the truth is I just wanted an excuse to have my moment of touching my baby, even if it was just a tap on the foot. The feeling was so overwhelming that I had to walk away to collect myself from falling apart.

Tubes began to disappear only to be followed by a few new ones. Elizabeth was just a little over a month old and was beginning to show signs of growth. I remember walking in one morning and the nurses were so excited to see me. They met me at the door and told me that Elizabeth had a surprise for me. I walked over to her bed to find that the saran wrap had been removed and Elizabeth had been repositioned from her back to her stomach. I asked if I could touch her and they told me I could lay my hand on her stomach. When I did I said good morning, Elizabeth and with a tiny struggle opened 2 of the most beautiful blue eyes I had ever seen. When Elizabeth was born her eyes were still sealed closed. I had yet to see her with her eyes open. I did not even try to hold back the tears this time. I held my hand on her stomach for the longest time and let her watch me cry as I said her name over and over again. It was a milestone like no other and finally a shimmer of hope that we were going to be okay.  I allowed myself to go home when Elizabeth was 6 weeks old. The doctors and nurses met with me and assured me that Elizabeth was doing well and that I needed a break. I could not pack fast enough! I drove the 3 hour trip home and called the NICU every hour to check on Elizabeth. I had only planned to stay 1 night but with each call to the NICU I convinced myself to stay a few extra nights. Nathan was so happy to see me!! When I made it back to Little Rock at the end of the week things had taken a turn for the worse. Again I was greeted with the word “normal.” Elizabeth was in need of a blood transfusion and there were no veins left except for in her tiny little head. When I walked in so ready to see those beautiful blue eyes all I could see was the IV coming out of her head with the blood going into the tubes. One blood transfusion was followed by 23 more. Her blood gasses were off and the ventilator had to be turned back up. There was talk of Prematurity Retinopathy. Babies who are on the vent for long periods of time can lose their eye sight. A specialist came over from Arkansas Children’s Hospital and began to monitor Elizabeth closely. Everyday her eyes were checked and we were beginning to get closer and closer to Elizabeth having to be transferred to Children’s for surgery. Things from here started to go down hill quickly. The guilt of leaving Elizabeth was taking its toll on me as well. Due to the threat of eye surgery, the respiratory therapist took extreme measures to get Elizabeth off the vents. I had left for dinner and was told they would call if anything changed. No call meant good news. But when I arrived back at the NICU the curtains had been draped across the door and parents and visitors were standing outside in the hall ways. This is not something you see unless a baby has passed away or is in danger of doing so. I knew it was Elizabeth. I picked up the phone and Liz told me she would be out to talk to me in a few minutes. When the door opened I was met by Dr. Hall and Liz who took me into the parents visiting room and shut the door. While I was gone they had attempted to extubate Elizabeth to see if she could breathe on her own. She did very well for a few minutes but then dropped her heart rate to extreme danger and they had to re-intubate and perform CPR and administer epi to get her heart beating and back up again. Dr. Hall told me to call my family and have them come to the hospital immediately that there was a good chance that Elizabeth would not be able to recover from this. They were over 3 hours away, it was the middle of the night and Nathan had school in the morning. It was not as easy as it sounded to call my family and have them rush to the hospital. I did not even know if Elizabeth would still be alive once they got there. I was allowed back in the NICU after calling and sat with Elizabeth begging for her life. I could not believe that we had come this far and were going to now lose her. I remember looking at Dr. Hall and asking if I was watching my daughter die. He said no, but I did not believe him and I don’t think he believed it either. By the time my family arrived we could already see improvement in Elizabeth. The bad news was that we would have to try to extubate her again tomorrow. Everyone stayed that week with me not knowing if Elizabeth could handle another night like this one. But by the end of the week Elizabeth had been extubated and was breathing with just the help of a cpap machine.

This was the beginning for Elizabeth. She began to show signs of true progress. Her eyes had reversed themselves literally hours before she was scheduled to be transported for surgery. She was eating more, gaining weight by the day and for the first time I had been able to actually hold her in my arms. Elizabeth was 2 months old the first day I held her. The nurses kept taking pictures of me holding her and would say look at the camera and smile but I could not take my eyes off of Elizabeth. Elizabeth graduated from the critical care NICU to the intensive care NICU and had been given what we called a “condo” to stay in. Her incubator was perfect for her. I was able to touch her and hold her through the arm holes. I could sit as close to her as I wanted. I decorated her little house with pink signs of milestones that we were meeting daily. I was going home more often and with ease because I knew that Elizabeth was beating all odds. I began to prepare her room and allowed myself to shop for her and plan her homecoming.  The cpap tube had been removed from her throat and Elizabeth was breathing with just the help of a nasal canula. The speech therapists were making daily visits preparing Elizabeth for the bottle so we could remove the feeding tube that we had been feeding her through her mouth. At 36 weeks I knew that babies developed the suck, swallow breathe reflux and at 7:30 that morning I bound into the NICU ready to try Elizabeth out on the bottle. Everyone was skeptical thinking Elizabeth was just not ready to try this but I convinced Dr. Hall and he gave the go ahead. She did great!! We had to take baby steps for feeding but within a week she was taking all feeds by bottle and the feeding tube was removed. Elizabeth now had every tube removed and was only using the nasal canulas for breathing. She looked like a real baby – well a preemie real baby anyway! I knew it was just around the corner until I could bring Elizabeth home. I was allowed to hold her anytime I wanted and the nurses began showing me how to give Elizabeth her medications and bathe her and remind her to breathe. Even though I had been through the newborn stage with Nathan, things were going to be very different for Elizabeth.

Dr. Hall stopped by Elizabeth’s bed one morning and sat down next to me.  He asked if I was ready to have Elizabeth moved to the special care NICU and I think I finally cried tears of joy rather than sadness for the first time in over 3 months. I knew that once in the Special Care NICU that we were just days from going home. Elizabeth would be placed in an open bed and we would begin to try to wean her from the oxygen. She would have to prove to us that she could maintain her own body temperature, continue to gain weight and have one last head scan and then we could take her home. Elizabeth proved that she was up for the challenge. She did great in an open bed. She loved the attention that the nurses were giving her and the speech therapist said that her feedings were like that of a full term newborn. The nurses told me to go home, buy a car seat and come back in 2 days. I would spend 2 nights “rooming in” with Elizabeth and once I passed CPR classes I could take her home. I kissed Elizabeth good-bye and drove home as fast as I could to tell my family the good news.  I had spent the entire day shopping, finishing the nursery and calling all of our family and friends to tell them that Elizabeth was coming home. When the phone rang I was not prepared for what happened next. I had moved on from the expectation of a late night phone call telling me that I needed to drive to Little Rock for something was terribly wrong with Elizabeth. I had not allowed myself to think that I could have yet another set back. When I answered the phone I was introduced to a young voice telling me that she was Elizabeth’s doctor. UAMS is a teaching hospital and we had met many residents and interns in rotation. The young sweet voice on the other end was a resident who had just taken over Elizabeth’s case. These were her exact words –

“Ms. Forester, I am afraid I have some very bad news. We just performed Elizabeth’s head scan and have found that Elizabeth is suffering from Periventricular Leukomalacia and will be diagnosed with Cerebral Palsy and as mentally retarded and will never walk, talk or live a normal life. Do you have any questions?” Did I have any questions? The first was – who are you again?
I asked her to hold while called my dad from the other line. Once telling him of the findings I had had just enough time to get very angry and proceeded to tell the resident that you do NOT have these types of conversations by phone and that medical school had obviously not taught her anything regarding bed side manners because hers were awful. I hung up from the resident and begged my dad to tell me everything. I was sorry I had asked for the truth once he was finished. Once again on the journey I was so ready to end was the word “normal.” First of all, if I could not pronounce the word, it was not normal and second – well there was still the fact I could not pronounce it let alone try to determine if it was normal. Preemies are very susceptible to brain bleeds. Elizabeth had had several bed side head scans during her stay in the NICU but the damage was just now being seen. Elizabeth had suffered not one, not two but four grade 4 brain bleeds. A grade 5 has been determined to be the worse type of brain bleed. There is absolutely nothing you can do once a brain bleed has been discovered because the damage has already taken place. You just wait to see if the part of the brain that has not been affected will compensate for the damaged areas. I wanted to leave that night for Little Rock but my family said no. Elizabeth was not in any danger and she was the same as when I had left her the day before. It was unfortunate that we had been told this way. The next morning after arriving in Little Rock I requested a meeting with Dr. Hall who took the time to show me the films and explain what we could expect. I had heard all of these things before and look at how well Elizabeth had come through it. I was not about to let this bring me back down again. I spent the next 48 hours with Elizabeth thrilled to finally have her all to myself. No doctors, no nurses watching me and telling me what to do. I passed the rooming in with flying colors and after spending 4 months in the hospital, I was finally taking my baby girl home.
I had to take Elizabeth home still dependent on oxygen and with lots of monitors. The 3 hour car ride home felt like it took days. I sat in the back seat with Elizabeth, my hand on her chest counting each breath and watching the monitors I had become oh so very familiar with. We had to stop 2 different times to feed her. Elizabeth was on a feeding schedule of 1 4oz bottle every hour. When we arrived home my family and friends were at the house that looked more like a medical center than our home. There was oxygen tubing leading into every room of the house along with a make shift pharmacy that had been set up in our kitchen. I had folders and how to books everywhere on how to care for a preemie once they are home. I had appointments already set up for home health care since we could not take Elizabeth out due to the risk of RSV and other illnesses. I learned that a simple cold could send Elizabeth right back to Children’s so everyone was asked to use alcohol foam before entering the house and Nathan was stripped down after school and scrubbed from head to toe before he could be in the same room with Elizabeth. I had already made appointments for physical, occupational and speech therapy evaluations even before Elizabeth was home. I was going to give her every opportunity to have the best life she could have despite her diagnosis. 

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