Expectant parents should never have to consult a Pediatric Surgeon on behalf of their unborn baby. In 1997, my husband and I had to do just that. We came to know the “look of pity” as we sat in the waiting room. It would become a familiar part of our lives. The pity in everyone’s eyes became a common sight, yet it came without words most of the time. There were no words that could have consoled us nor relieved us of the worry. Worry moved into our lives. It brought fear, the unknown and heartache along with it. Unwelcome visitors yet permanent, or so it seemed.
I hadn’t realized that I was pregnant until nearly the second month because I was on birth control pills. During the hot September of 1996, it hit me. After confirming that I was pregnant, I kept it a secret. My husband’s 36th birthday was in a few days, and I wanted to surprise him. Boy was he surprised! Our daughter Sydni was nearly 8 at the time and we had never thought seriously about having another child. We had enjoyed all the years of being "just the three of us". The three of us were now excited at having a new addition to the family. We began the usual wondering, would it be a boy or girl? What would we name him or her?
Unlike my pregnancy with Sydni, this one was difficult from the start. I had morning sickness nearly all day. Smells created havoc for me as did certain voices. The longtime radio host I had enjoyed became a quick enemy. His voice would actually make me sick. To this day I am unable to listen to him. The morning sickness would last nearly five months. No sooner had the morning sickness gone away, I got the flu. By the time I was completely well I was nearly six months pregnant.
In January 1997 we found out that again we would be having a baby girl. To say that I was excited would be an understatement. Sydni had been such a complete joy to us; the thought of a second precious girl was wonderful news. I was now on a mission to create the most adorable baby girl nursery that had ever been. My best friend Dawn and I spent days shopping for just the right items. Custom made bedding was ordered complete with pink satin bows. I searched for the most beautiful things I could find. Sydni was a big help too. She wanted to select things for her new sister’s nursery, and she did so with pride. Carl and I wanted everything just right. This would more than likely be our last pregnancy, and nothing was too good for the little girl we were yet to meet. We decided after weeks of debate that she would be named Lyla Gabryale, after Carl’s Grandmother. The three of us counted the days until Miss Gabby as we would call her would arrive.
On March 30th, I became aware that Gabby hadn’t been moving around much. My pregnancy until this point had been very active. I would even joke that she must have a bike in there. My concern was growing. I had a routine prenatal visit scheduled on April 1, 1997 and would be checked then. I tried to convince myself that everything was fine, and not to worry. April 1, 1997 would prove to be a turning point in our lives. A day that we shall remember for many years to come. It wouldn’t be a day for April Fools jokes or any other. We were about to be placed in a battle. A roller coaster ride that we thought would never end. The beginning of a period of time that would strip us of everything normal in our lives. Life as we had known it would come to an end.
Carl usually went to every prenatal appointment with me but on this morning he was extremely tired. He’d been up half the night dealing with corporate taxes for the business we own. As I left him sleeping that morning, I had no idea how much I would later regret him not being by my side. I left for my scheduled appointment feeling slightly concerned but again I told myself that “all was well”. Immediately I let the nursing staff know of my concern. The Doctor came in and checked me over. I was relieved to hear Gabby’s heartbeat. The Doctor thought it best to send me into another part of the office for an ultrasound. She had no idea it was going to be a turning point for all involved.
The Ultrasound office was quiet. I was now nervous and tried to make conversation with the Technician. As soon as she had the picture on the screen I noticed a black spot within Gabby’s stomach. It was indeed noticeable. What’s that? I could see the look of concern on the technician’s face. “I’m not sure,” she said. My heart now raced. The technician asked, “are you by yourself”? Please God no! Tears now filled my eyes. My mind raced to everything I could think of. She continued the Ultrasound for several minutes trying very hard to get Gabby to move. She would not. After a while she said, “I am going to get the Doctor.” I tried to remain calm but it was impossible. Something was clearly wrong. I wanted Carl. I wanted Sydni. The Physician to enter the room next would be one that changed my life entirely.
PJ entered the room. He sat down calmly. He took my hand and said to me “I am going to tell you exactly what is wrong”. He began to explain to me that Gabby’s life was in jeopardy. The condition is called Meconium Peritonitis, a rupture of her small intestine. The Technician now stood on the other side and gently rubbed my arm. I tried hard to hear every word that PJ was telling me but my mind could not focus. He gave me the information on Meconium Peritonitis. This condition had a name to it and it threatened Gabby’s life. I tried to think of every applicable question that I could but clearly I was devastated. I wanted Carl, and the Technician assisted me to PJ"s office to call him. I spoke his name but could speak nothing more. The tears now overcame my voice and I handed the phone to the Technician who told Carl that PJ would explain everything to him. He did. Carl was able to retain the information that I had not. PJ told me that we would need to find a Pediatric Surgeon at once, that much I had remembered. The information we received had been devastating but at the time I had no idea what fine hands I had been in. In the days ahead I would grow to realize not only the importance of PJ entering my life that day but gratitude, good fortune or perhaps sheer luck at having been a patient in his particular office.
To this day I cannot remember my drive home. I went through every major intersection and traveled busy highways without ever knowing it at all. I was now on a mission, to save Gabby’s life. As soon as I got home, I climbed into our bed with the phone. I placed a call to the Pediatric Surgical Associates of one the most well known hospitals in the country. I needed to be reassured, now. I spoke to Dr. O’Malley and explained what I had just been told. I found comfort in his voice alone, and he reassured me as best he could. He suggested that Carl and I make an appointment at once. We would see him in two days. An eternity it seemed. Carl would spend the next few hours phoning family to let them know we now would endure a complicated pregnancy. We didn’t know how to tell Sydni. The many years that she had spent hoping to be a big sister and now it seemed we may lose Gabby. We decided it was best to wait a few days until we knew more before we would tell Sydni. I had slept my last night.
Exhaustion had now set in. My mind raced. I tried to think of everything, plan everything. I needed to hear Gabby’s heartbeat! Now realizing that Gabby was in a great deal of pain and no longer moved within me broke my heart. Carl tried effortlessly to calm me, to reassure me that everything would be alright. The wonderful husband that had taken care of me for so many years and solved every problem I had ever known could do nothing for me now. This was something he could not fix. The easy going way about him, the huge sense of humor would now have to be hidden. There would be no more jokes, no laughter. Our house became the home of worry. Conversation was limited to "What is going to happen?”. It would be an effort for both Carl and myself to see to it that Sydni’s days were normal and we carried on as if everything was going to be alright. One day into this terrible news and our lives were in turmoil.
My OB informed me that not only had she never heard of this condition, she did not know what approach to take with my prenatal care. She felt it best to refer me to a Maternal-Fetal Specialist. Two days and counting. What else? I didn’t want to be placed in a battle for my baby’s life nor did I want to leave my longtime group of Doctors. At any moment I felt that someone would wake me up and tell me it was all a bad dream. No, Gabby’s life wasn’t in jeopardy and no, I hadn’t been cut loose? As a prenatal patient! It didn’t happen. We were faxed a copy of PJ"s report to take with us to the Surgeon’s office. I read it a thousand times. "This baby has Meconium Peritonitis”. "Her body will form a cyst to try and close the rupture”...”. “The condition is sometimes associated with Cystic Fibrosis...”. CF does not appear likely in this case due to..”. “The baby is in pain.” Mom and Dad should consult a Pedi Surgeon... It was all there in black and white. We knew there was nothing to blame it on. It wasn’t my fault; I couldn’t have prevented it. This terrible condition has just “happened”. Accept it. I made the decision early on not to sit around in pity but to fight with every ounce of my being to save Gabby’s life. There would be no time for “why me"? Carl and I must now do everything in our power to do battle with this “thing” called Meconium Peritonitis. It wasn’t human or animal causing this turmoil. It was a complication, and we would have to fight it. The best way to do battle is to have the proper ammunition. In our case, information.
Maternal-Fetal Specialist are special indeed. Seems fitting that “special” is within their title. In order to be well placed in this field you must be born with it. You don’t learn it. The divine intervention in our lives was already well at work when Dr. Walker called me. His voice was calming. I knew immediately that he would become an important figure in my life, and that I would like him. We discussed possible treatments for me and he answered every question I had. Since the condition is rare, I asked how many cases of this he’d had. “Two?, “one lived and one did not”. We scheduled an appointment. For the first time since the battle began, I had hope. The fear had calmed while talking to Dr. Walker. In two days Carl and I would come face to face with the man who would take over the role as the most important man in my life for a brief period.
April 3, 1997 was perhaps one of the most difficult days in our life. Carl and I would come to know the look of pity. A pregnant woman sitting in the office of a Pediatric Surgeon is something you don’t see everyday. I felt each person searching my face for some sort of clue as to why we were there. We were nervous. I clutched in one hand PJ"s report, and in the other the list of questions for Dr. O’Malley”. We had tried to think of everything that we may have to deal with. “How long after birth before she is taken into surgery”? “Will we be able to see her or hold her first?”. “Will Sydni be able to see her?”. “Do they allow visitors in the NICU?”. “What are the dangers of a neonate having surgery?”. We had an entire page full. I read over the list a hundred times while waiting, just to see if I could think of anything else. The decor of the office was neon lights and cheerful artwork, I’m sure meant to calm children. It did nothing to calm Carl or myself. I felt that I were stuck in a black hole and that everything around me should reflect that. I didn’t feel like being cheered up!
Dr. O’Malley had many years of experience. We knew we were in good hands. The list of questions hadn’t really been needed because he answered each one as he spoke to us. He spent a very long time with us. I watched his face that day more closely than I had anyone ever before. He spoke clearly, precisely and without hesitation. Every few moments he smiled as he spoke. I can see it clearly to this day. His information was honest and straightforward. Just what we wanted. There was no way at this point to tell just how much of Gabby’s small intestine was damaged. If it were too much, there would be nothing he could do. No hope of saving her life. It may not have been the words we wanted to hear but at no point did Carl and I want to be given false hope. Dr. O’Malley had gained our trust within moments of meeting him. She would be taken from me directly to surgery once she was examined. There would be no time to celebrate her birth. Family would be able to see her on the way into the NICU after she was born. Gabby would begin life in this world in Critical Condition. She would undergo surgery as a neonate, and be left with an ostomy so that her intestine could heal. Her intestine would be brought outside her body and her fecal matter would spill into a plastic bag attached to her stomach. As parents we looked forward to Gabby’s birth, we wanted her so badly. Did this child know how much she was loved? Would she ever know?
We spent a long time with Dr. O’Malley that day. He made us feel that he had all the time in the world to sit and answer our every question. As with PJ, I remember thinking how difficult it must be for him to give us the information he was giving. Expectant parents should never have to be there but naturally we were thankful for each person who would now play such an important role in our lives. No matter how badly we wanted Gabby to live, to be alright we made the decision to not be selfish. We informed Dr. O’Malley that there would be no “heroic effort” to save her. She would not live with devices hooked up, tubes within her body nor any artificial means of respiration. If he could not restore her to a “normal” being, then she would need to bypass this world for better places. If she were meant to be in heaven then that is where she will directly go. Carl and I would leave that office nearly crawling, broken hearts in tow. We were now armed with all the information we ever wanted to know about this Meconium Peritonitis. As we got on the elevator Carl tried not to look at me. He put his sunglasses on though they could not hide his tears. This strong man was now brokenhearted, and he could not hide it. I wanted to crawl inside him and die.
Dr. Walker looked as confident as he had spoken. As with PJ and Dr. O’Malley, I liked him immediately. His bedside manner was far beyond reproach. The first step of my care was to have an Ultra Sound so that he could get a good look at Gabby. He measured the fluid in the amniotic sac, monitored her breathing and all of the important things that Maternal-Fetal Specialist do. He explained that due to her condition she could no longer recycle her own fluid and increasing fluid may be a problem. Polyhydramnios as it’s called can throw your body into premature labor by making your Uterus believe it’s time to deliver. Your Uterus has no brain so it doesn’t matter how far along you are. Dr. Walker explained that decompression amniocentesis may become an option for me. The fluid level on this day was within normal limits so we were ok for now. I did get a shot of steroids to help develop Gabby’s lungs more quickly, just in case she should be premature. Dr. Walker spent a good deal of time with us as well. He answered every question that I had written down. He seemed concerned about my “mental state” and adjusting to this very difficult situation. He did explain to Carl that my state of mind was now priority. The information he gave us that day was helpful. We were given the option of testing for CF while I was pregnant but decided against it since there was a chance of a false positive. We had enough to worry about. If Gabby did have CF, we would deal with it when the time came. Dr. Walker inspired me to be hopeful. He would have a calming effect on me on this day, and in the many days ahead. Carl and I left his office feeling much better than in the previous days.
For those of us that have ever been placed in the dreadful shoes, it seems there is no place to turn for support. It isn’t something you can ask your friends about. You can’t find a book on dealing with particular types of pregnancy complications and how to deal with them. Most of the people you know have never experienced it. People take for granted that babies will be healthy and perfect. It’s not always so. People who know you are at a loss for words to help and in many cases, when people don’t know what to do or say, they stay away. It all hurts. There is no information or others say things to make matters worse. For us, being placed in the situation meant that we had to prepare. We had to find every piece of relevant information we could. I wanted to prepare myself in every way possible for what may happen. I wanted to be able to help my baby in any way that I could. We were fortunate to have excellent medical insurance so we had at least one thing going for us. We were also close to a very capable hospital, world famous in fact. That too was a plus. We wanted the very best care for our baby and the very best chance for her to receive the medical care she would require. I saw it all as a challenge and one that I would do everything in my power to overcome.
My prenatal care would change entirely. Frequent visits to Dr. Walker were required. The fluid levels in the amniotic sac did begin to grow too high so the amniocentesis was suggested. All of our questions were answered however making such important decisions on the spot are difficult. You are never too sure of what to do. I knew that I wanted to give Gabby the very best chance at overcoming her rare condition, so I chose any and every procedure that was suggested to me. No, I didn’t like the twenty gauge needles. I looked at my baby on the ultra sound screen and just thought of how much it would be helping her. I wanted to stay pregnant as long as possible and if that meant I had to walk around with that needle in me all the time, I would have done it. Gabby would have a very difficult time starting life due to the Meconium Peritonitis, I didn’t want to add to that by going into labor too early. Each visit to Dr. Walker brought hope. Each visit Carl and I were able to see Gabby on the ultra sound screen and envision that she would indeed be alright. Her respiratory rate was good as was everything else. Dr. Walker had a huge calming effect on me and no matter how bad my days had been or how little sleep I was getting, with each visit he made me feel better about the entire situation. The information he provided to me from a medical standpoint as well as general comfort were priceless.
My life had changed. I could no longer be the joyful expectant mother. I had now been robbed of that. I felt cheated. Carl and I would not have the joy and elation that the birth of Sydni had brought. We had stepped into the world of the unknown. Despite my desire to talk to others that had gone through this type of situation, it was not possible. Physicians are required to follow a code of ethics and this prevented anyone from putting me in touch with others that may have helped me. I may not agree with it but that’s how it was. There were moments when I felt everyone was hiding something from me, lying to me. I decided long ago that if I ever had the chance to help anyone else in the situation I would do everything I could to do so. I would have given anything to find someone that may have understood my fears, my concerns and to tell me what it was like. Medical information is helpful however knowledge from personal experience would have been grand.
I was numb. To focus on anything meant I had to think of other things rather than the situation at hand. It was extremely difficult at best. Carl and I had tried in the simplest of terms to explain to Sydni that her unborn sister was very ill. I had used an example of a water hose becoming blocked and/or burst to describe Gabby’s condition to Sydni. With maturity beyond her years, Sydni understood. The innocence of children is blissful and Sydni’s innocence would prove most valuable to me in the days ahead. There were moments of desperation for me and Sydni would prove to be my confidence builder. The Physicians had all given me their highly trained medical information and advice but it was many times the inspiration of our eight-year-old daughter Sydni that would save me from the depths of despair. During those difficult days when I could do nothing but cry, Sydni would put her arms around me and say “Mommy, Gabby is going to be fine”. I grew to trust her words.
During the weeks of my frequent visits to Dr. Walker I only grew more exhausted. The lack of sleep was taking a grand toll on me. The worry was getting the best of me at all times. I dreaded each visit with Dr. Walker when I knew that I would have to have amnio. My ability to react to anything other than Gabby’s condition was gone. I didn’t want to socialize with friends and there would be many days when I wouldn’t answer the phone at all. Carl became the provider of information to family and friends. I didn’t have the energy. I didn’t want advice from those that didn’t understand. If one more person told me that “God had a reason for this?, I could have become violent. Our baby was in pain within me. What reason could there be for this? If there could ever be one I didn’t want to know. All I wanted to do was to help Gabby. No matter what.
Dr. Walker had done everything to prepare us for Gabby’s birth. He answered each of my questions during each visit. It became common for me to go in with a list of questions and he took the time to answer each and every one. He had become my Knight on the White Horse, the person I deemed to hold Gabby’s fate in his hands. Never would I leave his office that I didn’t feel better before arriving. I would have bottled him and taken him home with me if I could have. He couldn’t possibly know how truly wonderful he is. He had more or less held my hand for weeks. If I ever knew anyone that deserved to wear a halo, it is Dr. Walker. We had briefly discussed my decision to have a tubal ligation during the weeks of pre-natal care however chose to make my decision final at a later date. Dr. Walker would advise me that the decision Carl and I would make would be permanent. He also advised that indeed there was a chance Gabby would not survive, and that we should carefully decide. At a time when so many things were uncertain that would be a decision that required much thought and time in deciding. Something I didn’t have.
The arrival of Lyla Gabryale
Weeks of prenatal care were about to end. I had frequent decompression amnio as well as steroid shots. I was tired. The lack of sleep coupled with worry and fear can affect everything. For me it did. Carl and I had done everything we could to prepare for Gabby’s birth. We had everything taken care of. Arrangements for Sydni who was still in school. My bags for the hospital had been packed for weeks, just in case. I felt like a time bomb that would blow at any moment. My body was tired, my mind bursting with worry. We had discussed every minute detail and gone over all the what ifs. We had asked every Physician every relevant question we could think of. Dr. Walker felt that I was now far enough along to schedule the c-section delivery. The amniotic fluid had been tested to determine if Gabby’s lungs were developed enough for delivery. They were. Dr. Walker contacted Dr. O’Malley and the two of them scheduled her delivery and surgery for May 6th, 1997. Dr. Walker phoned to inform me of this. I said to him “I won’t make it”. I didn’t.
April 26th was on a Saturday and I awoke to find that I had lost the amniotic mucous plug. Knowing that I had done the very same thing the day Sydni was delivered, I was terrified. It was a weekend and key medical personnel would not be on duty. Dr. O’Malley wasn’t on call either. Dr. Walker advised me to go to the hospital to be checked and so I did. Carl and I had made the trip in silence. We were now at the end of the line. Any hour now and we could be facing something more horrific than the past few weeks. I was checked at the hospital and it was determined I was not dilating. Dr. Walker advised me to go home and rest. Rest? Ha! I hadn’t rested in weeks and I wouldn’t for a long time to come. Dr. Walker said we needed to wait until at least Monday so that the specialist we needed would be available. Good idea but how might I convince my body of this?
The next two days were difficult. Carl and I knew that I would be in full-blown labor at any time. My cutoff point with Sydni had been 36 centimeters which is exactly where I was. Over the weekend I tried not to move unless I had to. I didn’t want to do anything to bring on the labor. I sat in a chair for hours or laid in the bed. Sleep had been lost long ago and now would not come. My mind raced every moment. I had carried this baby within me for months, how could we possibly face losing her? How could we possibly bury a baby? How do we cope. For weeks I had prayed to God for strength. Never once did I attempt to make any “deals” for Gabby’s life. I prayed for what was best for her and not what would be easier for us. I prayed for her healing, for a healthy life. Keeping fear away is like fighting an avalanche but I made the effort to do it. I wanted God to know how much love I had in my heart for Gabby and how badly I wanted her. I made a card to be placed on her bed in the NICU that I carried in my purse. It read “Dear God, please be with me every day especially today during my surgery. Give a steady hand and a kind heart to each of the professionals that will care for me. My family will be counting the moments to be with me”. I attached a safety pin and a piece of tape and placed it into a bag. I wanted Carl to place it above her head as soon as possible.
By Sunday night I was now bleeding. I phoned Dr. Walker who advised me that during the night if the bleeding became heavier to go directly to the hospital otherwise come to his office first thing in the morning. For the first time in Carl’s life, he left work early. He came home to be with me. He did everything he could possibly do to make me comfortable or calm. Neither one of us slept that night. We talked nearly all night about the little girl we would shortly meet. We talked over our fears, concerns and shared our pain. Being placed in this situation can put a strain on the best of marriages but we had tried not to let this happen. Carl is never one to express his feelings but during the past few weeks I had seen emotions in him that I never had before. It is very important to keep communication flowing. Make every effort.
Monday morning April 28th. I dressed to go to Dr. Walker’s office despite the pain I now felt in my back. Having never gone through labor with Sydni since she too was a scheduled c-section, I really wasn’t sure if what I felt was labor pains. In the back of my mind I hoped that I would be checked and sent back home. Carl and I took Sydni to school and headed for Dr. Walker’s office. We were caught in Monday morning rush hour traffic. The pains were now more frequent and I knew that I was in labor. we’ve all seen in the movies how ill tempered a woman in labor can be and how she breathes. I was now the woman in the movie! I didn’t want to talk. I didn’t want to sit in traffic. I didn’t want to be in the shoes I was in. Any moment somebody would wake me up and tell me that this was a horrible joke. It didn’t happen.
We reached Dr. Walker’s office. A Nurse realized I was in labor and rushed me into the examining room. I stepped on a stool to get up on the table and my water broke. Like a release of pressure from high above, reality was set. There was no turning back. Carl held my hand. Dr. Walker came in and confirmed that we needed to go to the hospital right now. He said that he would follow soon and Gabby would be delivered via c-section. He made calls to the hospital to let them know we were coming and that there was a problem. The surgical department was also notified. Dr. Walker personally pushed me in a wheelchair down to our car. His role of importance in my life was coming to a close. His job was nearly finished. I failed to realize just how much this would affect me. I had come to depend on him so very much. He had been my savior in this entire nightmare, how could I possibly say good-bye to him? Who would Carl and I depend on now?
Arriving at the hospital I was taken to the Labor and Delivery department. I phoned my Mother who rushed to be with me as did my two sisters. I also wanted Sydni to be present for the birth of her sister. Gabby would be delivered in critical condition but I wanted Sydni to have the chance to see her. It may be the only chance she got, we had no way of knowing. Carl left to pick her up from school. During the time I was alone I felt an enormous feeling of calm. I prayed to God and felt that he was indeed listening. The Nurses hooked up all the needed monitors and told us that Dr. Walker would arrive shortly for the delivery. It seemed as if fifty members of the medical staff came in to either check me or ask questions. The anticipation was mounting. Adding to the stress was finding out that Dr. O’Malley was not on duty that day. Another Surgeon would be working in his place. We kept our faith that everything would be alright and no matter who worked with Gabby they would know what they were doing and do a good job.
Lyla Gabryale was delivered at 11:47am that Monday morning. Carl sat at my side and held my hand. We would look at each other a thousand times with hesitation and worry. We heard a faint cry. There seemed to be twenty people in the delivery room. Staff for me and staff for her. People coming in and out constantly. I wanted so desperately to see her. A Nurse finally came over and spoke to me. She was so close to my face I had to focus on her and what she was saying. I nearly failed to realize that the Nurse standing beside actually held Gabby for us to see. It seemed like a rehearsed play. Nurse one got my attention and held it and no sooner than she said her last word that Nurse two turned and left with our baby before we could get a good look at her. I wanted to yell “wait?! I saw only a quick glimpse. She was pale and had a tube sticking out of her mouth. Carl and I looked at each other as if we both were thinking the same thing. Would he yell or would I? Gabby was whisked out the delivery room door on the way to the NICU. Following her would be all the happiness that the birth of a baby should bring. The real battle had just begun. As I lay on the delivery table I made the decision to have my tubes tied. In my head I wanted to be sure but I couldn’t. How could I become pregnant again if Gabby did not survive? I would be too afraid.
Life in the NICU (Neonatal Intensive Care Unit)
Carl made his way to the NICU at once. I remained in the delivery room and sent to recovery. I wanted to know exactly what was being done to Gabby. How was she? Was she breathing on her own? What did the Doctors think? Could anyone reach Dr. O’Malley Did Sydni get to see Gabby? It would be a while before I had any answers. My family was allowed to come in during my recovery. They each tried to lighten the mood. Carl was able to find out that Gabby was doing well for now. I felt reassured. My narcotic allergies were now making me very ill and I could feel my stomach pain very well. It felt as if the lower half of my body was on fire! I had to receive medication quickly and Dr. Walker informed me that as soon as I could no longer feel any pain I could be taken in to the NICU to see Gabby.
The medications had taken their toll on me. I was heavily drugged. I tried to think clearly. I was wheeled on my bed into the NICU department so that I could see my precious Gabby. Carl stood proudly beside her. Despite my fears, she appeared comfortable. She was breathing on her own so the ventilators were removed. I looked at this tiny baby with her head full of dark hair. I wondered how badly she was in pain. My heart ached for her. The Nurses took me to a private room and I was told that I could return to the NICU soon. The narcotic reaction had now set in and it seemed with every breath I was sick to my stomach. At some point we were told that Gabby did not appear to be as ill as thought. The Doctors on staff felt that surgery could wait. We somehow hoped that she could be healed and by some miracle she would not require surgery at all. We had no idea what means were being taken to determine her exact medical prognosis. Despite the swollen stomach with clearly visible veins, one would never have known Gabby was quite so ill.
Carl and I would go back and forth into the NICU nursery all day and night. The Nurse assigned to her that very first day was a blessing. Her name was Gloria. She was as compassionate as the day was long. We felt so comfortable that Gloria would be caring for Gabby. She took the time to sit and talk with us. To learn every detail of what we had been through thus far. She wanted to get to know us personally. Gloria moved every piece of equipment and monitor in sight so that I could hold Gabby. That meant so much to me. Seeing Gabby laying there so helpless was painful. I wanted to hold her. I wanted to hold her and run away! I would sit for hours on end just holding Gabby close to me. Carl and I both would take turns holding her, rocking her. It became a regular practice for me to sit and talk to her constantly. I would tell her all about the room waiting for her, Sydni, our home, our dogs, and her toys that she would play with. Anything that I could think of I would talk to her. I wanted Gabby to know my voice well and to be comforted. It was important for us to bond with her no matter what the circumstances. I had learned that babies who endure such complications can suffer emotional trauma, which can affect them later in life. Separation from parents can also affect a neonate. Carl and I were determined not to let this happen. It didn’t matter to me that I had undergone surgery that day, I wasn’t about to leave Gabby’s side.
Having a baby in the NICU is difficult. We hadn’t known that before we were allowed to enter we would be required to pick up a phone and call in first to ask permission. The hospital has reasons for this but it just doesn’t feel good to ask a stranger for permission to come in and see your baby. The entire NICU department is depressing in itself. So many babies with different conditions. It is heart wrenching. We wished that someone had suggested we visit the NICU prior to Gabby’s birth. Seeing your baby lying there with equipment and monitors will make you want to run in the opposite direction. It is painful when there is nothing you can do. If we had been encouraged to visit this department before, we may have been better prepared to see what we were seeing. There are so many things that the average person does not understand. It is hard to ask questions when the subject is unknown. You don’t know what to ask or what may or may not be important. Carl and I wanted to know everything and we asked each member of the staff everything we could.
Gabby was not able to eat by mouth due to her condition. I had brought a pacifier and she sucked on that like there was no tomorrow. She was hungry and it was painful to see her wanting to eat. She had the sucking reflex but nothing was coming out of the pacifier and she was mad! She was being fed through intravenous lines. She was receiving TPN. Total Peripheral Nutrition it is called. I don’t remember at what point I learned that the TPN itself could damage her Liver. The TPN and Lipids now used to keep her alive could lead to her death if she were on it long enough. She was being monitored around the clock and the Doctors were trying to determine exactly her medical condition before scheduling surgery. They wanted to know what they would be addressing before going in. She underwent x-rays from every position imaginable so that her abdominal cavity could be viewed. She had IV lines hooked up in her feet and through her umbilical cord. Carl and I stayed with her and held her around the clock. She seemed to be a fighter and would grip our fingers strongly.
I began pumping breast milk and it was stored in a freezer so that Gabby could have it at a later date. My recovery seemed oblivious to me. I had undergone a c-section and a tubal ligation but never stopped to think of it. My body had so much fluid due to the polyhydramnios that Dr. Walker’s shoes had actually been soaked the day of delivery. The only thing I had time to deal with was getting Gabby well. My entire body felt that it would burst due to the fluid. I could not get socks on. My wedding rings seemed to cut off my circulation. Each day the fluid would find another place in my body to settle. One day it was my face and another my arms. My recovery was delayed by my narcotic allergies and I would sit holding Gabby in one arm and a emesis basin in the other. My stomach felt as if my thighs had been sewn up to my ribs and I could not stand up straight. I must have been a sight walking so slowly back and forth to the NICU. Sleep remained something in my past. Carl tried to sleep on a bedside cot but he too was exhausted. We both felt the need to be with Gabby every moment. My family cared for Sydni until Carl’s parents arrived from another state to stay at our house with her. This too was painful for us. Sydni was now in the last few weeks of school and Carl and I would miss all the fun things that would bring. Our lives were now interrupted by a rare medical condition.
The flowers and balloons of congratulations did not come. The visiting friends anxious to see our new addition were absent. The flowers we did get said “thinking of you”. It seemed that hardly anyone could deal with our situation yet we were forced to. By day two postpartum blues set in and I cried all day. I wanted to pick up Gabby and walk right out of that hospital. It wasn’t fair that she was in pain. It wasn’t fair that she had been born with this condition. It wasn’t fair that she couldn"t nurse from me. We had been robbed of the elation that a new baby should bring. Our poor innocent baby was fighting for her life, it just wasn’t fair! I watched the other new parents visit the normal nursery and saw the happiness on their faces. We didn’t have that. Gabby had a wristband on that read “pediatric critical care”. Our precious baby had entered the world in critical condition. My heart ached.
Knowing that I would soon be released as a patient was difficult. How could I leave the hospital and go home without Gabby? My mind and my body knew that I had just given birth but yet she was not readily at my side. This was not normal. A breast pump is not comfortable, especially when you know that the milk you are pumping is going into a freezer and you don’t know if your baby may someday get it. The NICU staff Doctors as well as Dr. O’Malley were unsure of exactly what to do with Gabby at this point. We held out hope that she would recover on her own. The information we received seemed to change each hour. At one point a Neonatal Physician came in informing me that “Gabby has a vaginal fistula”. This had never been mentioned before. It seemed that she was now having bowel movements through her vagina. It was later determined that her diaper had laid on her with stool smeared in the vaginal area and that was not correct. We were in one of the largest teaching hospitals in the world and we were about to learn that mishaps were not unheard of.
We would come to know other parents with babies in the NICU. One couple had arrived a week before we did. Their son had a condition called Meconium Ileus. Similar to Gabby’s Meconium Peritonitis however his large intestine was ruptured. We found comfort talking since our babies’ conditions were so similar. Unlike our situation, they hadn’t known anything was wrong prior to the premature birth of their son. They didn’t have the time to prepare as we had. My information would be helpful to them but I would almost regret alerting them to the fact the condition could be associated with Cystic Fibrosis since nobody else had. I hadn’t wanted to be the bearer of bad news to them. Gabby had begun life in the NICU with their son, a set of premature twins and many others whose conditions varied. NICU parents recognize each other in the halls of the hospital and if you’re lucky, you will become friends with others. There is safety in numbers. You learn to be supportive to them on hard days and they become your support on hard days. Gabby and the baby boy with the similar condition would be tested for Cystic Fibrosis on the same day. We would each wait weeks for the results. The test was a Buchal Swab unlike the standard Sweat Chloride since neonates do not sweat. A swab, which looked like a pipe cleaner, had been smeared within the jaw. The uncertain results would hang over our heads like a ten-ton weight until they were known.
The morning of May 1 brought stress to new heights. I was to be released. Adding to the stress was the fact that Dr. O’Malley came in to inform us that yes, Gabby would indeed require surgery. Now. The past few days had held hope that this would not be so. Wrong. How could I possibly go home if Gabby must endure surgery today? Our family came to the hospital to be with us. Dr. O’Malley came in to discuss with us what the surgery would cover. The Anesthesiologist came in to inform us of possible complications. He gave us information in matter of fact tones but it seemed that someone turned the volume to super high when he said “tragedies can occur”. It played over and over in my mind. I couldn’t think straight. I couldn’t sit down nor stand up. My mind raced. Carl tried to keep me calm but it was useless. How could our tiny baby endure this? At three days old she would endure a major surgical procedure. Something many adults never have to do. Before she was taken to the surgical unit, Carl and I were able to spend time with her. I could not control my tears. Would she be ok? Would they return her back to us? Would something worse happen? I spoke to her as if she understood each word I said. We’ve never felt so helpless in our entire lives. Sending a newborn into surgery is extremely difficult. Somewhere in my mind I knew that to survive this day, and have Gabby returned to the NICU department would be the hardest day of my life. All you can do is pray. Pray that your baby will come back alive. Pray that the Surgeons will be able to correct the malformation/condition. Pray that you can cope with it all.
We waited three hours. During this time our family tried to make conversation and take our minds off the situation at hand. Impossible. I forced myself to gather my belongings and pack them, to check out as a patient. Dr. Walker had offered us a “family room” within the hospital to stay in but since we lived only a half hour from the hospital, I was afraid if we took it we may be keeping someone else that was in greater need from having it. Neither Carl nor I wanted to make things difficult for anyone else. Leaving the hospital without my baby was torture but it had to be done at one point or another. Many things went on around me while we were waiting for some word from Dr. O’Malley, I have no idea what they might have been. My mind was ten thousand miles away. I sat there, trying to think clearly. In my hand I held PJ"s original report and read it over and over. I knew the words by heart. Carl and I both were in some sort of trance it seemed.
Finally, I caught a glimpse of Dr. O’Malley down the long hall. I focused on his face as he came closer, searching for a sign of good or bad news. I couldn’t tell. He spoke precisely, “the baby is alright”. It seemed as if someone lifted a ten-ton weight off my shoulders and I literally dropped in my chair with relief like I had never known. He further explained that for unknown reasons, her small intestine had ruptured. Her body had formed a cyst to try and close the rupture. He had removed several inches of intestine and given her an ileostomy so that her intestine could heal. He hoped that could be reversed later. And so it was. The information that PJ had given us weeks before when he looked at her on an Ultrasound screen through me was “right on the money” as they say. It had taken a famous and capable hospital four days to decide her condition and only after going in did they know. We were so grateful that Gabby had made it through such a major surgery. Carl and I looked at each other, no words needed. I wanted so much to see her and upon seeing her being wheeled back down the hall on her bed, I took off running. Dr. O’Malley called out for the staff to “hold up” so that Carl and I could see her. I nearly fainted! Her tiny body was listless, she was heavily sedated. Her eyes were taped down and bandages covered most of her small abdomen. Oh how I wish I hadn’t seen that sight! She now had a Broviac catheter that had been placed during surgery. This would allow blood to be drawn as needed, the TPN and Lipids to be delivered and/or other medications without having to “stick” her each time. It was embedded into her chest and attached to a long cord that hung from an IV pole.
Gabby was now on the long road to recovery. Carl and I would stay with her for a long time that night. I couldn’t believe that such a tiny baby could survive all of what she had thus far. The five pounds and one half ounce that she weighed at birth had now dropped somewhat. We could only hope that the TPN would sustain her. The Nurse Gloria was such a kind heart and I was so glad that if I did have to leave that she would be taking care of Gabby. She took great pride in her job and it showed. Gabby always looked comfortable and so clean when Gloria was on duty. Gloria was so very special to us. Leaving that first night was very hard. When we reached our home, I nearly had to crawl inside. It just wasn’t normal not to have Gabby with us. My heart felt is would break into. Dr. Walker had given me strong sedatives but they did nothing for me. Didn’t affect me whatsoever. Sleep just would not come anymore. My body had grown so used to it now. I would make phone calls to the NICU during the night to check on Gabby’s condition.