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.

The news

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.

Surgical Beginnings

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.

"Gabby at 6 weeks of age...Prior to the Takedown Sugery.

A New Way of Life

Our new life had begun. My new routine was to spend all day and night by Gabby’s side. Sydni was being taken care of by Carl’s parents in our home until she finished school. Carl’s Father would travel many times to and from their home in another state and back again. Our situation had now affected their lives as well. We owe so much to them for their help. We were so fortunate to be able to have the help, many do not. We were torn between our children. I wanted to be with Sydni as I always had. There when she came home from school, making dinner and all the usual things I did. Carl continued to work but my job was now to learn each step of Gabby’s care. I wanted to bond with her no matter what. No, I didn’t particularly want to sit in an NICU for twelve to sixteen hours each day but I felt I had to. My own body had surgical procedures to heal from but I didn’t care. Dr. Walker had ordered me not to drive for a few weeks but the need was there. By day three I was driving myself to and from the hospital. Much to my Mother-in-law’s dismay. Gabby needed me, and I was determined to be there.

Each day in the NICU was a new experience. You see so many terrible situations and many families share their pain. Although the circumstances are dismal, the chance to socialize and get to know others can’t be ignored. People you otherwise would never have met. We each had one thing in common, our babies were ill. Sharing the pain is a comfort. Each of us deals with stress in different ways. I would see parents that couldn’t handle it, others that were angry and took it out on anyone near them and the rest of us wanted to do anything to learn. Education for me was key in Gabby’s recovery. I asked questions all day and night. If a member of the staff could not answer me, I requested that they call someone who could. I designed Gabby’s Ostomy patterns, kept them pre-cut and quickly learned each step of the care of the Ostomy itself. Whatever means of care that I could provide, I did. When Carl wasn’t working and was there with me, he too learned as well. Neither one of us hesitated to provide Gabby’s care. If we were going to aid in her recovery, we had to be educated every step of the way. My mother’s instincts would take over which led me to make decisions or question staff members, and thank goodness I was right. I knew my baby better than anyone, I wasn’t about to be ignored!

Gabby’s condition changed on day three due to the narcotics she was receiving. The Fentanyl caused respiratory depression in her and she would quit breathing. Standing beside my baby and seeing her turn navy blue was hard. Dr. O’Malley discontinued the Fentanyl and made note of this in her charts. Since I too am allergic to narcotics, I believed she had inherited this from me. She began to improve very slowly. After ten days or so, she was allowed to have her first bottle. The amount would have filled a thimble but she was happy to have it. She drank that down like a champ and wanted lots more! The bottles looked as if they belonged to a doll. Gabby herself could wear doll clothes she was so tiny. The formula was a special pre-digested formula but Gabby didn’t care. I continued to pump breast milk and it went into the freezer for later use. We were delighted we could now feed her. As a Mother, it is hard not to be able to feed your baby, you wonder if somehow their tiny little minds question you for not doing so. It was a major accomplishment. The amounts were increased very slowly and boy was Gabby happy. After being taken off of the ventilator Gabby was fitted with a C-pap device for oxygen. This is a device that literally smashes your nose and is connected to either the ears or head to stay on. In Gabby’s case, we tied the lines to a hat. At four days old Gabby was able to lift her hands and push both the C-pap device as well as the hat right off. I wanted to know what she felt so I would take make finger and smash my nose as hard as the C-pap was her"s. Ouch! Go ahead...try it. I began to remove the C-pap to massage her nose, to give her relief. I noticed that her oxygen levels were good while the C-pap was off so Gloria, wonderful Gloria, called a Peds Surgical Resident in at Midnight to write orders for the C-pap to be removed. Hooray!

Our routine continued. Each day to the hospital. We were now spending a good deal of money on parking, food and other things. The amounts quickly add up. Sydni was finishing school and we would soon have to allow her to go home with Carl’s parents. Something I would never have done in any other case. We had never been away from her and in my heart I couldn’t stand to be away from her, especially now. The entire situation began to leave Carl and I with very little time together. We each handled things differently. I was now used to sitting by Gabby for hours and hours, he was not. The alarms, monitors and equipment in the NICU can drive most people nuts, and for Carl it did. I had learned to block out all of the sounds. Sitting in the NICU wore Carl out and I became angry at him for not being able to cope with things as I had to. My body had been through so much, I took the amnio routinely, I worried about this baby in pain within me, the least he could do was sit there and take it like a man. The entire ordeal was driving a wedge between us. We were all suffering more than we realized. It’s important to communicate as much as possible so the negative feelings don’t have a chance to build up. We tried but the level of stress is so high, it’s only natural the effects are felt by those nearest you. There would be days when I missed Dr. Walker greatly and wanted to go to him for support. In some way I was now having separation anxiety from Dr. Walker. Carl tried, God bless him but really there was nobody that could have lessened the pain within me during this time.

Gabby began to gain weight. The ileostomy was functioning normally. She was making progress and we began to count the days until she could go home. Dr. O’Malley had informed us that he would like her to go home, gain up to twenty pounds and then return for the reversal of the ostomy. The “takedown” they call it. We were so eager for her to be home. Carl and I were fully able to provide her care and looked forward to being at home. Our family life could return to normal. Sydni could come home and we could be the happy family we always had been.

In the third week Gabby was moved into the step-down nursery in the NICU. She was on her way home! I had transformed her bed in the NICU to a “mini nursery?, complete with a music box, her own clothes and toys that she could look at during those long days.

Progress in Week Three

“Uncle Gary” came into our lives three weeks after Gabby’s birth. He was a Pediatric Surgical resident. He spoke with a heavy British accent. Dr. O’Malley was out of town so “Uncle Gary” would assume the position of working with me. Poor guy! I questioned each and every adjustment he made to her care. Perhaps he felt that I didn’t trust him at first but he quickly learned that it was just the Mother in me. We were now waiting on the results of the Cystic Fibrosis test for Gabby, and I was under a lot of stress. When I went home late at night I didn’t have either of my children with me. The path our lives had taken created stress that I’m sure oozed from my body. Carl was alone as well. No longer was I home to take care of things like I always had. His work schedule prevented us from hardly seeing each other at all. We were now reduced to phone calls. You don’t realize how a situation like this will take away all normalcy in your life. It did.

“Uncle Gary” made the decision that Gabby could now have breast milk. She began getting small amounts of the milk that had been frozen. I looked so forward to when she could actually nurse herself. She was monitored one full day to see how she adjusted to this and by the next morning although she was now having a higher output from her ostomy, “Uncle Gary” assigned her to a private room. I hadn’t been notified of this before coming into the hospital that day. I wouldn’t leave the hospital for a long time. I intended to remain with her every moment now. Carl would bring me a suitcase with everything I would need. He would be there when he wasn’t working. I now lived in the hospital. It had become my residence.

One day into the private room and Gabby’s condition was going down hill. Her intake now poured through the ostomy, sometimes shooting all over everything. She was in pain. “Uncle Gary” tried various medications to relieve her pain to no avail. It only became worse. He would come in each day and tell me “this is a problem with CF babies”. Since Dr. O’Malley was out of town still, I became convinced that she did have CF and we were not being told. Each day “Uncle Gary” talked more and more about CF. It was torture for us. Gabby cried now nearly twenty four hours a day. She was losing weight, her eyes now sunken and purple. She was sick. To me she looked as if she were dying. My stress level was at an all time high. If someone asked me my name, I literally could not tell them. I actually had to think about it. The worry over Gabby’s condition, my lack of sleep, not being with Sydni or Carl put me on the verge on a nervous breakdown. I felt at any moment someone with a white jacket was coming for me. Many medical staff members become so used to working with this type of situation they forget what pain families are going through. I found myself having to defend my actions of wanting to provide Gabby’s care. They assumed I hadn’t wanted them to bother. Being a caring Mother can be turned against you.

The care on the private floor was nothing in comparison to the NICU. All of the breast milk I had pumped for three weeks had now been lost. Nobody could explain what had happened to it. To this day, I have no idea. My emotional state was fragile. As parents, Carl and I had made it through the complicated pregnancy, the trauma of Gabby’s birth and following surgery. What we expected to be a two-week hospital stay was now growing longer. We weren’t prepared for the extended stay or the setbacks in Gabby’s condition. We had watched our tiny baby fight for her life and now her condition was growing serious. The emotional support from the hospital was limited to a Social Worker coming into the room one day and telling me that I “needed to realize heaven needs little angels too”. The very idea! In my mind I would have been justified in tossing her right out the window at that point. I ignored her comments and her ignorance.

Gabby was in severe pain. She cried continually. Carl and I took turns holding her while the other tried to sleep. I went through one thirty-six hour period with maybe four hours of sleep. I felt like dropping to the floor and giving up. I couldn’t. Carl relieved me as often as he could. On the day the results of the CF test came back, it was all I could do pick up the phone to call Carl. I had no energy left. Needless to say, we were happy that Gabby wouldn’t have anything else to deal with medically. I now became angry at “Uncle Gary” for having tortured me over the issue and when he next came into Gabby’s room, I let him know it. We had been well aware of the possibility, he hadn’t needed to scare me. If I had to bet money on it now, I would say he’d handle things differently in the future. Later I would learn that the baby boy in the NICU was positive for CF. It made the hair on my arms stand on end. Something that had never happened to me before nor since. I felt as if someone had lined all of us, fired a gun but we had managed to escape the bullets. The fact that Gabby did not have CF came as such a relief. For weeks I had read over and over PJ’s report stating it did not seem likely in her case. An ounce of hope that had again in PJ’s information had proved to be accurate. If in fact Gabby had been CF positive, it was almost a comfort to know that both Carl and I would have to be the carrier of it.  We wouldn’t spend the rest our lives blaming each other. We were so grateful that Gabby had tested negative yet sympathetic to others that had not.

Gabby’s condition was worsening by the moment it seemed. Something had to be done. It would be “Uncle Gary” that I summoned to her room. I held Gabby in my hands. Her body so tiny. Her pain so intense. I pleaded with him, “please do something, and do it now?! She looked so bad, I knew she couldn’t hold on in that condition. Dr. O’Malley had returned on this day and within a very short period of time that I pleaded with “Uncle Gary?, Gabby was admitted to the PICU. Once a baby leaves the NICU it is rare that they can return for fear of contamination to the other babies. “Uncle Gary” and I sat and talked before she was transferred and I think he began to understand my pain as much as he could. It would be “Uncle Gary” that would become my friend in times of despair. Who would’ve ever thought?

Life in the PICU (Pediatric Intensive Care Unit)

Like the NICU, the PICU provided excellent care. The Nursing staff was compassionate. They saw the more traumatic cases and the critical illnesses. Carl and I were relieved that Gabby would be getting the intense care and attention she needed from the staff. Dr. O’Malley would now see to it that Gabby’s lab work was corrected. I felt reassured that a Nurse would be at the foot of her bed if needed. Again, I stayed with her all day and night. She had been so close to going home when things had taken a turn for the worse. For the first time in days, Gabby was resting comfortably. I could see hope again. I left the hospital and went home to try and sleep in my own bed. Dr. O’Malley came in several times a day to make sure that everything was going good with Gabby. “Uncle Gary” and the other Pediatric Surgical residents came as well. “Uncle Gary” and I became fast friends. He now took the time to make me laugh or try and ease my mind. Dr. O’Malley seemed to always have a special interest in Gabby, and this meant a lot to Carl and I. As long as Gabby was feeling better, I was feeling better.

Again, all of my time was spent at the hospital. I would sit and cry over not being able to be with Sydni. Carl and I both missed our “normal” family life. We counted the days until we could all be at home. Most of the time I felt as if absolutely nobody understood the pain I was feeling, including Carl. As a Mother, I dealt with things differently than he did. I made a point of speaking to other parents, family members. We each found comfort in one another, no matter how differently we were. Others had come from other states and were unable to leave the hospital at all. You meet others whose situations are far more serious than yours and your heart bleeds for them. You help each other to cope. When you are placed in the shoes of desperation, there is comfort in the masses because others just don’t understand the pain. You lose the ability to come and go, to sleep in your own bed, to cook your own food, to use your own bathroom, to socialize with friends. Normalcy is gone and only those on the same path can possibly understand. I wanted to take Gabby’s place in all of this but I couldn’t. It was eating at me each and every day to see her suffer so very much. You resent the entire situation but yet you know that if your child must be strong, you too must be. To deny the severity of things leaves room for hope in your mind and that’s the one thing you hold onto with all your might.

As long as Gabby was feeling better, my emotional stress improved. During the first few days and weeks in the PICU I became the family cheerleader. I tried to meet every family member of a child in the PICU. I met a woman whose son was dying of cancer at eight years old. I would sit with them when I had the time. I came to know the parents of the baby next to Gabby in the PICU. Unlike Gabby, this baby had a genetic condition and she was fighting for her life too. She endured things far worse than Gabby. You learn to adjust to the differences in other people. I couldn’t understand what made this couple have this baby despite knowing the Mother carried a deadly gene. They had lost one son to the same condition previously. You respect others for their choices despite the shortcomings you may have. When an abused baby was placed next to Gabby, it would be a test of my respect for others. One that I failed miserably. When the family approached me with questions over Gabby’s condition my intolerance poured out with weeks of pent up stress. Carl and I were fighting for Gabby’s life, we hadn’t put her there! We had no choice in the matter. They did. There would be several children that died due to abuse during Gabby’s stay in the PICU and my tolerance never improved. It never will.

The Nurses in the PICU were wonderful. During the day, Gabby was routinely cared for by a Nurse named Michelle. We became great friends. Michelle and I would talk all day as she worked. She took great care of Gabby and respect my desire to provide all the care for her that I could. Michelle would work twelve hours each day and I am so thankful she and I were able to become friends. After all, she and I were spending a great deal of time together. It would have been horrible if we hadn’t liked each other. The night shift Nurse that routinely took care of Gabby was named Gayla. Another compassionate soul. As with Michelle, Gayla took the time to get to know me as a parent. She too would become a great friend. Michelle and Gayla would “sign up” to be Gabby’s Nurse each day that they worked. It was a relief that they both would come to know Gabby so well. I took comfort in each of them being familiar with Gabby. When Gayla was on duty at night, I could actually go home and sleep somewhat. I would still call during the night to check as well as first thing each morning. Carl would call from work as well.

More Surgery

Gabby continued to improve. Her weight increased. She was able to eat by mouth again having had that taken away during the setback. One week turned into two and on and on. By week three in the PICU, Dr. O’Malley felt that she now needed the “takedown” surgery. SURGERY AGAIN! We hadn’t expected that so soon. Sending her to surgery again now was yet another blow. She wasn’t able to hold onto the weight she gained with the ostomy and Dr. O’Malley was hopeful once her intestine was reconstructed, she could. Carl would go and donate the blood for the transfusions. The process takes several days and during the first surgery we hadn’t had enough time for Carl to donate the blood. This time, he would. We were now well into June of 1997. Gabby had remained in the hospital the entire time. Going home would be so sweet. We kept Sydni posted each day on Gabby’s condition. We took photos and mailed them so she could see her sweet little sister. Oh how Carl and I longed to have them both together at home. We missed her so badly.

The stress of Gabby going into surgery again had mounted. I cried all day the day before. There was no way to comfort me. The stress was back. It affected my milk supply and pumping breast milk was now becoming harder and harder. A pump cannot sustain you forever. It now appeared highly unlikely that Gabby would ever be able to nurse from me. Realizing that Gabby’s hospital stay had almost never gone as planned was difficult. Almost nothing had happened as expected. You quickly learn that rarely do things go as planned and that in a hospital when someone says “10am?, it likely means 7am or possibly 2pm. Gabby had seen so few days of actually feeling good, the thought of sending her to yet another set back was hard. Each time a neonate goes into surgery it is dangerous. Yet you have to do it. You cope the best you can. Carl or I would have gone for her but we couldn’t.

The morning of Gabby’s scheduled surgery, Carl and I arrived very early to be with her. We went to the surgical department with her as well. I held her, rocked her and prayed with her. Carl did the same. “Uncle Gary” came in to speak with us as did Dr. O’Malley. “Uncle Gary” knew that this was difficult for us and he took the time to discuss this with me. He had come to understand the pain. “Bring her back to me” I said. The standard reply of “Uncle Gary” was “Absolutely” except when he said it, it was “Absolutely”. It had become regular practice for me to have him PROMISE Gabby would be alright. On this day, he did. She was taken down the hall. Carl and I were told it would take approximately two hours for the surgery but that a Nurse would call us in the room and let us know that everything was going ok within a short time. We waited in silence. I was sick to my stomach, now being treated for an ulcer. As always, Carl tried to comfort me as best he could. Thirty minutes now neared an hour and we both grew anxious not having heard anything. I turned to Carl to say something and out of the corner of my eye saw “Uncle Gary”. I knew it was too soon for the surgery to be over. My heart stopped! We locked eyes and he slowly walked across the room towards me. It seemed to take forever. I couldn’t move. He knelt down in front of me and took my hand. “Gabby is ok” he said. I must have let out a loud sigh after holding my breath so long. He began to explain that Gabby had a vaso-vagal reaction during the beginning of the surgery and thus experienced a significant apnea episode. She was now alright he said but Dr. O’Malley had chosen to abort the surgery. Thank God! Many Surgeons would have gone ahead but Dr. O’Malley hadn’t. I’ve never been so scared in my life, I feared what “Uncle Gary” was about to tell me. I questioned if she had received the Fentanyl again and was told that she had. In my mind I knew it was the cause. I failed to realize that everyone else hadn’t.

Carl and I each felt our lives had been reduced several years that morning. After a recovery period, Gabby was to be taken back to the PICU. Carl and I were able to see her before “Uncle Gary” himself personally took her back into the PICU. Again, they stopped so that I could see her. She was listless and her eyes glazed. I talked to her and held her hand. Carl and I would be allowed into the PICU to see her once she was stable. I would later learn from Michelle that when “Uncle Gary” had gotten her into the PICU, he himself had been a nervous wreck. She told me that his voice was quivering and he was running around asking “are you sure she is alright”. She reminded him that he indeed was the Doctor! He had come to care for Gabby on a personal level, something they are trained not to do. To break the promise to me would have devastated him at this point. He had no idea how very much I appreciated him. Gabby was listed in “critical but stable” condition and Carl and I returned to be by her side. I questioned Michelle on this day how much Fentanyl she was receiving. I assumed she had to have something. Michelle had no idea was I was asking. Clearly, Carl and I were upset at the circumstances of the day but once the stress lightened we were able to joke that Gabby just simply didn’t want to have surgery today.

Three days later, the surgery would be attempted again. Again, we arrived very early and again we went to the surgical unit with her. Both “Uncle Gary” and Dr. O’Malley came into to speak to us. I made sure to tell “Uncle Gary” that this time I don’t want to see you for two hours! He had found a way of comforting me. His sense of humor was priceless to me. Carl was appreciative that I had found comfort in “Uncle Gary” as well, since he was unable to be with me all of the time. Gabby would go into surgery this morning with a T-shirt I made especially for the event. It read “Caution...Handle With Care. Please don’t tickle my vagus nerve and when we’re done, return me to my mommy, STAT”. The staff loved it. This time, we would receive the phone call that everything was alright. Whew! The surgery took a little over an hour. Gabby was now ostomy free! The stress Carl and I felt was relief to know that surgery was a success. We sat by her side in the recovery room and when she was returned to the PICU. Dr. O’Malley and “Uncle Gary” were satisfied as well. It was over, or so we thought. She would never again have to have surgery.

Back in the PICU Gabby remained on a ventilator. Standard practice after surgery. She was heavily sedated on Fentanyl and I again questioned Michelle how much she was getting. Again, she didn’t understand why I was asking and I had no idea that she didn’t know! A near fatal error was about to happen and nobody realized it. Carl and I sat with Gabby all day and night. Very late, we decided to go home and try to get some sleep. We would be back first thing in the morning. Once we reached home, I took the heavy sedative prescribed by Dr. Walker and this time it put me in a deep sleep. Carl was able to rest as well.

During the night our phone rang. Carl answered it. It was a PICU resident Physician Dr. Pompalus, informing Carl that Gabby was having severe apnea episodes. Carl reminded him of Gabby’s previous experience with the Fentanyl in the NICU, it was in her chart! Carl told him she needed to be taken off of it at once. We had felt confident before leaving since Gayla was with Gabby. We had no idea that her history with the Fentanyl wasn’t known in the PICU, and the staff failed to realize what was happening. Gayla had even thought Gabby was having seizures and had a Doctor come in to check on her. Once Carl notified Dr. Pompulus about the Fentanyl, he continued to give it to her. Not only that, but he added Morphine on top of it! These two narcotics are chemically unrelated but produce the same side effects. If I knew that, how could it be that a Physician with her didn’t? Gabby continued to have apnea episodes during the night and again Dr. Pompulus phoned to let us know. Again, Carl told him to stop the Fentanyl! I was sleeping so heavily I had never heard the phone ring.

At 5am, I heard the phone ring and in a daze answered. It was Dr. Pompulus. “Gabby has had a severe apnea episode” he said. “she’s had to be revived”. WHAT! Not knowing what had gone on during the night, I nearly jumped out of my skin. He asked for permission to do a spinal tap. I refused. I knew that it had to be the Fentanyl. How could this have happened? I demanded that “Uncle Gary” be called at once. “Get him on the phone now” I said. I would later learn that Gabby had not been taken off the Fentanyl during the night. Furthermore, Dr. Pompulus had refused to inform the Surgeons of her apnea episodes. He felt it was a medication problem and not a surgical problem. I suppose it didn’t matter to him that she was a surgical patient. Gayla had revived Gabby. Gayla would later tell me what a dark gray color Gabby had become and how hard they had worked over a ten-minute period to revive her. It made me sick to my stomach. To know that Carl and I had been sleeping while Gabby was in such a horrible condition. To know that I hadn’t heard the phone ringing. How could this have possibly happened in such a well-known hospital? Nobody ever explained it to me. I raced to the hospital to be with Gabby that morning. “Uncle Gary” had promised to keep everything stable until I arrived and that no spinal tap would be done. Nobody ever informed me that Gabby had been given medication to paralyze her that morning. She was now on a ventilator again. The cycle never seemed to stop.  Five steps forward and ten back. This setback could have and should have been prevented. I will relive it over and over in my mind until my dying day. I placed a sign on the front of her chart saying “NO FENTANYL” and Dr. O’Malley would add “NO MORPHINE”. I let everyone who thought of coming around her know that her chart was required reading! I never saw Dr. Pompulus in the PICU again, and up until that point I had seen him everyday.

Gabby had survived now the rare Meconium Peritonitis, her premature birth, two surgeries, setbacks and a near fatal round with Fentanyl. Surely, this was enough! What more could this tiny baby endure? Carl and I were convinced that things had to get better. Had to. Again, she was unable to eat by mouth. This was always very difficult. You can’t explain to a baby why they can’t eat. They want to, especially after having done so. At a Mother, it tore my heart out. She had spent her entire life up to this point in the hospital. She was a fighter and had come so far. Battled everything she had to. I would sit and draw strength from her. If she could endure all of this, I had to also. Carl and I were amazed at her. She taught us so much about being strong. She wasn’t “textbook case” on nearly every issue and she wasn’t about to stop. It became the joke of the PICU, “leave it to Gabby”. During the days after the “takedown” surgery, she was on a ventilator again. Although she was able to breathe on her own, she was to remain on it for a while. I had taken note that she appeared to be gagging on the tube. I suggested to Michelle that she was going to throw up. Michelle said “she can’t” since she also has a naso-gastric tube. No sooner had I asked exactly how long Gabby must remain on the ventilator than she did indeed throw up. Michelle and the rest of the Nursing staff began running! The ventilator was now going to blow the vomit into her lungs. Panic seemed to set in everyone but Gabby and I. The ventilator was quickly removed and once she was examined to determine it hadn’t been blown back in, she was breathing on her own just fine. Michelle would point out that Gabby had answered my question, she wanted off the ventilator. Now. Leave it to Gabby! The staff that day had never seen this happen. I later learned that had the naso-gastric tube been properly placed, Gabby could not have thrown up. Never the textbook case!

Gabby at 8 weeks of age...Resting comfortably however still very ill.

Progressing to the Private Room

Gabby was now slowly gaining weight again. She appeared to be well on the road to recovery. After an extended stay in the PICU, she was again transferred to a private room. Dr. O’Malley had been out of town again but “Uncle Gary” and an Attending Peds Surgeon monitored her progress. “Uncle Gary” and I had become true friends. I had even taken to playing cupid, trying to set him up on dates with Nurses. I’m sure that I drove him mad the way I asked questions, questioning their decisions but never again had he made me uncomfortable. He took the time to make conversation with me, to make me laugh or even smile. That was a major accomplishment during this most difficult time in my life.

As before, I never left the hospital while Gabby was in a private room. Except if Carl was with her. We took turns going home and trying to keep up with things around the house. Laundry, paying bills, collecting mail etc. Things that had become so unimportant to us. We kept Sydni and other family and friends posted each day by phone. We had few visitors during the entire stay, people just can’t handle the sight of a sick infant. Gabby had been indeed just that. July was fast approaching. It was hard to believe Gabby had been in the hospital since April and our lives had revolved around it. Some days we wondered if we would ever go home to live again. Would our family ever be normal? The light at the end of the tunnel seemed to escape us.

The wait was on the see if Gabby could now have bowel movements on her own. I would sit each day and literally hold a suppository inside her in an effort to help her go. At first, nothing. The Doctors were growing concerned. Once she had bowel movements, she could eat again. she’d now had the naso-gastric tube in for most of her life. It drained the bile from her stomach. Once that let up, it was a sign everything was flowing through her intestines as it should. It didn’t happen for many days. Carl and I became parents anxiously awaiting on a dirty diaper! Praying for it, couldn’t wait for it. Finally, after many days Gabby began to have small bowel movements. Hooray! She was slowly introduced to food again. Each day the amount would increase. To make sure that her system could indeed handle it. Things were going well. There were mishaps and rude staff members during this time. I was told that I “knew too much and intimidated everyone” by a Nursing Manager. I found myself having to remind others that I had now been fighting for Gabby’s life for months and I would do anything I had to do! I would tell everyone never to be afraid to ask questions, push when you have to. Don’t dismiss your instincts. They can’t imagine what it’s like to be in your shoes and you hope they never are.

Although Gabby was vomiting frequently, she appeared to be now well. I was concerned enough about the vomiting to ask if a contrast study was needed to determine if anything were wrong. It wasn’t. We were now so close to going home that I could feel it. Sydni had been able to come home and actually stay at the hospital with us. The private room was a double room with an extra bed and she wanted to be there. The hospital had a large playroom and Sydni would spend time there playing with other children and making art projects for Gabby. She painted, she colored, she played games. She was happy to be home and Carl and I were most happy to have her home. It didn’t matter that we had to be a family living in a hospital, we were together. It did Carl and I both so good to have the four of us together. My stress level was getting better and better.

June 28, 1997, Lyla Gabryale would leave the hospital for the first time. We were headed home! Hard to believe. We left the hospital without ever having newborn photos made. We left the hospital with no offer of help to get the many things a two-month stay had accumulated. There would be no ride in the traditional wheelchair. It didn’t matter, we would crawl on our stomachs if we had to. We could go! Dr. O’Malley had come to say goodbye, as did “Uncle Gary?, Michelle, Gayla, Gloria and several other members of the staff that we had become so very close to. Dr. O’Malley removed the last of all devices, the Broviac Catheter that had been surgically sewn into Gabby’s chest via her carotid artery. We even saw Dr. Walker before we left. Gabby was now on a special formula but could eat like a normal baby. The formula would cost $35.00 per can, a cost not covered by insurance. Carl and I would have sold our body parts to pay for it if we had to. Gabby would have anything and everything she needed. My trying to pump and save breast milk had been in vain. She was able to nurse from me two times but by then there was really nothing left. Despite my lack of milk, she nursed like a champ. At least we tried!

The Homecoming

Being home felt so very good. You can’t imagine the many things you learn from an experience like this. You learn to really value your children in a way you never could have before. You learn what really matters in life. Any material possession that Carl and I own could have disappeared and we would not have noticed. For me, it was life altering. I am no longer the same person that I was in April 1997. My personality has changed. I learned patience. I learned medical knowledge. I learned the inside workings of a hospital, some of which I could do without. I learned strength from a tiny ill baby. Carl and I learned that our marriage is the strongest it had ever been. We weathered the rough times and many days that we wanted to throw in the towel but we prevailed. Gabby could now sleep in her comfortable bed. See her beautiful room that had been created many months before. Sydni could now be the big sister that she’d always wanted to be. I could for the first time in months cook meals in my own kitchen. For a brief period, we loved every minute of it. A setback was lurking around the corner but I somehow think God knew we needed a break. For all of our efforts and Gabby’s strength, we deserved time at home.

We tried to settle into a routine and put the difficult months behind us. It’s not something you can simply “snap out of”. It was as if were an illness we all had to recover from. We had been robbed of being a close family. Robbed of so much time together. The normalcy in our lives. Despite Gabby now being home, I couldn’t fully relax. I felt compelled to keep one eye on her nearly twenty four hours a day. All the while stepping back into my role as wife and Mother to Sydni as well. Gabby was now two months old and since she had not been able to eat for much of that time, she would choke if she had a wet burp. She would hold her breath not knowing what to do. On one particular night, I had placed her in a crib beside our bed. For reasons not known to me to this day, I stood straight up at 3am to look at her. She was thrashing! Realizing that she was not breathing, I realized I had to find a suction device at once and ran up two flights of stairs with her. I don’t know what led me to the device but I somehow knew exactly where to find it. My body has never shaken as it did that night but I was able to clear her airway and she again was fine. Worry and fear had moved in, would they ever leave? Comforting me would be Sydni, who had also for unknown reasons awakened and ran up the stairs right behind me. Carl had been working on this night.

And Back Again

Gabby’s vomiting had continued. It was now getting worse. I knew in my heart before we left the hospital that something was not right. I had questioned it but since the Doctors didn’t seem concerned, I had convinced myself she would grow out of it. She now had diarrhea too. I took her for an appointment with Dr. O’Malley and was relieved that he thought it was only a gastric infection. We could go back home. We changed her feeding as Dr. O’Malley suggested and waited for improvement. Two days later, the projectile vomiting started. I phoned Dr. O’Malley"s office but was not able to speak with him. I knew it had to be related to her complicated history and pleaded with the secretary to connect me. I was told to call Gabby’s pediatrician instead. I did, and thank goodness he had me bring her in at once. Gabby hadn’t been able to have immunizations yet and it worried me to have her near others that may be ill. We certainly didn’t want her to get the chicken pox or anything else. The pediatrician, Dr. Small checked Gabby over and had us take her for x-rays. Upon that being done he came in and told us “go back to the hospital at once”. He added “do not stop anywhere, go directly to the hospital”. We knew Gabby had a chance of getting an intestinal blockage but Dr. Small advised this could be even more serious. He gave no particular names or disorders.

Carl, Sydni and I were crushed. We knew something was seriously wrong. What? Would we make it to the hospital? Would we now lose Gabby? She was now having bilious vomiting and it covered me and my clothes. We would have done anything in order not to return to the hospital. It’s like returning to a prison. A place where you have experienced such pain and sorrow. You avoid any place that has caused you such unhappiness. We would take no chances, we would do as ordered. We wanted Gabby well. After all this time, it just had to come at some point. We reached the hospital and found that Dr. O’Malley wasn’t on duty. Another Surgeon would meet us as soon as we arrived. Dr. Small had called ahead to inform the staff we were on the way. We made arrangements for family to pick Sydni up since Carl and I had no idea what this trip would entail. Again, we waited. Hurry up and wait, that’s what you do in a hospital. You hurry and wait for recovery. Hardly anything seems to happen on schedule in a hospital.

Gabby was immediately x-rayed once again. We were told that she had an “infection” and would need to be admitted once again. I asked if this may mean an additional surgery and was told it was a possibility. Looking back on it, the way Carl and I were confronted with this information, we should have realized it was far more serious than what we were being told. The look on some of the staff member’s face is now clear to me. The PICU was notified that Gabby was on the way up. Some of the PICU staff even came to the emergency room to see her. The Pediatric Surgical rotation had changed and “Uncle Gary” was no longer in that department. I wanted to run through the hospital and find him. I needed him. I knew he would give us the information we needed, he wouldn’t sugar coat anything. At some point I did have someone call to find out where he in fact was but was disappointed to find out he wasn’t on duty either. I knew he would have come, no matter where he was. Carl and I were like two whipped dogs. Poor Gabby. God please tell me when it will stop.

The PICU was as we knew all too well. Carl and I stayed with Gabby for a long time. Again, she had to be taken off the formula. Again, she was not happy. We were glad to see Gayla on duty however she was assigned to other patients. She came in and comforted Carl and me. We stayed with Gabby a long time and when she fell asleep we went home. We were again stressed, exhausted from the events of the day. The dark green bilious vomit covering my clothes nearly choked me with the stench. If nothing else, I could change clothes and come right back. We didn’t know if we were in for another two-month stay in the hospital or if she would survive this time at all. Information would come in the morning. Neither of us would sleep very much that night.

Carl and I would return the first thing the next morning. We brought Gabby’s favorite vibrating chair for her to sleep in. That made her happy. I read her charts to see that her white blood count indicated a very real problem. Still, nobody had mentioned anything other than infection. I read the charts until I came to “NEC”. Necrotizing Entercolitis! Infection? Ha! NEC meant that her intestine was in effect dying. A death sentence after all of this? I nearly fell to my knees. Dr. O’Malley came in to let us know that Gabby would have to be stabilized and her lab results improved before they could even give her tests to determine the severity of her condition. Please God no. The fear, it was back. It was intensified to an all time high. We seemed to be stuck in a never-ending nightmare. Gabby continually had to fight for her life. Would it ever get better?

The next several days were spent improving Gabby’s condition. Carl and I had nearly resigned ourselves to the fact that we may very well lose her this time. A contrast study was finally done and determined that Gabby didn’t have NEC after all. She did have a blockage and a kink in her intestine. Serious enough but it looked better than the NEC. We knew what this meant. Yep, more surgery. There would not be time for Carl to donate the blood again. It had to be done quickly. “Uncle Gary” came every day to go over her charts himself and to visit with us. He wasn’t even assigned to Pediatric Surgery anymore but he took his own time to come by. A true friend in deed. It was during this time that we named him “Uncle Gary”. We joked that Gabby had missed him and wanted to come back and visit him. The “Uncle Gary” stuck and soon everyone was calling him that. The new Pediatric Surgical rotation had to learn Gabby’s history. On one particular day the Peds Surgical resident was getting information from me and he asked “do you work in a hospital”? I said “No, I live in this one”. The new Peds Doctors also adopted “Uncle Gary” and soon it was his name. Some would even ask if he was actually “Uncle Gary” to Gabby.

Surgery Number Three

The surgery was scheduled. Another hard day for all of us. I was so worried over it that I was bent over with stomach pains. I had such a terrible feeling that I considered asking Dr. O’Malley to postpone it. One time that I didn’t go with my instincts. Again, God was taking care of Gabby. Although she would have a significant apnea episode during the surgery, she made it through just fine. We hadn’t known if she would be given another ostomy or not but thankfully, it wasn’t needed. The actual procedure was called “revision of anastomosis” and Dr. O’Malley had been able to open the intestine very wide and clear the blockage and kink. I saw to it that everyone was informed of her previous history with narcotics and sadly, she was not allowed any pain medication. She would recover from major surgery with Tylenol. We had again gone to the surgical unit with her, sat by her in recovery and returned with her to the PICU. Although I had placed on her chart again “NO FENTANYL?, it didn’t stop a Surgical resident from suggesting that Gabby be given Fentanyl. Carl and I nearly fell off the chair. I quickly suggested that he exit the room at once. When we arrived that morning we became aware that someone had actually taped Gabby’s pacifier in her mouth. We would have to deal with the Patient Affairs Department all day over this matter. It could never be explained and whoever had been the culprit of such an ignorant act wasn’t about to admit it. We were given a poor excuse by the hospital. I never forgave them. So many things had now been inappropriately handled, it came to be normal. Damn shame!

Familiar Road to Recovery

Gabby would again go through the steps of not eating. Waiting for a bowel movement. Being introduced to formula slowly. During the surgery she had been given yet another Broviac Catheter, this time on the opposite side of her chest. We settled back into the routine of spending all of our time at the hospital with her. I hesitated to hold her much for fear of hurting her. I had no way of knowing if the Tylenol was helping but I certainly didn’t want to hurt her. We knew she had to be so very sore. We always stood beside her, held her hand and talked to her. Each morning when I came in I would say “sweet baby?... . to let her know I was there. She would open her eyes immediately.  Again, Michelle and Gayla would be assigned to her for her recovery. Silver linings in it all.

Two days after Gabby’s third surgery, Carl and I would have to send Sydni back home with his parents. My heart would never recover from having to send her away. Sydni had been completely understanding through this very difficult period in our lives. Despite having been an only child for so many years, not once had she been jealous or upset by the difficulty. She relished in her role of “Big Sister” and was a blessing during the entire hospital stay and the difficult weeks prior to Gabby’s birth. She did not want to go this time and as Carl carried her to the car, I felt pain in my chest. She wanted to stay home with us, and nothing would have made us happier at this point. She too had learned to “buck up” as the situation called for. Carl and I could not have been more proud of her. Sydni deserves a medal for bravery. Things were made all the more worse that morning when Carl and I arrived at the hospital to find out that Gabby would be transferred to a private room. Again, had we known this Sydni would not be on her way to another state. She could have stayed. I sat and cried for hours over this. Disappointment had become a familiar part of our lives as well, unfortunately.

Gabby would again be slowly introduced to formula. We would again wait for dirty diapers. Always a welcome sight to us! She improved and began to gain weight. She was nearing six pounds at nearly three months of age. Hard to imagine. She had gained and lost weight for weeks but now seemed to be holding onto the weight she gained. We knew that to be a very good sign. Finally! One week later Sydni was able to come home and we were again a family living in a hospital. It didn’t matter, we were together. During these days Gabby had begun to smile and it would be Sydni that she smiled at nearly all the time. Carl and I had assumed it would be a long time before we could see a relationship between the two of them but it happened, right there in the hospital. What a wonderful sight! Things were now looking better than they ever had since the entire ordeal had begun. We were so thankful.

Going Home........For Good

The last week of July 1997 would be the last hospital stay for Gabby. She was now well after three months and could go home. To stay. We tried to settle into normal life again but it took a great deal of time. Any indication that Gabby was sick sent us straight to Dr. Small. As a Pediatrician, he too has learned that Gabby is never textbook case. Neither am I! This time, just to be safe I had insisted that she come home with the Broviac Catheter. I learned each step of the care for it. We certainly didn’t want her to have yet another sewn into her chest if needed. It would be removed a few weeks later by Dr. O’Malley in his office. Upon removing it, it was determined to contain a blood clot. Another bullet dodged!

We watched Gabby develop as any normal baby would. She was right in line with all of her developments and we were amazed. The entire trauma of her young life had not set her back one bit. She has the scars to show for her battles. She should wear them all with pride. She is mighty and strong. Thank God! During her lengthy hospital stay she was awakened every two hours to get vital signs and this is the schedule she would remain on. Carl and I would not sleep normally for nearly a year. Any parent that has gone through an ordeal with a sick child never seems to relax. Even if they do sleep, you must still get up during the night to check on them. Just to make sure they are alright. It takes a very long time to get over it.

What would I advise those in our shoes to do? To learn. Learn all you can about each and every detail. Ask questions, many. Seek any resource that you possibly can. Internet, library etc. Learn medical terms, drug histories etc. Find an ally that can guide you. Seek advice from anyone that crosses your path. Never fear asking questions and if you aren’t getting answers, push harder. Remind people if you have to how you are suffering and demand if you have to that you be treated with compassion. Learn to be an advocate for your baby/child. They may not be able to speak for themselves and it’s your job to speak for them. Nothing is more important than your children and it is your job to protect them, provide for them and be responsible for them. Inquire from each Professional that you may cross paths with if he/she is aware of a resource center within a hospital. Seek counseling if you feel you need it. All of the many days that I sat in the hospital it was never suggested to me. I realize now that it would probably helped me to deal with the stress. Try to make informed decisions and consider all options. The best way to fight a battle is to be armed with ammunition needed. In our case, it was knowledge. The decision I made to have the tubal ligation would have been the biggest mistake I could have ever made if Gabby had not survived. If I had it to do over again, I would not do it. I would be a “baby wanting fool?, that I am sure of.

Recalling the many ups and downs of Gabby’s difficult start in life has been difficult within itself. During her hospital stay, I kept a written journal each day as well as a photographic journal. Someday I want Gabby to understand what she survived. I want her to understand how precious her life is and never take it for granted. We are never promised life, we just assume we will have lengthy ones. We are never promised that babies will be perfect, we all assume they will be. When you think of the big picture, that in the development of babies you have millions of cells coming together to form them, it seems understandable that sometime, somewhere, something can and will go wrong. To recall the ordeal is painful. To think of Gabby suffering all those many weeks and months is something I will never recover from. Each day when I look at her I must remain grateful that she is here and well.

During the first few months Gabby came home we gradually learned to relax. It was difficult. The first sign of a problem, even a stuffy nose and your mind thinks you are headed back. Gabby’s development continued perfectly. She slowly gained weight. Her appetite grew and grew. She had to remain on the expensive formula for a while but was gradually able to have a normal formula. She talked by six months of age and true to her name is “Gabby”. She crawled by nine months and walked by her first birthday. She has been running every since! Big Sister Sydni is by far her favorite person. As Gabby grew, she and Sydni became quite close. Sydni developed games for the two of them. One being the “magic carpet ride” where she pulls Gabby around on a blanket. Gabby laughs in delight. Sydni is quite protective of her little sister. Each day when Sydni comes home from school, Gabby runs to her and hugs her. Happens every day yet Carl and I never tire of the sight. Never will. Both Gabby and Sydni were heroes of the entire ordeal, a fact that we hope each of them will appreciate in each other for years to come.

We celebrated Gabby’s recovery in the Caribbean. A tough year had by all. The tiny ill baby who hated being bathed so badly now must be dragged from a pool or bathtub. That tiny ill baby that endured so very much now dines on Lobster and Crab Legs. On April 28th, 1999 Gabby will turn two. Each birthday is not only a celebration of yet another year but a celebration of her life and will to live. A celebration of the end of the nightmare. A time in our lives that is gone but not forgotten. Gabby has endured great physical pain in her short life, a fact that breaks my heart each time she gets a shot. It doesn’t affect her. She has a high tolerance to pain and I suppose she always will. She is tough as nails and has the personality to match. I still awaken her with “sweet baby”. I still check on her in the middle of the night. I still don’t sleep normally.

Less than two months after Gabby’s homecoming, I had to return to the same hospital for surgery. The ulcer I was being treated for wasn’t an ulcer at all. It was my gallbladder! Good old “Uncle Gary” just happened to be the Chief Surgical Resident in General Surgery at the time but would have nothing to do with my surgery due to the fact we had become so close. Almost a humorous ending to it all.

And Finally...

To say that PJ, Dr. Walker, Dr. O’Malley, “Uncle Gary”, Gloria, Michelle, Gayla and others that touched our lives are appreciated would be an understatement. We will remain forever in debt to the true professionals that put Gabby on the road to recovery. We were blessed in so many ways. I remain in contact today with each of them. Gayla is Gabby’s Godmother. I keep each of them updated on Gabby’s progress so they will all know how much Carl and I truly appreciate their role in saving Gabby.

The many things that birth brings we unfortunately missed out on and will never be able to regain. All the usual happy moments, getting to know this new little person. Those quiet moments in the middle of the night when you nurse your baby. The days when you and you alone comfort them. Those moments are gone. It is hard to understand for others how cheated a Mother feels having lost those all-important first months to a lengthy hospital stay. The many days that happiness should have filled our lives were overtaken by uncertainty. Although I feel cheated somehow, I remain totally grateful that Gabby is alive and well. She is certainly well worth all of the difficulty we experienced.

Gabby is now the lone survivor of all the babies she was near or paired with during her entire hospital stay. I think of the others frequently, as well as their families. To all of those that have been in the battle, for those that did not survive, and for those that will be placed in the battle in the days ahead, God be with you.

Vonda

Gabby, 12 years later (and her sister)

* The names of certain individuals in my story have been changed for privacy reasons.

goodmans@earthlink.net