November 7 - Dear Nicholas Sparks (Guest Blogger Kate Rogula)

Dear Mr. Sparks,

I found out that I was pregnant the day before fathers day June 1997. What a wonderful gift for my husband!! It came as a bit of surprise to us since we were still getting used to being parents to our 6 month son Max! We were a bit worried, I mean could we afford another baby yet? Who cares! We'll work it out... We're having another baby!!



I went to visit my parents the day after Christmas, they live 1.25 hours away. I took Max (13.5 months at the time) with me; we were only going overnight, and my husband had other things to do so he stayed home. I should preface this by saying that I really wasn't feeling 100%, but not terrible either. I was just run down from the holidays, or so I thought and I was 32.5 weeks with a toddler at home; just figured I'd rest while my parents played with Max. As I was pulling out of the driveway, I looked at my husband (Michael) and he said is everything OK? I said yeah, but just sat for minute, and then blew it off. I guess I sort of had a premonition that I should stay home but I ignored it. About 1.5 hours after getting to my parents, I was lifting Max and felt a trickle, I thought I just had to go to the bathroom, but the water just kept coming, not a gush yet, but a strong steady stream. I freaked!! It was too early! I called my doctor and husband and my Dad drove Max and I the one hour back to our hospital. As the drive progressed-slowly- my water started gushing more and more, and I started contracting. My father was wonderful and very calm about the whole thing. By the time we got to the hospital, I had hardly any amniotic fluid left. We couldn't believe how small my belly was already (they broke my water with Max, and he was full term 7lbs 12 oz). Anyway, I think I was only at 1 or 2 cm, I don't really remember. My doctor came, and decided to let my body and the baby (we didn't know her sex till she was born) decide if it was time. For a while, the contractions progressed and I dilated slowly. Then around 8pm or so ( we got there at 4pm) they fizzled out.

The neonatologist came in to explain what would happen once the baby was born; I would most likely not be able to hold her right away. The tests that would be done etc. My doctor didn't want to give me anything to start or stop labor, but it looked like it was stopping. He prepared us for a stay in the hospital and hopefully keep me pregnant as long as possible, but if labor started again, I would deliver. He left and around 1am I sent Michael home to rest and make sure Max was OK. I told him to come back after breakfast. About 3am, the contractions started up again and I knew I was going to have my baby. They had discovered that she was small for her age, but nothing else. I called my husband and he came right back we only live 5 minutes from the hospital. By 6am I'm only about 3cm or so, and begging for pain relief, they wouldn't give the epidural till 5 cm so I got a shot instead to get me by. About 8am they finally decide to give me the epidural and ordered it. The doctor checked me and they started to hook me up, I'm contracting one on top of the other and can't stand the pain, after they lean me forward to inject me, I cry I need to push! I quickly lay back down, not really so quickly, because I have so many tubes in and out of me, and Hailey kept laying on the cord so I was only allowed to lay a certain way, and they were pumping saline into me to keep her floating. The doctor checked me again and I was 10cm and fully effaced. I went from 6cm to 10cm in 2 minutes!! Must have been gravity! I started pushing (the epidural didn't kick in till after she was delivered). I only pushed a short while, and she was out! Its a girl!!! 8:33 am. (I had a bad feeling like something wasn't right; I think I sort of knew we would never bring her home-almost felt like when they said "it's a girl" I knew I couldn't keep her--I can't explain it)

My doctor didn't make it back in time, she came so quickly, he was driving through a snow/ice storm and arrived right after she came out. They took her over to her warming table while quickly examining her, she never cried. I kept asking is she OK? I don't hear her crying! They told me she was intubated immediately, and I wouldn't hear her until she was extubated.

Michael watched the NICU team with her, and before they took her to the NICU they rolled her over to my bed so I could finally see my baby girl, she opened her eyes and I know she saw me! They took her away and finished up with me. Apparently her cord was very short and I had abrupted, the placenta was also starting to calcify (age). I found out later that Hailey had fetal growth restriction which was why she was on the small side..

We called everyone, still assuming we "only" had a preemie 3lbs 4ozs, 16.5" and that she would be in the hospital for a couple of weeks. After an hour they let me get up and go shower, I had just finished when my doctor came in and said he had some bad news. He explained that she had CDH, and just what that meant. We had never even heard of it before. We couldn't believe it! How?? I asked through tears what did I do wrong? Did I hurt my baby somehow? It's perfectly normal, and totally ridiculous to feel that way. He told us they would be flying her out to University of Michigan hospital very shortly. A surgeon from UofM came and talked briefly with us and then a nurse took us down to the NICU to see our baby girl, Hailey Elizabeth Rogula. Needless to say our heads were spinning and we really didn't completely understand what CDH was, or what was going to happen to our beautiful little girl. We just knew that we loved her. By the time we got down to the NICU, they were finishing prepping her for the flight, and the medivac team had arrived. We met with the neonatologist who flew in to pick her up and he filled our heads with more info and we signed a bunch of release forms and consent forms. (including one for ECMO) We finally were able to go in and see Hailey, just for two or three minutes though, she opened her eyes again and looked at us when we talked to her. I didn’t know it would be the last time she would ever see us I would have insisted on staying with her longer. Then it was time to let her go, we were told to wait a few hours before heading to the hospital so that they could get her settled and run a bunch of tests. We went back to my room, and my doctor had given me an early discharge, so I was able to leave almost immediately. We came home to a house full of family and a very confused little boy. He really didn't know about Hailey, at least as far as we know, he'll probably ask us about "the baby" when he's older and has a larger vocabulary. We gathered our things and clung to our little boy, and headed out to the hospital. We don't even remember how we found our way, but we did. We visited with Hailey for a while, and went to find a hotel room for the night, neither of us had slept in over 24hrs.

The next morning (the 28th) we went back to the NICU feeling very exhausted, confused and depressed. We were told she was doing well, but it would be a long haul. She needed to get strong enough to have the surgery to repair the hernia, and there was no telling how long that would be. I began pumping breast milk for her in hopes that someday she would be able to take it. The next 10 days were a series of ups and downs. Very stressful, and extremely exhausting. We would sit and stare at her, and talk and sing and hum to her; I really think she knew we were there. We were willing her to be strong and to get well. We didn't touch her very much, because the slightest things would send her stats soaring or dropping. I was able to help reposition her a few times, and change her diaper or wipe her mouth a couple of times too. That meant the world to me! We commuted back and forth, we needed to be with Max too. She went back and forth between a conventional vent and an oscillating one, and seemed to be doing OK. They just have so many problems when they're preemie and then with CDH too... The day before she died, Michael went back to work half days, and we took our only day off from visiting with her, she was doing fairly well, and we needed a rest. If only we had known. We were both just mentally and physically drained. The hospital called the next morning and had to switch her vent again, but she was doing OK, so they said to come out in the afternoon. I knew when the phone rang that it was bad news... just before we were leaving to go out there, they called back and said they had to put her on ECMO, she was not doing very well. We told them to go ahead if it was immediate, and we would be there in 30min.

On the drive out there I had a really bad feeling. We read more about ECMO while driving, we had avoided it so far hoping she wouldn't need to be put on it. They hadn't started the procedure when we arrived, so thank god we had a couple of minutes with her. The surgeon told us how it would progress, it would take 30-60min, said it was relatively simple to do. Yeah right! When an hour and 15 minutes passed, and still no word, we began to worry, Michael really believed she would be OK, but I knew in my heart that she wouldn't. I went to pump and he came and got me 10 min later.

The doctor needed to talk to us. They were having trouble accessing her arteries, they were just too tiny. They would try lower in her neck or upper chest, but it didn't look possible. We were losing her! Our hearts just broke. The Neonatologist came back a few minutes later to say they would try to keep her on the oscillating vent, but she was not responding well, and would not make it much longer. We were balling, I asked to hold her and he took us immediately to her. Her nurse asked me if we had had her baptized-no-would we like her -yes-then another nurse quickly baptized her. They asked if I wanted to hold her with or w/o the vent, I said w/o! Just give me my baby girl! They quickly bundled her and handed her to me and she died almost immediately and I held her and rocked her and cried to her. She never opened her eyes again and I never got to hear her sweet voice/cry. We spent quite a while holding her. They took pictures, put her in a beautiful white gown and gave her back to us for as long as we wanted. We eventually left with her few belongings in a bag and little purple box.

We consented to an autopsy to see if there were any genetic abnormalities or whatever, and on the off chance that it might help in research development about CDH. We still don't have the autopsy, it takes 6 weeks to 4 months.

Her memorial service was beautiful and she looked beautiful. I miss my little girl so much, I physically ache for her at times... I know she is always with me and always will be.
I had a very uneventful pregnancy, and was not worried about anything since I had such a wonderful pregnancy before. In hindsight I wish I had been more concerned...It was hard to concentrate on my baby growing inside of me when I had to keep up with my little one learning to crawl and walk. We went for our ultrasound at 22 weeks and everything checked out fine. She rushed us in and out so fast if there was anything abnormal to see I doubt if she would have found it. I had it in my mind that I would request another ultrasound in my third trimester to check size and stuff, I had a very tough delivery with my first born. I never got the chance...

Sincerely,

Hailey's mom, Kate Rogula (Michigan)

November 6 - Dear Nicholas Sparks (Guest Blogger Heather Fuhr)

Dear Mr. Sparks,

Hi, I am Heather Fuhr. My fiance, Troy Halter, and I had our third baby on August 25, 2002, at 1:00 a.m. in Madras, Oregon. My pregnancy was normal, except for the fact that I have a heart problem. When our daughter, Taylor-Lynn Faith Halter, was born we didn't know there was anything wrong with her. She wouldn't breath on her own, so the doctors took her away. My doctor came and told us that they thought her heart was on the wrong side. They intubated her and took X rays to make sure they got the tube in the right spot. When they did, they found her congenital diaphragmatic hernia. It was on her left side. The doctors decided to call in life flight since where she was born wasn't equipped to handle her hernia. They picked her up at 2:00 a.m. and flew her to Portland, Oregon to Legacy Emanuel Hospital. There they put her on a ventilator, nitric oxide, versed, fentenal and dopamine.

When she arrived at the hospital, they had her on a normal ventilator, but a few days later had to be put on a high frequency ventilator. She had pulmonary hypertension, systemic hypotension, pulmonary hypoplasia, and respiratory failure. This whole time all we got to do was look at her. We didn't get to hold her, not even after she was born. On August 28th, she had surgery to repair the hernia. It was supposed to last two hours-- it lasted four hours. Troy and I sat on pins and needles the whole time. When they finished, the surgeon came and told us that they got everything back, and they did not have to use gortex to patch it. There was enough skin to fix it. But they did tell us that her left lung was the size of a half dollar and her right was much smaller than it should be, but not as small as the other. We were told that she was fine otherwise. She had to have one blood transfusion and one does of exogenous surfactant. She was able to come off the nitric oxide on September 7th. She was then taken off the ventilator on September 10th.

We finally got to hold her two days later. She had a nasal canula, but other than that she looked okay to us, and we thought we could take her home soon. Boy, were we wrong. We had no idea what was to come. Taylor-Lynn was started on bottle feedings right after she came off of the ventilator. At first she did okay, but she slowly stopped nippling. We were so frustrated. The doctors decided to put a g- tube in. We weren't too sure about that idea at first. I was afraid it would hurt her or that it would get pulled out. The doctors assured me that they had done this a hundred times and that she would be okay.

She had her first g-tube surgery on October 1st. It went well, and they planned on discharging her on the 8th. When we went to take her home, she had green and yellow stuff coming up her tube. The doctor decided not to let her come home. They took X rays and found that they had put a hole in her small intestine and that it was her stomach acids that were coming up her tube. They took Taylor-Lynn in for emergency surgery. The surgery took five hours, and they had to remove a two inch section of her small intestine. Once they did that, she was fine with her g-tube.

Taylor-Lynn finally came completely off oxygen on October 12th. She still had problems with nippling and reflux, so they put her on Prilosec and Reglan. The surgeons and NICU doctors decided she could come home on October 24th, one day shy of two full months in the NICU. I was in Walla Walla, Washington with our two other kids and did not have a way to Portland to get her. A wonderful program called Angel Flight flew to Walla Walla to get me and then flew us home from Portland. Taylor- Lynn is now home and happy. She has her big brother, Chance, and big sister, Jasmine, to play with her. We are still having problems with her g-tube-- she got a staph infection around it, and she is still on Reglan and Prilosec. But other than that she is doing wonderfully. We go back to Portland in December to get a button feeding tube put in, and she has to be seen by OT/PT. But for now we are trying to take things one day at a time. It has been a hard road to travel and will continue to be one. But we love our girl and finally have her home where she belongs.


Sincerely,
Taylor-Lynn's mom, Heather Fuhr (Washington)

November 5 - Dear Nicholas Sparks (Guest Blogger Karla Riley)

Dear Mr. Sparks,

The story of our journey begins in August, 1994 when my husband, Greg, and I discovered that we were expecting our first child. It was such a thrilling time for us. One of our greatest desires in life was to be blessed with children to love, nurture and raise in a happy and loving home. Our joy increased as the size of my pregnant belly grew. We could hardly wait to discover whether our child had "indoor or outdoor plumbing". Finally, when I was 18 weeks pregnant, the day of our ultrasound arrived. It didn't take an expert to point out that we were expecting a boy. He was not modest in the least. However, within minutes, our hearts were shattered as we learned that he was in serious trouble. This just had to be a dream. Nothing could possibly be wrong with OUR child. I remember asking the neonatologist several times, "Now, what is the name of this defect?" He would slowly say each syllable clearly, "Diaphragmatic Hernia". We could never begin to imagine just how familiar that term would become. A "hernia" sounded minor and so easy to fix. Certainly it wasn't as serious as this doctor was building it up to be. That day remains so vivid in my memory, as the doctor sat down with Greg and me, informing us that basically there just wasn't much hope. He told us of three options: 1) abortion; 2) try to carry the baby to full term and hope for enough lung growth to sustain him; or 3) experimental fetal surgery. It seemed to us that this doctor's recommendation at this point, was to abort our child. However, to us, this was not an option to consider. It's amazing to think about how much our life had changed within an hour's time. We went home in shock. I remember going to our bedroom, shutting the door, and just lying in bed all day, crying, praying, and just lying there in disbelief. The next day we began seeking out as much information as possible. We went to the local library and I was able to find a couple of articles on an experimental procedure being performed in San Francisco. I was amazed to read that the Pediatric Surgeons there were repairing Diaphragmatic Hernias in utero. We immediately contacted UCSF to see if we would qualify as candidates for Fetal Surgery. Within a very short time, we were on a plane flying from our home in Orlando all the way to San Francisco to meet with the doctors there and to see if this would even be a possibility for us. We met with the Fetal Treatment team headed up by Dr. Michael Harrison. They informed us that we would be candidates for the surgery. However, they would not be able to perform the full repair on our child due to the fact that his liver was herniated up into his chest. We learned that the umbilical cord is connected with the liver. In earlier cases, the team found that when they attempted to bring the liver down into the abdomen, the umbilical cord would kink, and consequently the child would die. If we decided on the surgery, they would keep the lung fluid from escaping. The lungs would have a chance to grow, due to the expansion of fluid in the lungs. The lung growth could even cause the abdominal organs to move into the abdomen. We flew home to Orlando, knowing in our hearts that this was the right option for us. We wanted to give our son every possible chance for life. We knew that if we didn't have the Fetal Surgery and our son died, we would always regret not having the surgery. We believed that if we had the Fetal Surgery and our child still died, we would have done everything within our power to give this child that we loved a chance. Two and a half weeks later, and 27 weeks pregnant, we were back on a plane, going back to San Francisco. We were ready to start fighting for our son's life. The Fetal Surgery went very well, with no complications. However, the week I spent in the hospital was, by no means, an easy week. I spent a day and a half in complete oblivion while in Intensive Care. The medications used to prevent pre-term labor caused very unpleasant side effects. I developed a mild case of pulmonary edema, which for a short period of time, made it difficult to breathe. One of the medicaitons made my heart race. I also experienced hallucinations and constant hot flashes. It really annoyed me having to wear a fetal monitor 24 hours a day. After leaving the hospital, my husband and I were very fortunate to be able to stay at the Ronald McDonald House in San Francisco. I was ordered to remain on bed rest until the baby was born. Unfortunately, all babies who undergo Fetal Surgery are born prematurely. I was determined to keep this baby in for as long as possible. The room that we stayed in was very small. Looking at the same four walls every day, all day, became very old. I remember on a couple of occasions Greg rolling me eight blocks in a wheelchair to the nearest movie theatre. We were determined to find some excitement! At times, I was so homesick. I must admit it was difficult being without a car, in a strange city, thousands of miles from home. Feelings of excitement soon replaced feelings of loneliness, as they began to see lung growth on the sonograms. Unfortunately, during one of my sonograms, they found that the two layers of the amniotic sac had separated so they had to admit me back into the hospital so that they could keep an eye on the baby and be ready to deliver him, should an emergency occur. Well, on Valentine's Day, Andrew Christian decided that he was ready to face the world. I was placed under General Anesthesia and Andrew was delivered by C-section, eight weeks early. Andrew was truly a fighter! From the very beginning, his course was extremely difficult. i'll never forget the day after he was born, one of the doctor's came in and told us that there wasn't much hope; that he most likely would not make it through the day. They had tried everything, including an experimental procedure, but Andrew had severe Pulmonary Hypertension and there wasn't much more that they could do. Due to the Fetal Surgery, Andrew's lung growth was very significant. He had almost a full right lung and about a quarter of a left lung, but he was having such a difficult time overcoming the Pulmonary Hypertension. The doctors decided to try to place him on ECMO. Andrew weighed only four and a half pounds and the doctors believed that he would most likely be too small. It was a long shot, but it was our only chance. We were told that even if they were able t get Andrew on ECMO that he would only have about a 10% chance to live. Fortunately, they did get Andrew on ECMO, and would we have known just how many more hurdles that we would have to face, I don't know if we could have possibly taken it. Andrew was on ECMO for a week, and we were fortunate that he did not experience any bleeding in his brain. I could write page after page on the many close calls we had with Andrew, and about all that our son had to go through. I specifically remember one occasion being paged by the hospital. They informed us to come to the hospital immediately; that Andrew was experiencing a pulmonary hemorrhage. I'll never forget standing several feet from his bedside, watching all of the doctors and nurses nodding their heads, as if there was just nothing else they could do. I watched as they suctioned blood from his lungs. The pain was unbearable as I watched his little arms and legs tossing about. I felt so powerless. I was his mother. I was supposed to be able to run and pick him up and make everything okay, but I was completely powerless, unable to even stand close beside him. I remember another time, when Andrew coded, during what was supposed to be a simple surgical procedure. When Andrew was about four weeks old, Dr. Harrison and team performed the repair surgery. After the risky procedure, we were informed that Andrew had the largest defect that they had ever seen. His entire left diaphragm was missing. They repaired the defect with a Gortex patch. The doctors stated that without the Fetal Surgery, Andrew would have never had a chance. Over the next several months, we saw Andrew overcome so many hurdles. He underwent eleven various surgeries. We were so proud of him. Andrew was such a joy! He charmed everyone with his big brown eyes and sweet disposition. Even though he was in the hospital, we tried to enjoy every moment with him; rocking him, singing to him, playing lullaby tapes, bathing him, dressing him in colorful socks and hats, and just making sure he knew exactly who Mom and Dad were. When Andrew was four months old they decided to perform an MRI on him to make sure that his brain was okay. It was normal to perform MRI's on babies who had been through as much as Andrew had. Several days later, we sat down with one of the doctors to go over the results. We were not prepared to hear the doctor's next words, "I'm afraid I do not have good news". Greg and I went into total shock as the doctor proceeded to inform us that Andrew had experienced severe brain underdeveopment due to the drastic measures taken along the way to keep him alive. He would most likely never be able to walk or talk. As incredible of a blow as this was, Greg and I made a decision that if Andrew wanted to live, we would do everything possible to give him a life of quality and happiness. As the days went by, we discovered that it was even much worse than we could have ever imagined. We were informed that Andrew would most likely begin having seizures and would not be able to perceive hearing or .sight. He had also developed severe scoliosis, and one doctor believed that there was a possibility of him even having Cerebral Palsy. I cannot begin to describe the pain and anguish we experienced as we went in to see our beautiful little boy, after hearing this news. We had such an overwhelming amount of love for this child. Now, we were faced with a decision. Would we - could we - possibly let him go? We would have loved nothing more than to just bring him home and shower him with love! Somehow, though, we knew in our hearts that the right decision for us was to let him go. After much prayer and oceans of tears, we decided to take him off of the antibiotics, and to decline any further drastic measures. We kept him on oxygen and on Morphine to keep him very comfortable. I cannot think of anything more painful or difficult in life, than letting go after so much fighting, and giving your child permission to die. The wonderful staff allowed us to take Andrew out of the Intensive Care Nursery and into a private hospital room with us. We finally had a chance to be a family. How wonderful it was rocking Andrew in total peace and quiet, with no interruptions, and no beeping and buzzing. We knew we didn't have much time left with Andrew, but we were determined to make this time with him valuable and precious. One day, we bundled him up and took him on his first and only outing; to the beach. I could never count how many stares we received, as we walked down to the sand with an oxygen tank, a morphine pump, a stroller, a car seat, a diaper bag, and a little six pound bundle of cuteness in our arms. This was Andrew's last week with us and his absolute best week. We had never seen him so content and peaceful. It was Friday, June 23rd, when Greg looked at me as he was holding Andrew, and said, "I think this is it Karla." It was almost as if he could just feel his spirit going. I took him in my arms and we told him that we loved him with all of our hearts, and that it was okay for him to go. I sang, "Jesus Loves Me," and Andrew smiled his first smile. Actually he smiled three times, and we truly believe that he was beginning to see Heaven. He then took his last little breath and went to be with Jesus. Our lives are forever changed from knowing a little angel named Andrew Christian Riley. To this day, we have no regrets with the many decisions made along the way. Because of the Fetal Surgery, Andrew was given an incredible chance to live. We would have necer had those four and a half months with him had we done things differently. We spect six months in San Francisco. We are grateful that God has opened our eyes to see beauty and purpose throughout this sorrowful time. I could never bear to think that this six months of our lives meant nothing, that our child was just a mistake of nature. Andrew's life was full of meaning! We choose to rejoice in the blessing of knowing him. Let me say also that, because we are human, we have had our times of questioning. No, it's really not fair this happened. I believe that questioning is a natural part of grief. We have also chosen, however, not to let questions consume our lives, but to move on in life, carrying valuable memories of a wonderful little boy who will always be a special part of us.

Sincerely,
Andrews mom, Karla Riley (Georgia)

November 4 - Dear Nicholas Sparks (Guest Blogger Debra Hall)

Dear Mr. Sparks,

John was diagnosed in utero by ultrasound with a congenital diaphragmatic hernia at 22 weeks gestation. This diagnosis has a 50-90% mortality rate. The amnio was fine. We were followed closely with monthly to twice weekly sonograms and daily kick counts. The concerns were his size (a little small) and (late in the pregnancy) decreased amniotic fluid. He arrived promptly on his due date in a delivery room at Stanford attended by his dad and filled with doctors, residents, interns and med students. He promptly cried and then peed on the OB. He was then whisked away, intubated and taken to NICU. It was a weekend, and the decision was made to wait for Monday morning to repair the hernia. (Most are repaired within 12-24 hours.) At 26 hours he decompensated. (2 hours prior to his scheduled surgery.) He had developed persistent pulmonary hypertension. Passing the criteria for ECMO (extra corporeal membrane oxygenation) by jumping up to a 80% chance of dying, he had his right carotid and jugular ligated for access to ECMO. (I tried, unsuccessfully, to get them to use any other access.) John remained on ECMO 5 days. He began to have lab work evidencing DIC and also acquired candida sepsis from the ECMO circuit. He was also noted to have a grade 1 right parietal bleed. He was taken off ECMO and was fairly stable. No fungal balls were noted in his eyes or his kidney. (This was good as the treatment would be enucleation or removal of a kidney. John's kidneys are fused at the top. He only has one "horseshoe" kidney.) He was given Amphoteracin for the candida sepsis. This promptly shut his kidney down. He was started on peritoneal dialysis. He was kept anesthetized and paralyzed (fentanyl drip and pavulon/tracrium). He remained on peritoneal dialysis for two months, interrupted briefly when he got peritonitis. For that he was given Gent and Vanco, resulting in his hearing loss. The decision was made to proceed with the CDH repair. Either his kidneys would work or they wouldn't. I wanted him awake before surgery. So he was weaned off the Fentanyl and (surprise!) his kidneys started to work. At 3 months the repair was done. At that time his left lung was just a bud. A few days post-op, the lung expanded fully. (He was the x-ray case of the day!) At 3 1/2 months he was weaned off the vent and nursed for the first time. At 4 months we went home. Seven days later we were back in the PICU for resp. failure. This started a cycle. In the hospital, intubated and paralyzed for 3-7 days, every 10 days for 6 weeks. Then I called a PICU Fellow and begged him to admit John before he crumpled again. He was finally diagnosed with subglottic stenosis. (Before that they told me he was getting viruses every 10 days.) The recommended treatment for the stenosis was every 2 week laser surgeries. Sometimes it was same day surgery and sometimes we had to stay for a week of paralytics and ventilation. Between surgeries I had John evaluated at our Regional Center and began OT/PT/Group. I also got him his first pair of hearing aids in June of '90. He got his first baby teeth and began to feed himself teething biscuits and bananas. (Refusing the bottle or cup, he continued to nurse till he was 14 months.) I realized that the lasers were not working, did research in the Stanford library and requested a consult from an ENT specialist at Childrens hospital in San Diego. In July (after a total of 9 lasers), we flew to San Diego for a double surgical evaluation. John spent another week paralyzed on a vent and was discharged with the additional diagnosis of reflux. In August John was trached to let the scarring in his airway mature (so he could get the cricoid split), and placed on meds for reflux. A diagnosis of esophageal ulcers was also made. For the next 11 months we went everywhere with a spare trach, ambu bag and suction machine. People followed us around the grocery store & asked questions. It was heaven having John home for 3 months at a time. During those 11 months, John learned to lift his head, pull to sit and then stand & walk with help. (Not bad for a child I was told would never use his hands or walk!) With John unable to vocalize, we began using more sign language. John caught RSV pneumonia and was rehospitalized from January through February '91. I took him home on oxygen with the new diagnosis of Asthma. (A nice addition to the anaphylactic reactions to milk protein and egg whites.) We added more meds and an O2 tank to the other equipment in John's diaper bag. We continued to see Dr Seid for every 3 month bronchoscopies to evaluate the progress of the subglottic scar tissue maturation. The doctors realized that with the continuing spray of stomach acids into his airway, this was not progressing. In May of '91, in another 6 hour surgery, John had a Nissan fundoplication and had a G tube placed. (By this time John was weaned off the O2.) I wanted John to continue to be able to eat by mouth, so I didn't use the G tube after the first week (except to burp John on 2 occasions). Since I was 'showing' quite a bit by this time, Dr Seid asked my due date. Then he said "let's get rid of the trach before then!" June 24 John had his airway rebuilt: an anterior-posterior cricoid split with rib grafts. In July, while bathing John, his g tube fell out. So we left it out. On my wedding anniversary in July '91, John and I flew home with NO trach, NO O2, NO suction machine and NO air compressor next to the crib. On 8/13/91 I went into labor. John, even then, wanted to steal the limelight from his sister. He had a respiratory arrest in the car. I did CPR for about 1 minute and he came right back. Kelsi (not wanting to be outdone by her brother) promptly was born in the backseat while dad (wanting to share the 15 seconds of fame) got a speeding ticket. John was discharged home in my care that day because Kelsi (mec stained from my adrenaline surge) was intubated (no mec below the cords) and had a lung blown (oh well!) while they observed her on the vent overnight. She wound up hospitalized for 10 days. On 8/15 John rearrested. I witnessed it and immediately attempted CPR. He presented as an obstructed airway. I met with a lot of resistance trying to ventilate him, but I was able to. We called 911. He was taken to Stanford and admitted. At least I had my babies in the same room! The Stanford docs wanted to retrach John. I called Dr Seid and he arranged a critical care flight to San Diego and bronched John himself. A stitch had grown out some scar tissue in his airway. One snip to fix it. At that time he was one of the endoscopic cases of the day for a group of international GI docs. They said his fundoplication looked great. His airway also looked like a typical airway. On 8/27/91 we were all home together. During September and October, John had a few minor surgical procedures (PE tubes). In November he started the infant hearing impaired class. He also began equine facilitated physical therapy. In December, John developed a bowel obstruction. So Kelsi, John and I spent our first Christmas together in the hospital. By February '92, John was standing and walking freely by himself. He also gave up trying to lay on Kelsi while she nursed. He vocalized ha & zzz and loved books and to wave bye bye. In May John began to eat table foods again. (He had reverted to baby foods when he was trached.) In September '92 we were rehospitalized for another bowel obstruction. Then John had his first seizure. I finally quit bargaining with god. ("OK God, I can deal with this, but please not that.") I took John home refusing meds for an isolated seizure. At home, John was picking up and carrying things on command. In October, a repeat bowel obstruction with bowel twisted in the chest, necessitated another major (8 hour) surgery. They did a lysis of adhesions, appendectomy (the appendix was buried in scar tissue) and replaced the diaphragmatic patch. By December, John could pull on his pants, try to put on his shoes, sign "more" and "finished" and loved to play tag with his mom. Early in '93, John was doing simple puzzles, pulling a small chair to the kitchen to watch me cook and picking out cans of food for me to fix. He took Kelsi her bottle on command and without being asked. When Kelsi signed "shoes, shoes, where are my shoes" he took them to her. At this time I pulled John out of the county special ed. and taught him at home. I followed some of Lovaas (only positive reinforcement) and got help by hiring Grad students in psyche and speech therapy (both were 'signers'). When I finally found a good cross categorical class, I sent him to school with one of my Lovaas assistants. The school still insisted that John didn't qualify for OT or PT. So I got into the medical insurance and CCS games. We started paying for our own twice weekly PT/OT/speech. John began floating on his back in the tub and walking up stairs without holding a rail. In April of 1993, John began having frequent seizures. I insisted he stay off Dilantin and Phenobarb. We started on Tegretol. But the seizures increased every time the tegretol was increased. He kept metabolizing the tegretol faster so we couldn't get a therapeutic level. By June I insisted we change the medication. I also changed neurologists, as one said we would never control the seizures on meds, he needed a lobectomy. He also refused to write prescriptions for OT and PT saying that John suffered a massive stroke from the ECMO and it would not help anyway. My new neurologist put John on Felbatol. It was great in that it is not sedating. At that time, there was no maximum dose. (This was before felbamate was linked to aplastic anemia.) We just continued increasing the dose to resolution of seizures. I also obtained Valium to give John at the onset of the seizures (IV Valium given rectally with a small syringe (no needle). (There was nothing like the feeling of helplessness watching John seize for 20 minutes with no meds to give him. As an ICU nurse I was used to having some control, as well as meds on hand and protocols.) The seizures (always as he was falling asleep and beginning with the left foot, up the left side, before crossing & becoming complete) now only lasted as long as it took me to get the Valium (taped to the wall at the head of the bed). They never progressed beyond his left foot. The seizures decreased from 2-3 per week, to one every six months (while still on asthma meds) to one per year. We also switched from cross categorical classrooms to hearing impaired classrooms. Kelsi was starting dance and interested in gymnastics, so I began the kid activities. John enjoyed gymnastics (with me as interpreter and aide) and swimming. We no longer were involved with equine therapy and dropped PT when the therapist said that the gymnastics was helping John more than she could. I found a good oral-motor therapist for speech and we began to get some good approximations. (John is now water safe and loves the pool.) I had been looking through new drug books we were evaluating for the unit, and I noticed that John was on twice the maximum dose of felbamate. The major side effect listed for felbatol was alterations in thought processes. Despite warnings from John's neurologist that he would have massive seizures, I very slowly (over 3 months) weaned John off his felbamate by July 1997. No seizures! In September he was the first "full inclusion" child at our neighborhood school in Pacifica, CA. He learned the alphabet and to count to 10. He also learned to watch other children, and do some of what they do.

John has been in gymnastics (I have to give signed instructions, tell him to follow the kids, and sometimes demonstrate) and in swimming (I have to be in the water to sign and help the instructor), and can jump on a trampoline and walk on a balance beam and is water safe. John can ski the bunny slopes with 'toe clips' on his skis, but prefers to sled. In June of 1998 we went to team training and John received "Vinton," his canine companion for independence. Vinton has been teaching John responsibility and has helped socialize him. Vinton has also become a companion to John, and an anchor for John in airports. They play fetch and tag in the back yard. In August of '98, I sold our house in Pacifica, CA to move us to Charlotte to be with the kids dad (he had been transferred 2 years earlier, and was flying home on weekends to see the kids and watch them so I could work). We put John in the local hearing impaired multihandicapped classroom as he does not fit into a hearing impaired class. John's current medical status is stable. He outgrew his allergies to milk proteins and egg whites. He outgrew his asthma. John's last focal seizure was November '95. We will be drug free for 2 years this July. John has had febrile seizures (very different from his usual seizures) spring of '98 and '99. His current diagnoses are: Hearing impaired, auditory processing disorder, mild atypical CP, apraxia and severe oralmotor apraxia, "static encephalopathy" and history of seizure disorder. Also PDD-NOS. My diagnosis for him is medically and surgically traumatized. He had a total of 24 surgeries by 3.5. John enjoys riding his bike (one training wheel) mostly over off road terrain. He is recently attempting to use roller skates. His receptive language (when not under stress) using sign language is fairly good. Perhaps at a 3-4 year old level. His expressive sign language is at about a 2 year old level. Oral speech has deteriorated since our move. It took me 6 years to find the first great oral-motor specialist, and I haven't found one here yet. He can write the alphabet in upper and lower case letters. He learns 3 spelling words each week. He can count to 30 and has learned the days of the week. He remains a flight risk. He continues to find ways out of the locked house and yard. Our canine companion has found him for me on 2 occasions. He has a definite lack in attending and socializing skills. His auditory processing and oral-motor apraxia are his most limiting features at this time. I am trying hyperbaric oxygen this summer. I would like to see if it helps his auditory processing, attending and his learning difficulties. I probably have left something out. And I'm sure the story will continue.

Sincerely,
John's mom, Debra Hall (North Carolina)

November 3 - Dear Nicholas Sparks (Guest Blogger Kimberly Richards)

Dear Mr. Sparks,

My pregnancy started pretty normal. All seemed well. At my 18-week appt, one of my OB's thought I was measuring small. They did an ultrasound that day. I was 18 weeks, but the US tech couldn't get a good look at the heart. She still wanted me to have one at 20 weeks. Well, they didn't schedule me an appt and it also slipped my mind.

At 22 weeks, I went back. They wanted me to have the US done at my next appt at 26 weeks. So, at 26 weeks, went in had the US. Went to the exam room had my exam. At the end my OB said to meet him in his office he needed to discuss the US with me.
My thought was, this can't be good.

He explained that Olivia had a diaphragmatic hernia and she would need surgery after birth. I needed to see a Perinatologist. That's when we started at U of M. After about 2 visits, one of the perinatologists told us her hernia was pretty severe and that she had less than a 10% chance of survival. Her stomach, intestines, part of the liver were in her chest and her kidneys were floating up. We then had many US, Non-stress tests, consults with neonatology, pediatric surgery, pediatric cardiology. Boy, was it a long pregnancy.

On August 31,2002, Olivia was born at U of M. She was 5lbs 13oz. Which was bigger than we expected. She was immediately taken into the NICU and intubated. She was placed on an Osillating ventilator.

She was born around 5 pm. We were not able to see her until 11pm. By morning time, her CO2 levels were up. The oscillating ventilator wasn't working, She needed ECMO. They had difficulty getting her on ECMO because of her size. One cannula was put in the carotid artery and her vein was too small..they had to open her chest and put the other cannula into her heart. This was weird, too. I saw her x-ray and she had two hemi vertebrae and only 10 ribs. They did genetic testing to see if she had any genetic defects. That came back normal.

Olivia, was puffy due to all the fluids they gave her during her first surgery. And they were watching her for bleeding because of the blood thinner. Now it was a waiting game. We were waiting to see if she was going to be able to come off of ECMO before they repair her diaphragm. After 2 weeks and no luck at trialing off of ECMO, they did her surgery on ECMO. This is when they discovered she had no left diaphragm. They used a gortex patch to repair the diaphragm and the surgery was finished. Now we again had to worry about bleeding and wait for her to recover from surgery and see where things go. Bleeding was a big issue so they slowed down on the blood thinner to decrease the bleeding. She ended up with a blood clot near her chest tube site. They wanted to surgically remove the blood clot. We decided to go ahead with that. The day that surgery was going to take place. Olivia didn't look so good. Her fingers and toes were bluish. We new that surgery was not going to happen that day. We called in our family and we all visited her all day.

We finally spoke to the surgeons and he agreed that surgery would be futile. So that night, we held her for the first time. She was 20 days old. We had to be very careful for she was still on ECMO. Then they disconnected her and we took her to a "nesting room". Chuck and I held her for a long time. Her heart stayed beating for about 20 mins.

It has taken me 5 years, but finally here it is. The story of my daughter, Olivia.

After 5 yrs, all the memories get smooshed together. It was a very long 20 days, with many ups and downs. We are happy that we had those 20 days, but wish we had more days with her. We still miss her everyday.

Sincerely,
Olivia's mom, Kimberly Richards (MI, USA)

November 2 - Dear Nicholas Sparks (Guest Blogger Vonda Hagood)

Dear Mr. Sparks,

My daughter's name is Shana Hagood. She was born with a congenital diaphragmatic hernia on June 20th, 1983. We had no idea she even had a hernia until October of the same year. We were in California visiting my mother-in-law when Shana became very ill on a Saturday, mid-October. She had symptoms of vomiting bile and being very listless. We called the doctor and were told to keep an eye on her-- it was possibly the flu. About two hours later, her lips were becoming discolored, and we knew it was time to take her to the hospital. They ended up transporting her to a children's hospital. After four days of going from the diagnosis pneumonia, then cancer, even diaphragmatic hernia (this was the first diagnosis but we were never informed of that because it was never agreed upon by the residents), they finally decided to do exploratory surgery. They found a very small hernia, the size of the eraser end of a pencil. Her small bowel had become lodged in the hernia and had no circulation during the past four days. The majority of her small bowel had died, but they left 30 centimeters to see if they could save as much as possible. After two more surgeries, she ended up with ten centimeters. This was a blessing for us, because we had been told she would need at least 10 centimeters to even be able to survive, and if she did not, we needed to make a decision on whether to prolong her life.

Shana now was an infant with what they called extreme short bowel syndrome. She was in the hospital for three months straight, during which time she had two bowel obstructions from scar tissue (two more surgeries), a fistula and a fever off and on. The longest I was able to take her home was for about ten hours on Christmas Day. Shana continued to have problems with getting the flu and fevers for the next two years. Her first central line lasted for five years (infection free), which was probably too long; the surgeon said it was stuck, and he couldn't get it out, so he cut the tip off and left it in there with a few extra stitches to keep it in place.

There have been so many trials, triumphs, tears, and yes, joy through the years, one would need to write a book. I have to tell you the funniest story was when we were at the grocery store, and Shana was in the child seat in the cart. I was lifting her out of the seat and happened to look down and saw this tube looking thing sticking out of one of the bars on the seat. I had to look real close (wondering what the heck it was) and realized that her gastrostomy tube had gotten wedged, and when I had lifted her, I had yanked it out. She hadn't made a peep, and it turned out we never told the doctors for three days.

They were tube-feeding her progestimal, and she would wake up every morning and throw it up, and it was actually causing her to lose weight. Come to find out she was one of those few that have a reaction to that formula. We never did get another one. Shana has been through a broviac, hickman, two ports, a cathlink, and I don’t know if I remember all of them. She eats like a horse-- loves big juicy steaks (with lots of fat), potatoes, veggies, pastas, some fruit, potato chips, popcorn with lots of butter, and pretty much everything and anything. Her favorite two things are eggs and dill pickles. She does not care for sweets or peanut butter.

She is now a beautiful young lady of 19, is 5' 7" tall and is definitely on the slim side. Everyone tells her she should be a model. She graduated from high school this year (she was held back in the 2nd grade) and is excited and nervous about going out on her own. She is currently TPN-free due to a line infection (recurring). She is having her line removed next week. We are praying for her independence from TPN, but time will tell. I guess she will need to take one day at a time; isn't that all any of us can do? I remember when we started this journey, not knowing whether Shana would even survive, and now I look forward to watching her fulfill her dreams and hopes in life. When you go through such a trial in life, you want to just embrace each day.

November 1 - Dear Nicholas Sparks (Guest Blogger Amanda and Jackie Rhodes)

Dear Mr. Sparks,

My name is Amanda Rhodes and I am the mother of a very special Cherub, Caleb Michael. It all started when my husband, Jackie, and I decided we were ready to have a child after three years of marriage. We had had an unexpected pregnancy and miscarriage during our first year and decided we had waited long enough and were ready. I got pregnant during May of 1999. I took a home test and it was positive on our 3 year wedding anniversary. We were so excited but so nervous because of the last pregnancy so decided not to tell anyone until I went to the doctor and it was totally confirmed. We only told our family and our closest friends. I teach special education and didn't tell any of my colleagues until we returned to school in the fall. My pregnancy started off so normal. I coach and was traveling a lot for basketball camps and was so sick and so tired. At 20 weeks we were to have a second ultrasound. The first was to confirm the pregnancy and see the heartbeat. My doctor said everything looked fine however our little boy had clorid plexus cyst in his brain. He said not to worry they are common but he was going to send us on for a level 2 ultrasound because they can be related to other problems. At 21 weeks we went not knowing our world would be shattered. I had research clorid plexus cyst and wasn't worried but as we started the ultrasound I knew we had problem. The doctor informed us that our son had Dandy Walker Malformation. a blockage in the fourth ventricle of the brain causing the cerebral spinal fluid not to flow properly and could be helped with a shunt after birth. He then showed us the hernia and the stomach and heart pushed up into his diaphragm. We then did an amniocentesis to check for chromosomal defects. After a week and a half of waiting, it came back normal. Good, the stuff that couldn't be repaired was okay, let's get these others fixed. Over the next three months, my amniotic fluid levels rose up into the mid 40s. I went back every week for an ultrasound because Caleb started gaining fluid in his belly and he was at high risk for cardiac arrest. I was still working at school, researching everyday, and praying that all would be okay. We thought we were in good shaped because the hernia was on the opposite side of the liver and it had not grown any. They warned me that I could go into pre term labor because of my fluid levels. We decided to deliver and proceed with the hernia surgery in Winston-Salem, NC which is 3 hours away from Bristol, TN because of the better technology and their familiarity with this situation. Then one day at school it happened. I went to the bathroom and began bleeding. I called my doctor and he instructed me to go to the hospital. He checked me and I had dilated 2cm and was having minor contractions. I was transported to a bigger hospital with my other doctor who had discovered the hernia. By the time I got there I had dilated to 3 and needed to be transported to NC.I was med-flighted to NC and there they stopped my labor. I was put on complete bed rest for the next 2 weeks. The next time I went into labor on December 1, 1999 and did not realize it until I was dilated to 6cm and they could not stop the labor. Caleb Michael Rhodes was born at 3:11am on Dec. 2 at 32 weeks. He weighed 4 lbs 5 oz and was a strapping 18 1/2 inches long. He put up a good fight but his lungs had been compressed so much by the hernia, and his trachea was so bent from the hernia, that they could not ventilate or save our sweet precious son. We were able to hold him, say hello and goodbye to him all in the same day. He fought for 3 1/2 hours and died early Thursday 12/2/99 morning. We never thought we'd come home without him. We are still waiting for results of the autopsy because the doctors believe there was another syndrome associated with diaphragmatic hernias. God put Caleb into our life for such a short time but in that short time he changed and enriched all of the lives of the ones who fought the fight with him. Thank you for letting us share our story of our son.

Sincerely,
Caleb's parents, Amanda and Jackie Rhodes (Tennessee)