December 21 - Dear Nicholas Sparks (Guest Blogger Kimberly A. Webster)

Dear Mr. Sparks,

I found out I was expecting my second child in September 1999. This would be a sibling to our then 1 1/2 year old son, Cole.

I was so excited and grateful to be given another blessing to nurture and love. My husband and I were so excited as the weeks passed I happily went through all of the prenatal testing. I was very sick once again as I was with Cole but I knew what miracle was happening inside me. We had experienced a molar pregnancy before Cole and we knew how fragile life was this pregnancy progressed and survived a car accident on February 28th. I totaled my vehicle but thank God baby and I were okay.

Early in may my husband, Cole and I went to a routing ultrasound at my ob office. The technician had the look on his face that was too familiar for me. My blood went cold because I sensed his concern. He called a doctor in for a second opinion as to what he was viewing the doctor explained that the baby's stomach looked very full and that was the shadow they were seeing. At a closer look he talked about CDH. It was downplayed so much that I was not worried. I left the office with an appointment for a level 2 ultrasound in a few days. My midwife was teary eyed when I left and hugged me and said she would pray for us. I actually thought everything was fine and correctable. I was a little upset about the possibility of not delivering at our local hospital but at one more equipped to handle the operation that would follow the birth.

The level 2 ultrasound confirmed CDH and my world changed once again I had the feeling that all was not going to turn out okay like I had with the molar pregnancy. I focused on my work and my family and prayed that this baby would battle the odds. The amnio showed no abnormalities and told us we had a daughter. Her name is Shae Ashley.

We were sent to children's hospital in Philadelphia for level 2 ultrasound, fetal echocardiogram and an MRI. After a day of testing we had a consultation with dr. Alan Flake, who most of you probably recognize as one of the forefathers of the studies of CDH. What an honor to be sent to one of the top hospitals in the U.S. and having the worlds best advise you on a decision.

Shae was given a very grim prognosis and fetal surgery was not even offered as a solution. The doctors along with our genetics counselor gave us some choices. After painting an awful picture of what life would be like for our daughter my husband and I knew without a doubt what choice we had to make. I will be eternally grateful to God for giving us the tools to make our decision, and for the strength to carry on despite our heartache.

Back home we met with our doctors to make arrangements. We were going to have Shae at 25 weeks gestation. We knew the outcome and we were at peace knowing she was not going to suffer. We wanted our daughter in the worst way but not at her expense. She was not going to have the life that Cole was having. We could not put her though the trauma of being born with her severe form of CDH.

Being induced was horrible and the birth is something ill never forget. It was the single scariest moment of my life. Then I saw her and immediately felt at peace with my life. I never doubted making the choice. She was truly an angel she touched our lives in a way that no one could understand she was the most beautiful baby.

We are constantly reminded of Shae's life. We have surrounded our home with pictures and reminders. We put in a garden in the memory of her sweet life. We know that one day we will all be together again. Shae is our baby girl and Cole's baby sister and she was called home to do a job. Until we meet again my little princess.


Written by Shae's mom, Kimberly A. Webster (New York)

December 11 - Dear Nicholas Sparks (Guest Blogger Judi Toth)

Dear Mr. Sparks,

I'm retired from the Army (3 years now) and had my son Christopher on February 2, 1989 while I was stationed in The Netherlands. I was a single mom, with no family members there to support me during the pregnancy and also my "nightmare" (they were all in CT). I did have a good network of friends and coworkers and friends from 2 churches I attended. They were my lifeline at the time. 6 weeks before delivery they performed about the 20th ultrasound (I lost track - I was hospitalized 3 different times with contractions) and it wasn't until then that they noticed that they couldn't find his stomach. They thought that it would be a blind pouch, a sealed esophagus, or no stomach. All of which could be surgically repaired. They told me that they couldn't do anything until he was born. They would have a pediatric surgeon on call as soon as I went into labor (which they did). Christopher was born on due day - February 2 after a long labor. They immediately whisked him away from me and out of the room. About 30 minutes later, Dr. Zandfort came back in and tried to tell me about CDH and how that's what Christopher had. I couldn't comprehend it. I just wanted my baby! They told me they had to transfer him to Maastrict University Hospital where they could operate on him. I would be given a few minutes to spend with him before they took him away. I wasn't prepared to see him in an incubator and on oxygen. How could this be happening to him? He looked normal besides all the tubes. The nurse pulled away the blanket covering him and I couldn't see what they were talking about. I told them his stomach and chest looked normal! They told me I could touch him. I did and stroked his little arms. He immediately grabbed my right index finger and wouldn't let go! He squeezed my finger so hard as though he was saying "don't worry Mom, I'll be with you." Shortly thereafter, they came to take him away. As they wheeled his incubator away, I knew deep down in my heart and soul that I'd never see him alive again. I screamed so loud and to tell you the truth, that's when I knew what it was to have your heart ripped out. They took me into surgery to remove my placenta (it wouldn't come out due to placenta acreta -- the placenta grew roots into my uterine wall and wouldn't come out. It was as though it was cemented in place). As soon as I woke up in the recovery room that's all I wanted and screamed for was my baby. They wouldn't listen to me! They spoke a few words of English to me and then in Dutch so I wouldn't understand. What were they saying? Why couldn't I be with my baby? I kept calling for Dr. Zandford. They insisted that I wait 2 hours before they would release me to my room. That was one of the longest 2 hours of my life. Finally, back in my room, Dr. Zandford came back in and explained once again. I wanted to be taken to him. He told me Christopher would be having his surgery that day and that I couldn't see him anyway. He promised me he personally would take me to see him the next day. All day long, I prayed, I asked for updates. Friends visited and prayed with me. My family and friends were calling from the States. Finally, exhausted, they told my visitors to leave about 8 pm. One friend, Lana, would spend the night in my room with me. While she was in the restroom changing I prayed to God again, one on one and told him to do what was best for Christopher. I was letting go and letting God. At about 830, a strange doctor came in the room. I had never seen him before (or after). I took one look at him and immediately knew. When I asked him when, he told me about 30 minutes ago. That's when God took him -- when I let go and let God. There was no sleep that night. My American doctor came to visit along with my minister. The next day it was a steady stream of visitors. They told me they would bring Christopher to me. I wanted him baptized even though I knew he was already in heaven. My minister agreed to perform the baptism. I asked my good friend Pam to bring me a white rose for the baptism. She couldn't find any. But she did find white tulips. He was baptized with a white tulip. My other close friend Jo, who was also my labor coach and mentor, assisted my nurse Marguerite, to dress Christopher in his outfit. She even got him a little gold cross. I was terrified of seeing him and meeting him, after all he was dead. Jo put my fears aside telling me he was my son and that as soon as I held him, I wouldn't want to put him down. How true that was! I got to spend 4 hours with him in my arms. The only time I let him out of my arms was to be baptized. My arms were aching so badly, but I couldn't let him go! Finally I had to. Marguerite had snipped a lock of his hair for me and given it to me. I also had a lot of pictures taken. Marguerite asked me if I wanted to see his scar. That is the only thing that I couldn't look at! The US Army medics arrived finally took him away to Frankfurt for his long journey back to the United States so he could be buried here. I on the other hand spent 8 days in the hospital recovering from the delivery and surgery for the placenta acreta. I'll never forget one of my friends from church, Mary. She came by and we prayed together and she told me "I know how you feel." I yelled at her, "No you don't! How could you possibly know how I feel?" That's when she calmly replied, "Because I've been in your place. I too Lost a child." I felt so terrible for her and yet a little comforted because someone DID know and understand what I was going through. She helped me quite a bit. Finally, it was time to leave the hospital. That was one of the hardest things I have ever done. They had placed me at the end of the hall away from other new mothers. I had to go down that entire length of hall with no baby in my arms. Another part of my heart was being ripped out once again! I made it back to the States and to my family on the 12th. The funeral would be on the 14th - Valentine's Day. John, Christopher's daddy, met me at home (he was in CT throughout the pregnancy) and we made the funeral arrangements together. The evening before the funeral, I was laying down and had a cramp in my leg. Mom massaged it out and I went back to sleep. An hour or so later another cramp. She massaged it again. I went to the bathroom and passed a huge chunk of placenta. I put it in a plastic bag and after calling a friend who is a doctor in Maryland, I went to the emergency room. By this point I couldn't move my legs. They wheeled me into the ER and my mom got her OB/GYN doctor to come in. He examined me and told me I was so infected that if he tried to do a D&C on me it would be like taking a price tag off a piece of wet tissue paper with a blade. I would have to be on antibiotics by IV and admitted. I could only think of Christopher's funeral the next day. He agreed to release me long enough for the funeral. I still couldn't move my legs. To make matters worse for me, the only place they had room for me was in pediatrics! My room had a crib in it! Not for long though! The next morning, after seeing an internist for my right leg at this point, I was allowed to go to the funeral. We had an open casket, much to John's disapproval. But I felt it was important for my family and friends to meet Christopher. I didn't want them looking at a closed casket. I'm so glad I made that decision. So was my family. The funeral went along beautifully and I went back to the hospital. That was the beginning of all my medical problems. Three D&C's and 6 months later I would still have placenta in me let alone all the infections. The cramping in my leg was due to a blood clot that had lodged in my popliteal artery in my leg, behind the knee. I walked around with the clot for 6 weeks before that too was surgically removed. (Which also started the stream of other surgeries.) To this day I still don't know if I can ever have children. I was told to try for 6 months and then they would test my tubes. But John and I broke up by then. I was told that if I had delivered in an American hospital, they would have performed an immediate hysterectomy on me. Dr. Zandford however wanted to ensure that I at least had the chance to try to have another child. God willing, one day I may. If not, I can live with that also. I have been blessed with many children in my life. To include not one, but six, yes six, Godchildren! In the meantime, I was and am always looking to find out more information about CDH. It wasn't until about 6 months ago, while getting into researching angels, did I go looking on the web for cherubs. Lo and behold, the first site that was listed was Cherubs! My heart leapt into my throat! I immediately went onto the site and after reading every page, I contacted Dawn. This was the first mom that I had "met" if you will, that had a child with the same thing that Christopher had. People that I spoke with never heard of CDH (but that didn't mean I didn't tell them what I knew!). I worked at a clinic where newborns would come in every day. It took me a few years, but I was able to finally hold one in my arms. Actually, when my best friend Donna had her son David, is when I held a baby in my arms for the first time since Christopher. I told her it was okay. It wasn't Christopher, it was David that I was holding. That was my breakthrough. Until then, I couldn't even face a toy department to send presents home. I would send money to Mom and she would buy the presents for me. Christmas was extremely hard for me and my family, exchanging presents. But that too got a little easier each year. Each Christmas I go back to Connecticut where Christopher is buried and Put presents under the 2 trees I planted by his headstone (which by the way has a cherub and a tulip on it!). Each fall, new white tulips are planted behind his headstone and in front, crocuses, miniature tulips and daffodils are also planted. I also plant the bulbs in my front yard. Each spring as the flowers come up, I always think of Christopher. A little bit of Holland brought to America to brighten people's day for only a little while thanks to my Dutch baby!


Written by Christopher's mom, Judi Toth (Maryland)

December 8 - Dear Nicholas Sparks (Guest Blogger Jennifer Jenkins)

Dear Mr. Sparks,

When I was 27 weeks pregnant, I went in for a routine checkup, and my doctor was alarmed at the size of my belly. I was measuring around 32-33 weeks, so she sent me to the hospital to have a level 2 ultrasound done, (hoping to find out the sex), and we found out that our baby "girl" had a congenital diaphragmatic hernia. I was hysterical! They immediately sent us to a high-risk doctor, and he explained to us our options. His first suggestion was to terminate the pregnancy. To me and my husband, that was not even an option, so instead he wanted to do an amnio to find out if it was a genetic problem. So we did the amnio, and from there, we were sent to the ECMO coordinator in the NICU. She explained to us what was going to happen when our baby was born and then gave us a tour of the NICU.

I began doctor visits twice a week for ultrasounds to measure the amniotic fluid index and have non-stress tests. In that first week, I was contracting at a regular rate, so my high-risk doctor said we needed to do an amniotic reduction to help stop the contractions. During the reduction, I went into labor, so I was put on meds, and it was eventually stopped, and I was allowed to go home with orders of strict bed rest (not an easy task with a 2 1/2 yr-old at home). My son and I spent our days in my air conditioned bedroom watching Disney movies and taking naps.

I was still having the contractions off and on, so they decided to induce at 37 weeks so that the team of doctors would be prepared for her arrival. Well, Bethany had other plans! She came at 36 weeks. I went into labor at 2:00 A.M. Monday morning and completely denied I was in labor because it wasn't very strong, and I just didn't want to believe it. I felt that as long as my baby was inside of me, then she was alive and with me. At 5:30, my husband woke up to get ready for work, and I was wide awake and in the middle of a contraction. I told him to go ahead and go to work, and I would call him if anything happened. By 7:30 A.M., I knew it was the real thing. So I called my husband and then called my sister to watch my son.

We got to the hospital at 10:00 A.M., and the contractions were definitely there but still nothing compared to what it was like with my first. They hooked me up to a monitor and were convinced it was false labor, that is, until they did an exam. They found that my water was literally bulging and about ready to burst at any moment. I was completely effaced and had begun dilation. They told me to walk around for an hour and then come back. They were afraid my water would break, so they instructed us not to leave the hospital.

We came back at 1:00 P.M., and the nurse examined me again. I had dilated even more, and my water was even closer to being a waterfall. The nurse got my records and knew that our baby was sick, so they cleared out what they call the "Cadillac room" and put me in there. It was like a luxury suite! They treated me like I was so fragile.

They gave me an epidural at 2:30 because they wanted to be prepared for an emergency c-section. At 4:00 P.M., my doctor arrived, and I apologized for not waiting until the induction date. She laughed at me. My labor was now very hard when I had a contraction, but the contractions were still very slow, and Bethany was showing signs of distress. So my doctor gave me pitocin to speed it up. At that point, my mom and hubby were in scrubs ready to go to the OR for delivery, and they had made a bet on what time Bethany would be born. My hubby guessed 6:45, and my mom guessed 6:55. Well, at exactly 6:55 P.M., Bethany Michelle Jenkins was born. I only caught a glimpse of her as they cut the cord and rushed her off into the resuscitation room. She was very gray and didn't even look alive at all. My husband was allowed to go with her, and my mom stayed with me to keep me calm.

I had some problems with hemorrhaging and lost a great deal of blood, but they were finally able to get that under control and stitched me all up. Because of the hemorrhaging, I wasn't allowed out of my bed, even to go see my daughter. So I relied on updates from my husband and the neonatologist.

About 10:00 P.M., the neonatologist came into my room with a solemn face and told me that we needed to start thinking about funeral arrangements because he didn't feel that Bethany would survive the night. I was devastated! I hadn't even seen her yet! My husband stayed at her bedside most of the night and kept me posted on her condition. The next morning her condition had improved somewhat, and she was still with us. They allowed my husband to wheel me in to see her. I thought I was prepared for what I was about to see because I had toured the NICU twice before she was born. But it turned out that it was very different because it was my own child hooked up to all those machines. I think what bothered me the most was the high frequency ventilator making her chest vibrate so violently. I was only allowed to stay for a short time, and when I got back to my room, I bawled and prayed!

Bethany had her ups and downs through that second day and through the night. But by 10:00 P.M. the following night, they decided that she was stable enough for her life-saving surgery. Before her surgery, we had her baptized and then off she went. After her surgery, the doctor came in and told us that she probably wouldn't be awake until the following morning and that they had given her some paralyzing medicine so she wouldn't be moving at all until at least then. Ten minutes after we talked to him, we went in to see her. (They had closed the NICU and did the surgery right there in her bed). When I talked to her, she opened her eyes and stared at me! And when I held her little hand, she squeezed my finger! She was such a little fighter!

The remainder of her hospital stay was touch and go. The first time they tried to extubate her, we were there. They waited for what seemed like an eternity for her to start breathing on her own, but it wasn't flying, so they bagged her and reintubated her. It broke my heart. About a week after that, I was at home resting with my son, (they made me go home to sleep), when I got a call from the neonatologist. He called to tell me that Bethany was off the vent and doing well! She was on a nasal cannul but pretty much holding her own! What an achievement! I was so excited! I went to the hospital, and for the very first time, was able to hear my baby cry. What a sweet, sweet sound!

A few days after that, she swelled up like a big balloon, and her blood pressure went sky high. So her BP meds were upped, and she was put on diuretics to get rid of the fluid that she was retaining and causing her to swell. They got that under control, and then they cut her narcotics off cold turkey! That didn't go well at all! She cried and cried from withdrawals. So they ended up putting her back on them to slowly wean her off. To make a really long story short, Bethy was eventually put on feeds through a Gavauge and then was able to nurse. Then one day when I came in to visit her, the doctor came in and asked me how I would like to take my baby home! He said that he wanted me to "room in" with her that night in a special room, and the next day they would release her. Ohhh, what a happy day!

Bethany is now 3 1/2 years old and doing fairly well. She has some bowel problems, reflux, and if she gets too active, she has some breathing problems. But those are so small compared to what she went through just to be here today! Her development has not suffered at all. She is in pre-school and absolutely loves it! She’s writing her name and starting to spell words, and she is the sweetest child, always thinking of other people before herself. My little angel! Anyway, that is Bethy's story in a nutshell.


Written by Bethany's mom, Jennifer Jenkins (Washington)

December 3 - Dear Nicholas Sparks (Guest Blogger Ed Swartz)

Dear Mr. Sparks,

Jill and I left to meet Jill's obstetrician, Dr. Ruggiero, at Lourdes hospital in Binghamton, NY. When we arrived we found that Jill wasn't close to delivering. A few hours later, Jill's other obstetrician, Dr. Canino, arrived and put her on Pitocin to induce labor. Contractions came on stronger and more frequently after that. As soon as the baby arrived, Dr. Canino flipped it around and announced that we had a baby girl. Dr. Canino placed her on Jill's stomach, and I cut the umbilical cord. We named her Alisha after her grandmothers Alice and Sharon. Alisha was born at 12:27PM, about seven hours after we left for the hospital.

As soon as I cut the cord, my first concern arose. Alisha didn't cry, at least not like I had seen my two sons cry. Our head nurse started bagging Alisha as she appeared to need a little help breathing. I stopped video recording at this point as I sensed something wasn't right. The nurses took Alisha to the nursery, and Dr. Canino followed.

When I arrived at the nursery, all the blinds were down. It stopped me in my tracks. I caught Dr. Canino's eyes through the blinds, and they were wild in fear. I felt I should leave the area. I stopped momentarily in the waiting area between the nursery and the birthing room to collect my thoughts as to what to say to Jill and Alice. The intercom announced, "Code Blue Nursery". I knew this call was for Alisha. A moment later, an urgent call "CODE BLUE NURSERY". My heart sank as I sensed we were loosing her if we hadn't lost her already. I returned to Jill and her mother, Alice, and told them that something was wrong, but that I didn't know what. Dr. Canino arrived at this point and informed us that our baby wasn't breathing on her own, and that I must see the baby even if it was through the blinds of the nursery. I did so. As I watched, Dr. Canino came to the window and mouthed, "Better" which meant they were getting a heart beat and they were getting oxygen in her. Soon Dr. Canino came out, and asked that I return with him to the birthing room. Dr. Canino proceeded to tell Jill and I that Alisha was a very sick baby. She had a hole in her diaphragm. Her intestines came up through the hole, pushed the heart to the right side of her chest cavity, kept her left lung from developing and constrained her right lung. This was preventing the proper oxygen level from entering her blood stream, and her heart was working too hard to make up for it. Dr. Canino insisted that both of us walk to the nursery to be with Alisha.

When we entered the nursery, we noticed our children's pediatrician, Dr. Szkodzinski, on the phone. Someone explained to us that he was making arrangements to have our daughter flown to Crouse Irving Memorial Hospital in Syracuse, NY where they could better care for Alisha's defect. Alisha was blue and cold from lack of oxygen. Nurse, Nancy Jardine, pumped for over an hour and a half, and got her heart rate and blood pressure to better levels. Around this time, respiratory therapist, Pam Ryman, and nurse, Nancy Forsyth, arrived from Syracuse via helicopter. Jill and I were asked to leave the room as they intubated Alisha. Neonatologist, Dr. Yoss came out with the unenviable duty of informing us of the severity of the situation. He said that while in Syracuse, Alisha would be on a ventilator to control her oxygen supply. If this didn't work, they'd put her on nitric oxide which carried some risks such as deafness. If this didn't work, as a last resort they'd put her on a heart/lung machine called ECMO. If on ECMO, she'd be on it anywhere from a few days to up to three weeks after which she'd either be recovering or will never improve. Around 5:30PM, Jill and I bid Alisha farewell. I kissed Jill goodbye after taking her to her private room at the end of maternity. Her mother remained with her. Jill had to stay because she had to heal some, and she needed monitored to ensure there was no post delivery infections.

I went home, and explained to my sons, Christopher and Matthew, that Jill delivered them a baby sister that was very sick, and that Mommy was just fine. I also explained to them what a diaphragmatic hernia was. Christopher, age 8, understood. Matthew, age 3, didn't quite get it at this point.

When I arrived in Syracuse around 8:30PM, my worst fears were reality. Nurse, Nancy Forsyth saw me arrive, and informed me that they were preparing Alisha for ECMO. Alisha did not take to the ventilator alone, nitric oxide didn't help, and the last resort was all that remained. I was introduced to Dr. Hingre, who informed me that this defect is often diagnosed ahead of delivery through ultrasounds. Jill had level-one ultrasounds at 18 and 22 weeks, and the defect was not observed. He informed me that diagnosing it ahead of time would be of little good, except to prepare us for the events to come. While in NICU, I positioned myself at the rear of the nurses' station in view of the ECMO room. The sight was simply awesome. The 15' x 20' room was crammed with about twenty people. The lights were out, and it was dark except for a couple flashlights and Alisha's table. There, four feet off the ground, lay Alisha on her back like Snow White sleeping in her bed with the light shining on her. She was so tiny. The scene was intense, and I felt so helpless 30 feet away.

When the lights came on, Alisha was on ECMO, and the whole nursery breathed a sigh of relief. Pediatric surgeon, Dr. Nicholett, informed me at my asking of the long-term risks associated with the road to recovery from a diaphragmatic hernia. She informed me that lungs, even constrained and undeveloped lungs, grow over eight years. She informed me of the risk of asthma during that time. She informed me of digestive problems associated with the hole in the diaphragm. Alisha would be in the hospital a couple months before she'd improve enough to go home. In the short term, she indicated that they'd wait several days before performing surgery on her for her hernia repair so that her heart got stronger and her lungs got better oxygenated.

Shortly after lunch the next day, Jill arrived from Binghamton. She was discharged that morning from Lourdes hospital, the day after delivering Alisha. She was in pain and bleeding, and she should not have been walking around, but she really needed to see Alisha. Her visit was brief, but very important to her, and she returned back to Binghamton to heal and provide our boys the attention they needed. Our plan for the next two weeks was for me to stay with Alisha during the week, and for Jill to bring the boys to Syracuse on the weekends to visit. We planned to switch roles after that, presuming that Jill was healed by then.

A few days passed uneventfully. Saturday morning, just before Jill and I left for the hospital, I received a call from Dr. Nicholett indicating that Alisha's hernia repair was moved up from Monday to that day at 1PM because her conditions were right, and a good staff was assembled. By 1:20, a procession to the operating room (OR) started. Her primary team of doctors, surgeons, nurses, and ECMO staff walked in step. Security had cleared the halls, and they had removed the carpet on the first floor to ensure that none of the casters on the equipment snagged during the route. About three and a half hours later, Alisha's team came back in similar fashion to how she left. There were more smiles this time. Dr. Nicholett briefed us a little later. Alisha had a very stable and uneventful surgery. She had virtually no diaphragm on the left side. She attached a Gortex patch to whatever tissue was available.

The next morning, Sunday, Dr. Nicholett called to state that the ECMO circuit was clotting, an effect from the previous day's surgery. A circuit replacement was necessary. By 11:30, the procedure was started, and an hour later it was completed with no complications.

The next few days went very well. Alisha was awake a lot, and she moved her hands and legs. She looked a lot like her brother, Matthew. It was at this time that I realized how beautiful she was. Her eyes really brought it out. They were big brown eyes, and they made me realize how much life was really there. She tracked my movements, and her reflexes seemed normal. By the end of Tuesday, Dr. Nicholett planned to take her off ECMO in the morning.

I got the call at 9:30AM Wednesday. Alisha's trial off ECMO did not go well. When they took her off, her oxygen levels dropped rapidly. Dr. Nicholett mentioned that I needed to be aware that Alisha may not come off ECMO. I said that she had to. She agreed. Despite the bad news, Alisha looked a precious as ever. Her eyes opened often and her reflexes were good. However, by Thursday, everyone noticed that her abdomen was swelling.

Friday morning, I got a call from a nurse who said that Alisha was bleeding internally, and that I should come to the hospital as soon as possible. When I arrived at the hospital, attending neonatologist, Dr. Bifano, informed me that an ultrasound confirmed that blood was filling her abdomen, and that the situation was very serious due to her being on blood thinners for ECMO. I called to have Jill pull the boys out of school and come to Syracuse. I told her the situation was grave. We met with Dr. Nicholett whom, after consulting with her colleagues, recommended that surgery be performed to find out where the problem was. After an hour an a half, Dr. Nicholett met us upon completion of the surgery and informed us that a bruise on her small intestine had ruptured. The surgeons were able to control the bleeding, but not stop it. So they brought the bowel to the surface to watch it closely. They were not able to remove it as they normally could due to the blood thinners in her system and the associated risk of bleeding. As after the first surgery, the ECMO circuit needed changed again due to clotting. It was completed successfully.

Sunday, Alisha was quite alert, and we took tons of pictures. The boys seemed to enjoy seeing her eyes open. After the boys' visit, I took them back to Binghamton while Jill stayed in Syracuse. After putting the boys to bed that evening, I spent hours scouring the Internet for information on diaphragmatic hernias. I had been without access for the previous two weeks, and I was glad I got on it. There was a lot out there.

The next few days were spent ventilating Alisha's lung in hopes that it would open up. It opened a little each day, leaving some hope despite the previously unsuccessful trial off ECMO.

On Wednesday, Pam Ryman, Alisha's ECMO coordinator informed us that Alisha's lung was not improving as it continued to have a lot of resistance, forcing the blood to be shunted to arteries without being oxygenated. There was concern that her lung passages were in a fixed state and would never take in oxygen. Later, Dr. Nicholett stopped by to state that she and Dr. Marr wanted to meet with us the next day. I knew it was bad news. She stated that Alisha did not take another trial off and that the four of us needed to set a plan. Jill and I needed to leave the hospital to grieve. I called our minister, Reverend Barry Downing and requested that he come up to baptize Alisha. He said that he and Reverend Janet would come up the next day.

The next day, Thursday, was a tough day. Reverend Barry and Janet arrived around 10:30AM for Alisha's baptism in the ECMO room. I felt a sense of wholeness on Alisha's behalf by having her baptized, and I was grateful for having her receive the sacrament. A little later, we had our meeting in the hospital conference room with Dr. Marr, Dr. Nicholett, Dr. Bifano, Pam Ryman and Bruce Searles. Dr. Marr indicated that Alisha's lung had opened the whole way, and that it still wouldn't take in blood for oxygenation. She indicated that they had done all they can do, and that by Saturday, recommended Alisha be taken off ECMO. I had previously asked the doctors about the feasibility of a lung transplant, and I asked them what they found out. Dr. Nicholett indicated that fetal organs are very hard to come by, and that Boston, Philadelphia, Pittsburgh, and several other hospitals would not consider Alisha for transplant as her chance for survival was remote and her quality of life would be dismal. The hospital staff provided us with material on how to spend your last moments with your child, and we read a lot of it. We came to the realization that our dreams for Alisha were shattering. We hadn't lost hope for a miracle, but we knew a miracle was all we had left.

Friday was in many respects, the toughest day. Jill and I invited our parents, brothers, and sisters to come in town to visit Alisha before she died. We explained to our sons that Alisha was not going to live. As the day progressed, I became more depressed knowing that our time with our only daughter was drawing to a close. Jill and I didn't sleep well that night in fear of the events to follow the next day. We were scared as we envisioned a dreadful passing.

Saturday morning, we called Dr. Marr to find that Alisha failed her final trials off ECMO. When we arrived at the hospital, Pam Ryman and nurse, Helen Fisch, suggested that we bathe Alisha which we did with some assistance from Helen and nurse Beth Gibbs. It was a special moment. Then we dressed Alisha in an outfit and bonnet grandma Sharon bought her. Alisha looked precious all dressed up without the tubes and probes. At this point we felt it important for the boys and visiting relatives to see her this way as opposed to how they had seen her earlier. So we invited them in one last time, and everyone was very glad to see her this way. We took lots of pictures and video, and Alisha was very alert and aware of everyone around her. Then, around noon, everyone left and it was just Jill and I with her key hospital staff, Pam, Bruce, Beth, and Helen. Jill held Alisha in a rocker. I sat in a rocker next to her and held Alisha's hands and stroked her face as she was weaned off ECMO. The experience was very peaceful and nothing like the horror we imagined the night before. For about an hour, Alisha looked at us, gripped our hands, and rested with us as her blood pressure and heart rate slowly decreased and her body cooled. Jill and I cried hard, told her that we love her and will miss her, and bid her goodbye. It was an hour we'll treasure for the rest of our lives. At 1:27PM, Alisha's heart slowed to a stop.

Alisha died of pulmonary hypoplasia resultant from congenital diaphragmatic hernia. We had her cremated. We had a memorial service for Alisha the Saturday following her death. During the week, I prepared a photo album of the many pictures we had taken of Alisha during the nineteen days we were with her. I thought this would help put life to the name for the many people who attended Alisha's service, but had never seen her. Alisha's memorial service was difficult, but very beautiful. It's been two months since Alisha's passing. Our family thinks of her and views her photo album often. The healing is taking place albeit slowly. We love Alisha, miss her very much, and look forward to the day when we see her in heaven.


Written by Alisha's dad, Ed Swartz (New York)

December 2 - Dear Nicholas Sparks (Guest Blogger Beth Interiano)

Dear Mr. Sparks,

I had filled out the form a week ago and forgot to write his story to you so here it is. My son was born on August 9th, 1997 at Monroe hospital in Florida at 12:32 pm. After 23 hours of labor they delivered him by C-section b/c his heart rate was dropping and they had no idea why (before I gave birth I had gone through 3 ultrasounds and the tech told me he had a cyst on his bladder). After he was born the on call doc discovered (by x-ray) he had a DH and was airlifted to Shands Hospital of FL, where he had a central line put in through his umbilical cord, put on respirator, and I can't remember but there was another tube that went down into his belly, IV and sedative to keep him from moving. He had surgery on the 13th to repair the hernia and it went very well. The doc said he did very well because of the fact that he was full term and was 8lbs. and he had enough skin to repair the hernia without the gortex patch. Everything went in his favor and he also didn't need blood during the surgery. They slowly took him off the vent and then the red tube over the next couple of days and when they did I got to hear my baby cry for the first time. Before that I would see his face looking like he was crying but without any noise how I wanted to hear my beautiful son. I would say 9 days after the repair his blood count dropped and required a blood transfusion on 2 occasions while he was getting better he got a UT infection and then fever an they had done several tests to rule out things. There was spinal taps and lots of blood work done. They showed me his x-rays before surgery and after and told me that his heart was pushed to the right and his stomach, intestines etc. were in his chest cavity so that his left lung was under developed. Our next goal was to try to get him off the IV and get him eating that was a long heart ringing process. To watch him drink 3cc of breastmilk and want more but he just spit it up. He eventually increased his intake and spit up less. When the doc said he could come home they did an oxygen test to see if he could hold his own without the tube in the nose. He did poorly so they kept him longer about a week and tried the test again and he did great they said that he probably did poorly b/c of being sick (fever that came on suddenly). They called me and told me that he would be coming home without oxygen. (The surgeon we had almost always sent babies home on oxygen just to be safe). I went to pick up my son Joshua Evan the next day. I had to take some CPR class before I could take him home and then we were on our way after 42 days at the hospital he was finally coming home!! Since then almost 2 years ago we had our problems of the first year of vomiting up at least half of his food intake but he had another thing on his side his daddies appetite so he gained weight at a steady rate. He also had a lot of respiratory infection and croup 5 times. Now he has respiratory problems only in that season and he can't eat too much stuff that is what I call heavy on the stomach such as to much yogurt (his favorite) things like that. He sees his surgeon every 3 months for a check up and chest x-ray every 6 months to see how every thing is doing so far so good, thank GOD. He is growing physically and mentally on schedule.


Written by Joshua's mom, Beth Interiano (Florida)

November 30 - Dear Nicholas Sparks (Guest Blogger Mary Iacobucci)

Dear Mr. Sparks,

I became pregnant with my first child in winter of 1995. What a wonderful time it was (at least for the first 6 months). My husband and I had been married for five years and couldn't wait to start our family. We had our first ultrasound at 20 weeks and everything seemed fine. We were told we were having a boy and immediately named him Anthony Urban. My husband's name is Anthony, and my late father-in-law's name was Urban. It was perfect. Everything seemed to be going along normally for the first 6 months of my pregnancy. I was enjoying the attention I was getting and loved being pregnant. I was working full-time as an administrative assistant for a large steel company in Cleveland. Life was good!

One day at work I went into the bathroom (as we all do several times a day during pregnancy) and noticed some spotting in my underpants. I immediately called my doctor, and she wanted to see me right away. I wasn't too worried at that point, but I cleaned off my desk because I had a feeling I might not be going back to work for a while. When I got to the doctor's office, she gave me an exam and said she thought I had a clot on my cervix, but that I needed to go to the hospital for more tests. I called my husband from the doctor's office and broke down crying. I couldn't believe something was going wrong with my pregnancy. This wasn't supposed to be happening. My husband met me at home and we headed to the hospital. When we got there, we went to the labor and delivery floor, and they immediately hooked me up to a fetal monitor. The baby's heartbeat was strong and steady. I was starving, but they wouldn't give me anything to eat. After several hours there, they said I would need to spend the night and have an ultrasound the next day. After I got checked into my room, my husband left, and we had a tearful goodbye.

The next morning my husband came back to the hospital, and we went for our ultrasound. It seemed to take forever. The technician really took her time. She did have a strange look on her face. She left the room and went to get a pediatric cardiologist. We were so scared. Could something be wrong with our little Anthony? He came in and continued the ultrasound. Afterward he told me to get cleaned up and that he wanted to talk to me and my husband in a private room. After he left the room, I lost it. I knew it was very bad news. He explained to us that our son had a hole in his diaphragm. He said it appeared to be a small defect, but that it would require surgery as soon as possible after he was born. We were in shock! I wouldn't be bringing my baby home with me. That wasn't right. What did I do wrong?

I got back to my hospital room and broke the news to my mom and dad. They were devastated. Then my mom began to call relatives to let them know what was going on. During all of this, everyone seemed to forget about the spotting I had. The next day, my ob came in and said I could go home. I was so happy. I just wanted to go home. A few minutes later, she came back and said I wasn't going anywhere. I had placenta previa. My placenta was blocking my cervix and causing the bleeding. This condition would require strict bedrest and regular ultrasounds to see if it would improve. I had my husband go home and pack me a bag of clothes and personal items I would need.

I spent 7 weeks in the hospital on very strict bedrest. I had several bleeding episodes and got more scared with each one. I was told it was critical that I keep this baby inside of me as long as possible to increase his chance of survival. A pediatric surgeon met with us as well as a neonatologist. They both explained to me what would be happening once Anthony was born. He would have quite an uphill battle and so would we.

On March 10, 1996, my OB performed an emergency C-section on me. I was 36 weeks pregnant, and the bleeding had gotten worse. If they didn't do it now, both mine and my baby's life would be in danger. Anthony was actually born at 12:01 am on March 11, 1996. He weighed 7 lbs, 4 oz. Quite big for only 36 weeks! He already had size on his side. They whisked him away to the NICU, and I didn't see or hear him. By the time they got me sewn up and to the recovery room, I was exhausted. My family members came in to see me, but I made them all go home. It had been a long night, and there was nothing they could do. I spent 14 hours in recovery with excessive bleeding and had to receive 2 units of blood. My body was traumatized and so was my mind.

Anthony had his first surgery at 1 day old. The surgery itself went well, but the defect was much worse than they thought. He had virtually no diaphragm on his right side. Luckily his liver had prevented other organs from going into his chest, and he had a full lung on the left side and a half lung on the right. That was a lot more lung tissue the doctors would have predicted for such a large defect. This was great news. His first night post-op was very rough. The next morning the doctors began talking about ECMO. But a wonderful NICU neonatologist was patient. She said Anthony needed some time to recover from a very invasive surgery. She was right.

Eventually after a few weeks, Anthony was able to wean down on his ventilator. He did spend some time on the oscillator and nitric oxide. The oscillator really helped him. He spent 6 weeks in the NICU. He had a lot of trouble coming off the vent. Every time they tried, it would last a few hours and then his stats would drop. It was so frustrating. I remember one time when they tried; I was holding him, and I didn't want to let go. I didn't even realize that he was turning blue in my arms. It was as if he and I were the only two people in the world, and I couldn't hear the nurses trying to tell me he needed to go back on the vent. I guess I really didn't want to hear that.

After 7 weeks in the hospital, we brought Anthony home. Everything seemed to be great. I did begin to notice that he was turning quite blue when he cried and that he wasn't putting on any weight. We brought him for a checkup on July 31, 1996, with the surgeon and were informed that his hernia was back. They performed surgery on him that day and the roller coaster ride started again. This time he tolerated the repair very well. By the way, they inserted a Gortex patch inside his chest. I forgot to mention that earlier.

It was a few days after the surgery while he was in the PICU that I noticed a lump on his abdomen. It turned out to be a bowel obstruction and once again he needed to go under the knife. This time Anthony had a very rough time. It had only been a few days since the re-repair and his body didn't like being opened up again. He was bleeding very badly from his abdominal wound. This was the first time I saw a worried look in his surgeon's face. My husband and I prayed and prayed and prayed. We called our friends and family and asked that they start a prayer chain for our son. At the end of the day we went home with heavy hearts. That night we got a call at 4:00 am from the nurse, telling us that we should get to the hospital because they couldn't stop the bleeding. We rushed down there, and I sat by my son's bedside. I sang to him and read to him. My husband went to visit his father's gravesite and then to church. When he came back, Anthony began to make a turnaround. By the end of the day, Anthony's bleeding stopped. It was truly a miracle.

As a result of the surgery, Anthony had a colostomy for a few months. The doctor wanted to give his bowel some time to rest. We brought Anthony home in mid-August once again. This time he was great. No turning blue. He had his colostomy reversed in October and was home in 2 days. What a difference!

We just celebrated Anthony's 6th birthday last week. I can't believe it. He still sees his surgeon twice a year and gets an annual MRI to check his chest wall measurements. They think that at some point in the future he will need another surgery to replace the Gortex patch with a larger one. I try not to think about that too much, though. I just enjoy every minute I spend with him. He is in kindergarten and is thriving. He plays on the soccer and baseball teams in our town. I only dreamed of these days 6 years ago and now they're my reality. We also have a beautiful 4 1/2 year old daughter. I got pregnant with her when Anthony was only 9 months old. We really didn't plan it that way, and I was scared to death that something might be wrong with her, too. But she was born perfectly healthy. I'm glad I had her so soon after Anthony. It really helped me heal to know that we could have a healthy child and that I didn't do anything wrong.

God bless each and every one of you. We are all part of a family. We share a bond that can never be broken.



Written by Anthony's mom, Mary Iacobucci (Ohio)

November 26 - Dear Nicholas Sparks (Guest Blogger Shyra Houghton)

My name is Shyra Houghton and I was 21 weeks pregnant when my husband, Chris and I found out our baby boy was going to be born with a CDH. I had gotten a routine ultrasound at my OB's office. When they thought they saw the CDH, they sent us to a perinatal center at a large hospital in Atlanta. It of course turned out to be what they had expected. That was the day that Dr. Stone, the radiologist, informed us of what a CDH was and what to expect. We thought our lives had ended. We were so heartbroken. I will never forget that day as long as I live. I had an amniocentesis done to check for other abnormalities that day in the office which was a Thursday. I had to wait until Monday for the results. It was the longest weekend of my life. We prayed and cried until we were numb. Monday came and the amnio was fine. We were then told that I would have routine ultrasounds done every three weeks, and to get in touch with the neonatologist at Egleston Children's Hospital so that we could learn all that we possibly could. We did and Dr. Reese Clark, who now is at Duke University Hospital, gave us wonderful information and told us that he would be the neonatologist on rotation the month Mattson was to be born. We were shown a ECMO machine and how it works. We were taken to the NICU where he would be. We later toured the hospital where I was told that I needed to deliver. We meet a neonatologist from there who informed us of what they will be doing in order to save our son's life. We were also put in contact with a family whose son was a survivor of a CDH and was a ECMO baby. That was the best thing that happened to us. We learned more from that family than any doctor. From that point on we waited, got the nursery ready, had showers and prayed for the best. I was induced a week early, because they did not want to be surprised. This way the neonatal team was ready. I delivered 12 hours after I arrived at the hospital. Mattson was born and let out a small cry and then immediately put on the table and intubated. We watched in disbelieve and waited to hear what was going on. They worked on him for about 20 minutes and then the neonatologist told us that they would take him upstairs and do some more evaluations, but it did not look good. They took him up to they NICU and came down about and hour later and said they he would be transferred out to Egleston ASAP because he only had about a 20% chance. Chris went with Mattson at about 10 p.m that night and had to make some major decisions by himself and was told so many things to expect. At 7:30 the next morning. They called and told Chris that they were putting Mattson on ECMO and to get the hospital. Chris came to get me and took me to Egleston Children's Hospital at around 3 P.M. I handled it really well. I felt so empty though and so helpless because just 24 hours prior Mattson was a lively and active baby and now he lay there paralyzed with tubes stuck in every part of his body. He remained on ECMO for 7 ½ days and finally was taken off. He did fine and had his surgery on the 12th day. These days were filled with so many questions and answers and God only knows how you have the strength and the sanity to absorb all of it. I stayed at the hospital during the day, in which I pumped and stored my milk there. Everyone makes you feel so welcome and they are so helpful. Everyday when I walked in the NICU I was so relieved that I did not receive the dreaded phone call in the middle of the night. Mattson's surgery went really well, no patch was needed. Every day after that was filled with waiting. Ventilators were changed to high frequency and then back. He started feeding him and of course he began refluxing. Steroids were given. New tubes were put in. New IV's in his head. Lots and lots of bald spots. It was 16 days after he was born that I held my son. It was such a good feeling. Finally after 5 weeks Mattson was finally taken off the of the ventilator, after 3 or 4 attempts a few days prior. He was put on the oxygen and we finally were able to hold our baby and give him the love and affection that I know he was craving. We finally knew Mattson would be fine. We went to the step down unit in which I was able to stay in the room with him at all times. That's when I learned how to put the NG tube in and how to administer medicines and how to work all the equipment that we would be taking home. We finally took Mattson home when he turned 6 weeks old. I think I stood by his bed for the next 2 days, because he looked so good laying in his very on crib with his very on clothes on and his very on blankets and toys. He came home on oxygen, a feeding tube, and a heart monitor. I got Mattson to take a bottle after 4 days in which he did fine. I took the tube out after 6 days and put him on the bottle. When he turned 8 weeks old his intestines became blocked and we had to rush him to Egleston because he could not stop vomiting. We were admitted for 5 days and it did not require surgery, the blockage worked its way out. We went back home without the oxygen and he did fine. When he turned 4 months old he started have really bad vomiting spells where he would have something similar to a seizure. I started out with the pulmonologist and then went to the gastroenterologist - who recommend a head ultrasound. She thought Mattson's head was too big. I went straight to Egleston for an ultrasound which showed a great deal of fluid on Mattson's brain. He was Hydrocephalous. I was told by his pediatrician to go straight to the Neurologists office. I did and Mattson was admitted that afternoon and was scheduled for surgery the next day. A VP shunt was place into Mattson's head and we were told he would be every bit as normal as anyone else's child. He would live a normal life. The shunt will be permanent and need for his lifetime. At 6 months Mattson got RSV which put him in the hospital the day after Christmas for 6 days. This was horrible. He did not eat, wake up, or hardly move for days. It took him a good month to recover from the RSV and of course set him back in his development of his lungs. When Mattson was 21 months old his reflux flared back up to the point where he could not even laugh without vomiting. He had a hiatal hernia that had gotten bigger and could only be repaired with surgery. At 23 months old he had a fundoplication done and it was a great success, a hard stay in the hospital because it was very painful to him, but a great success. He is 35 months old and has been reflux free for almost a year and is a very healthy, normal and lively child. He has to have breathing treatment occasionally and go on steroids when he gets a bad cold or URI. We now have our second child, Anna, who is a very healthy 5 month old who adores her special brother and lights up when she sees him like everyone else does. We thank God everyday for giving us the special child and giving us all the strength that we needed. My mother was there every day with us and who thinks Mattson hung the moon. Our first two years with Mattson was filled with lots of doctor visits, cleaning up throw up, going to the emergency room (once by ambulance because his pulse ox was 70) crying and sleepless nights, but we all made it. When I found cherubs 3 months ago I was so relieved that this horrible birth defect was finally being recognized. I wished I had been able to read the stories of these cherubs, who are truly Gods little angels, so that I may have been able to get some advise or help when I so needed it. Dawn, you are a remarkable woman to have done this special thing for all these families. God bless you and your cherub. Good luck everyone and please do not hesitate to contact me for any advice that we may offer.



Written by Mattson's mom, Shyra Houghton (Georgia)

November 24 - Dear Nicholas Sparks (Guest Blogger Jackie Horn)

Dear Mr Sparks,

It was 10:02 pm on December 12, 1990 when Hannah made her grand entrance into this world, just seconds after the doctor arrived. After 2 sons, I was blessed with a daughter. My sister, Lu, was on a conference call to our mom and older sister, bragging about her new niece and how she practically single-handedly delivered the baby. Lu stood in as proxy for my husband who had recently suffered a serious knee injury that left him incapacitated. I couldn’t wait until things settled down so I could introduce Hanna to her father via the telephone. But some things weren’t meant to be. Hannah was in respiratory distress and she was whisked away for evaluation. Lu and I waited in silence. A short distance down the hall, in another birthing room, we heard an excited cry from a father who had just witnessed the birth of his son. His jubilant cry pierced my heart as I waited on word about my own daughter. The wait seemed forever but it was actually only 30 minutes before the pediatrician entered my room. I held my breath expecting the worst when the doctor took my hand in hers and spoke. "You have a very, very sick little girl. The x-rays show that Hannah has a diaphragmatic hernia. This means she has a hole in her diaphragm which allowed the intestines to move up into the chest cavity, hindering the growth of her left lung and caused displacement of her heart. We placed her on a ventilator and a helicopter was called to transport her to St. Louis Children’s Hospital for immediate surgery". In less than an hour the helicopter was gone, carrying my little girlie to the hospital. In the quiet of my room I called my husband and told him about his beautiful but very critical daughter as I gazed at the Polaroid given to me by the helicopter team. The dawn greeted me with a phone call from Hannah’s surgeon. He said, "She came through like a champ. Her condition is stable but very critical. We’ll just have to wait and see what happens in the next 48 hours". I thanked him and he told me that Hannah is a beautiful baby. That morning, I made my first of many trips to the Children’s Hospital. Hannah was an extension of wires and tubes. Her heart monitor begged for attention while her vent forced air into her lungs. Just seeing her like that left me emotionally exhausted. It was here that I introduced my husband to his daughter. It was very difficult to go home that night and leave my baby but I had to establish some degree of normalcy before my husband’s scheduled knee surgery the next morning. At 1:00 am, less than 24 hours after Hannah’s surgery, her doctor called to tell me that Hannah needed another surgery in order to sustain her life. ECMO would replace the work of her heart and lungs, allowing her own organs to rest. The side effects could include deafness, blindness, brain hemorrhage, even death. But this was our only hope. Family and friends babysat my sons, chauffeured me to the hospitals, brought food, cleaned my house, and stayed with me through the endless nights. The new week brought good news. Hannah was successfully weaned off ECMO and my husband was released from the hospital. Hannah depended less and less on the vent and on December 23rd, she was completely weaned off and breathing on her own. After a month in the hospital, Hannah came home. That was over four years ago and Hannah is doing Great. She walked before her first birthday and at 18 months, passed her neurological exam with flying colors. By three she was roller-blading and at four she rides her two-wheeler without training wheels. She has a passion for books and loves to read. She has a thirst for learning and enjoys doing her letters and simple math with our computer. This January she stared ballet and tap lessons. Some people think Hannah is quite amazing, I myself think she is quite normal. I attribute her quick learning to the fact that she tries to keep up with her older brothers. I thank god for sharing the miracle of Hannah with us. I’ll never forget the support, the prayers of Job (Job 42:10 The Lord restored his…happiness. In fact, the Lord gave him twice as much as before).


Written by Hannah's mom, Jackie Horn (Missouri)

November 22 - Dear Nicholas Sparks (Guest Blogger Rhonda Holsworth)

Dear Mr. Sparks,

Our son Brian Holsworth was born on January 17, 1989 with CDH. He was 2 months premature and weighed 3 pounds 15 ounces. He was born at John Muir Hospital in Walnut Creek, CA and immediately taken to Children’s Hospital in Oakland for surgery. I had to stay in the hospital after the birth, but the rest of the family went to Children’s Hospital with Brian during his surgery. It was hard not to be there with him and wonder if he would survive. I was glad to hear the news that he made it but the next few days would be critical. I was able to get out of the hospital the next day and visit Brian.

It was very scary watching our baby survive, but I never had any doubts of his strength to live. He continued to improve daily and luckily was only on the ventilator for one week. He was tube fed and able to tolerate breast milk and was then transferred back to John Muir Hospital after only 2 weeks. He spent another 2 ½ weeks at John Muir to gain weight, learn to suck and maintain his health. He left the hospital after 4 ½ weeks and he weighed 4 pounds 12 ounces. This was incredible considering he was 2 months premature and had CDH. Brian as an infant was diagnosed with mild Cerebral Palsy. He went through physical therapy weekly from about 6 months. He walked at 18 months. He continued Physical therapy for most of his life with various Orthopedics in his shoes. He continues to improve and we have decreased therapy to where we work with him at home and only visit the Therapist occasionally now. Brian is very athletic and it is a lot of work to stretch with Brian and keep him loose so he can continue to play sports well. We are constantly reminding him to think about how he walks so he can continue to improve himself. This is a tough reminder with some frustration.

Brian is a great athlete and has an incredible drive to excel in sports even though he is smaller than most kids his age. He currently plays basketball, baseball and golf. He made Scholar Athlete for Little League Baseball for the past 3 years, which means you have at least a 3.0 grade during baseball season. This year he made Little League Majors as an 11year old and had a 3.6 grade point average. He also made the 11-year-old all-star team for Canyon Creek Little League. We are very proud of Brian, he has overcome a lot and has to work a lot harder than most kids in school and sports. He has a great attitude and a big heart and I believe this is what has got him this far starting from day one. Brian is the oldest of our 3 children. Brian is 11, Kyle is 9 and Alyssa is 5.


Written by Brian’s mom, Rhonda Holsworth (California)

November 15 - Dear Nicholas Sparks (Guest Blogger Tammy Sincavage)

Dear Mr. Sparks,

 This is the story of Trent Montgomery Sincavage. I would like to dedicate this story to all of Trent's doctors and nurses. Trent was born on April 14, 1999 at 6:05pm. I only got to see him for a second and he was taken to the resuscitation table. Next thing I know the NICU team, at the Reading Hospital, was working on him. My husband, Jim and I were told he was very sick and could possibly have a heart condition. An hour went by and the Neonatologist, Dr. Wirth, came into my room and explained that Trent had a Congenital Diaphragmatic Hernia, and that he needed to be treated at the Hershey Medical Center. He told Jim and me that Life Lion would be at Reading within 30 minutes. All I can remember thinking was Trent needed to be baptized. Dr. Wirth did make a point to tell Jim and me that a NICU nurse, Trisha, had diagnosed Trent within minutes of my delivery and that he was very proud of her. I will never forget what Trisha and Dr. Wirth did for me and my husband, not to mention Trent. Trent was baptized before he flew to Hershey. As soon as the baptism was finished the Life Lion staff prepared Trent to leave. Trent was very feisty that night. He kept pulling at his tubes, they finally had to tie his arms down.

I was discharged from the Reading Hospital within 14 hours after delivery and my husband and I drove to Hershey. When we arrived at Hershey, Trent was very stable. His nurses and Doctors spoke to us and told us of things that could possibly happen. I remember staying with Trent the entire day not wanting to leave, but I knew I had to take care of myself to be strong for Trent. My husband and I stayed near the hospital and I was able to sleep that night. I'll never forget the sound of the phone ringing at 7AM on April 16th. I leaped out of bed, answered the phone and it was the NICU unit. Trent had severe pulmonary hypertension, the nitric oxide failed and his only hope was ECMO or he would die. My husband and I raced to the hospital we got to see Trent before his surgery and through my tears a nurse laid her hand on mine and said, "it will be okay". My husband and I then left the NICU unit.

The pastor from our church soon arrived and he kept Jim and I calm. He said to me, "what do you see in Trent's future?" I thought about it and I said, "I see three black belts." (Trent has 2 older brothers Alex, 9 and Harrison, 5. Alex and Harrison take Karate lessons and both are working toward their black belts) I could really see Trent with his black belt! That thought made me smile and somehow I found an inner peace.

After the ECMO procedure was done, Dr. Cilley spoke to Jim and me. He told us Trent made it through and explained what ECMO would do for Trent's lungs. He told us Trent's primary diagnosis was severe pulmonary hypertension and the CDH was secondary. Dr. Cilley gave us the cold hard facts of the battle Trent faced. I needed that, I needed him to be straightforward with us and he was. I felt that inner peace again. Trent was on ECMO for 10 days. He was decannulated on April 26, 1999. Trent was placed back on the ventilator. The next 3 days were very rocky. Jim and I didn't leave his side. I remember the neonatologist, Dr. Marks telling Dr. Dillon, the surgeon "he needs his repair" and Dr. Dillon would say," we will wait to Friday." Indeed the surgeons waited until Friday, they knew what was best for Trent.

Friday, April 30, 1999 Dr. Dillon repaired Trent's hernia. The surgery took a little over 4 hours. I never prayed so hard in all my life. My husband was a wreck and I was strong (totally opposite of when Trent went on ECMO). I knew at this point it was up to God to handle, all I had to do was trust in him. When Dr. Dillon finished the surgery he spoke with Jim and me. He told us that Trent. did well and he was on the ventilator, however he may need to be put on nitric oxide and the oscillator. The repair was made with his own tissue. His left lung is very tiny, because he has two spleens and one of his spleens grew where the lung should have grown.

Later that day Trent went on the oscillator and N.O. He became very ill. The doctors suspected that the pulmonary hypertension was back, so tests were ordered, but there wasn't any pulmonary hypertension. So perhaps he had an infection, so they gave him antibiotics, but it didn't help. Jim and I were standing by Trent when the Neonatologist, Dr. Marks came and told us we were up against a wall----but there was still some room to move. I remember yelling at God that day. I told God that he was wrong and it wasn't Trent's time to go, I was really mad. I did manage to calm down and I did find the inner peace again. I knew yelling and acting like a mad person wasn't going to help anyone. The doctors and nurses were doing all they could and I knew that. On the evening of May 4th we finally left the hospital (after reading Trent "Goodnight Moon" - he was read that book every night). My husband and I went back to the Ronald McDonald House and I thought for sure we would receive a call that night from NICU. I fell asleep and it was the deepest sleep, and during my sleep a miracle happened. I woke at 7am and immediately called NICU, Trent's nurse was delighted to tell me that he had a great night! I couldn't believe it, Jim and I were so happy. I sure do believe in miracles!

On May 10th I held Trent for the first time. He was still intubated so he had to lay on a pillow. Jim was not with me, he was home with Alex and Harrison. I had Trent all to myself, what a day. On May 11th Jim held him for the first time and then he gave Trent to me. While holding him I noticed his tube was really moving around and Trent was gagging, he had managed to partially pull his tube out! Trent was extubated and put on oxygen. Jim and I started going home at this point. We lived an hour from Hershey, so one of us would stay in Hershey and one of us would go home to Alex and Harrison. While I was at home on May 14th, NICU called, it was Trent's nurse, Martina, calling to tell me that Trent was breathing room air. This was another great day.

The next issue for Trent would be learning to eat. He was given an NJ tube, he really didn't like that, he kept pulling it out. (Needed to tie his hands down again!) Trent had a lot of reflux and was put on medication, which did help.

Trent was discharged from Hershey on 5/27/99. Before he was discharged I had everyone who was involved with Trent sign a t-shirt, given to Trent by the Life Lion Crew. The t-shirt has a picture of Life Lion and it reads "I flew on the Lion". The shirt is filled with over 30 signatures and hangs proudly in Trent’s bedroom.

Trent was readmitted to Hershey in June for 3 days, he had a difficult time with drug withdrawal. By the end of July 1999 he was drug free. Trent is now 16 months old. He is currently receiving physical therapy. He is tolerating food and no longer uses a bottle! He is also part of the Children's Miracle Network.

I would like to thank several people: Alex and Harrison for being the best big brothers to Trent. My neighbors, Bob and Nancy Moore, who opened their hearts and home to Alex and Harrison. (they took care of Alex and Harrison for two weeks while Jim and I stayed in Hershey.) Jim's family and my family for all their support. Our church & all of our friends for their support. The NICU staff at the Reading Hospital, especially Trisha and Dr. Wirth. The entire NICU staff and the entire pediatric staff at Hershey, especially Trent's primary nurses Jeanie D. and Larissa, the Neonatologists, Dr. Mallow, Dr. Marks, Dr. Waterberg and the Pediatric Surgeon's, Dr. Dillon and Dr. Cilley. Donna and Tammy for making Jim and me laugh! Most of all God for giving us Trent.

Even though there were really difficult days, there were also great days, something good did come out of all this, Jim and I did make a lot of new friends and I was able to find courage and inner peace in myself that I didn't know I had. God Bless us all.


Sincerely,
Trent's mom, Tammy Sincavage (Pennsylvania)

November 14 - Dear Nicholas Sparks (Guest Blogger Tammy Higgins)

Dear Mr. Sparks,

Hello. My name is Tammy Higgins, and my story is about my daughter Rebecca. I didn't find out about Becky's condition until my thirty-sixth week of pregnancy. My pregnancy was typical, so I thought, but I didn't really feel much fetal movement, and my stomach measured much larger than the normal. I was told I was having a ten or eleven pound baby.

When I went for my 20-week ultrasound, the girl doing the ultrasound detected no fluid in the fetus’s stomach. I returned the next day, and they said that they did detect some fluid. I was very relieved and ecstatic that I was having a little girl. I had wanted a child for as long as I could remember, and I felt that all of my dreams were becoming a reality.

I didn't really worry anymore because the Ob-gyn kept indicating that all was fine, and I was only twenty-two years old. I went on to have my perfect baby shower, and I received the perfect baby gifts for my perfect baby girl. I went for a second ultrasound just before Halloween because I was measuring so large. The hernia was detected.

The hospital that I had been attending was not able to handle my situation, so they referred me to the Columbia Presbyterian Babies Hospital in NYC. The hospital seemed so big and cold at first but now is my security blanket. They were wonderful to me and my child. Rebecca was born by vaginal birth on November 4, 1998. She was perfect. She weighed six pounds one ounce and was 20 inches long. She was whisked away from me and brought to the NICU. She was placed on a respirator. She was doing well. Her surgery took place when she was two days old, and the surgeon said her hole was the size of a silver dollar. He patched it with gortex and moved her intestines back down, and she was doing well. When we went to see her, her little legs were all dusky blue, and she looked to be in so much pain.

Shortly after the surgery I held her. She was so tiny and so cute. I felt that she and I would fight. And she would live. She had so much gumption. She would pull the IV's out and thrash her arms. She recovered from the surgery, and then it was determined she had reflux. She was released from the hospital the day before Thanksgiving. She was three weeks old.

We battled reflux for approximately a year, and she still will occasionally vomit. She is now a very strong-willed and stubborn two and a half year old. She amazes me everyday. My world would have never been the same without her; she is what I live and breathe for.

Now my husband and I are trying to have a second child, and I have to admit I am very nervous, but I would love nothing more than to make my Becky a big sister. God bless all of the little cherubs wherever they may be.


Sincerely,
Rebecca's Mom, Tammy Higgins (New Jersey)

November 13 - Dear Nicholas Sparks (Guest Blogger Kim Schultz)

Dear Mr. Sparks,

Our lives changed forever on September 21, 2000, when I took a pregnancy test and it was positive. We were so excited to finally start our own family. Everything progressed normally during the early stages of the pregnancy. I was exhausted and experienced morning sickness. On December 5, 2000, I went to the doctors and took my AFP test. Ten days later the doctor's office called to say the results of the test were abnormal. They said not to worry, that 10 out of every 100 tests came out abnormal and only one of those 10 had a problem. I went back to the doctor on December 28 for an ultrasound. We had our ultrasound, and the due date was three weeks off of what I originally had. He decided to send us to another hospital in our area to have a level II ultrasound done.

On January 5 (19 weeks pregnant), we had the level II ultrasound. We decided not to find out the sex of the baby. The ultrasound lasted about 45 minutes and then the technician left the room to review the results with the doctor. About ten minutes later they returned, and the doctor introduced himself. As of that moment, our lives took a turn that will impact us forever. He immediately told us they found a problem with the baby. The baby had a congenital diaphragmatic hernia. He explained what it meant and explained that there were hospitals that offered in utero surgery as an option and that we needed to have an amnio done to rule out any chromosomal abnormalities. We agreed to do the amnio. They then took us back in to meet with the genetic counselor. This is when we learned they felt the baby had Trisomy 18. The baby had what looked like a heart defect, was behind in growth, clubbed feet, clinched fists and a two-vessel umbilical cord. We were devastated. She told us that the chances of carrying to term were not very good, and we would probably lose the baby.

Ten days after the amnio was done, we got the results. They were normal. We were ecstatic. It gave us renewed hope. We went back for another ultrasound on January 22. We found out we were having a little girl. We decided that with the serious defect we were facing, we needed an identity for our baby. We talked about the in utero surgery option, and on February 12 (25 weeks pregnant), we ended up at the Children's Hospital in Philadelphia. After a day of tests, it was finally time to meet with the team of doctors. They sat us down and told us that after reviewing all the tests, they felt our daughter's condition was fatal. She had the diaphragmatic hernia that was severe (her lung to head ratio was 0., along with all the other defects they found in the first ultrasound. We went home crushed.

Over the course of the following months, we saw many specialists, and we received the same opinion every time. There was nothing that could be done. She would not survive long enough to go home with us. We continued on with the pregnancy, prayed, and felt is was our duty as her parents to give her the best chance possible. On May 23, 2001, we went to the hospital for our induction. Due to the team of doctors we had met and arranged to be with us at delivery and the fact that the hospital was one hour away, we felt this was the best. We were 39 weeks, 1 day pregnant. I was actually in labor when we arrived and did not even know it. They started the IV and the induction drugs. It was around 8 p.m. The next morning the doctor came in and broke my water and started my epidural. Things were progressing very slowly.

Then the baby's heartbeat started to drop with the contractions. They stopped the pitocin, and her heartbeat did get better, but my contractions were not regular. The doctor came in and told us he felt she might not survive labor. He felt the only way we would be able to hold our daughter alive was if we had a c-section. We agreed. The c-section was going to be performed in the NICU where the team of doctors was waiting. At 2:42 p.m. on May 24, 2001, Madison Lillian entered the world. She was alive. She was immediately taken and put on a ventilator. I told Shane to go and be with Madison. They did an echocardiogram of her chest and took blood gases. When the results came back, it was just as we had been told. Her defects were too severe. She did not have enough lung tissue to breathe on her own. We decided to take her off the vent and spend as much time with her as we could.

Two hours after she was born and 30 minutes after we got to hold her for the first time, Madison left this life in her Daddy's arms. In that short time, we were able to have her baptized. We kept Madison for another 6½ hours that night. Our family and friends were able to see and hold her. One of the hardest things Shane and I have ever had to do was to leave the hospital a day and a half later by ourselves. Six days later, on our due date, May 30, we buried our daughter. Madison changed our lives forever and has taught us more about life than anyone ever could. Even if we had known from the beginning the outcome, we would do it all over again. Madison was worth it all. She spent a moment in our arms; she'll spend forever in our hearts.

Sincerely,
Madison's mom, Kim Schultz (Ohio)

November 12 - Dear Nicholas Sparks (Guest Blogger Vickie Henze)

Dear Mr. Sparks,

My husband and I got married in April 1995. He already had two children from a previous marriage, but we knew we wanted to have at least one together. We decided to have a year for us before we started trying. In May 1996, we found out we were expecting. We were so excited and never dreamed it would happen so quickly. At about seven weeks, I spotted. I immediately called the doctor and was told to come in. They did some blood work and examined me. They did a vaginal ultrasound and confirmed that there was a heartbeat and that there didn’t appear to be any problem. My doctor did notice that I had a couple of fibroid tumors, and he told me they would just watch those closely to make sure they didn't grow too much. He said this would be checked through ultrasounds.

After this small scare, things moved along smoothly. At my second ultrasound at 18 weeks, we decided to find out the sex. A boy- we were thrilled. We decided to name him Jacob. At my third ultrasound at 26 weeks, the doctor did indicate that I appeared to have a little bit higher than normal amniotic fluid, but it wasn't high enough to worry about at that point- they would just keep an eye on it. Now I know that was an indication that there might be a problem- then I had no idea and totally trusted what the doctor said. Throughout my pregnancy, I had a total of four ultrasounds, with the last one at 34 weeks. Each time I was assured that everything looked fine.

My due date was January 19, 1997. The week after Christmas, my legs, ankles, and feet started swelling extremely badly, so much so that the doctor decided I needed to quit work and stay home. So my maternity leave from work started about two weeks earlier than expected. Jacob was also still in the breech position at this time (again, now I know that this is another indication that there might be a problem). The doctor talked to me about trying to get him to turn by doing a procedure where they push on him, but I decided against this and was then told I would need to have a C-section if he didn't turn on his own. Jacob never did turn, so we scheduled a C-section for January 20, 1997. I could not wait for this day to arrive. I was so big and miserable by this time, but I just thought that's how all women who were nine-months-pregnant felt.

Jacob Nelson Henze was delivered by C-section at 8:03 a.m. on January 20, 1997. He weighed 8 lbs 4 oz.- a full term, good sized baby. Immediately, I knew something was wrong when he didn't cry. We heard a whimper but no cry. I kept asking my husband why he wasn't crying, and he just kept saying they were working on him. The OR got extremely busy with doctors and nurses. They put him in an incubator, stopped him by my head for one second and whisked him away. I had no idea what was happening.

They asked my husband to stay with me while they finished working on me. They then took us to the recovery room. The nurse that was with me was so sweet and kept telling me that a lot of C-section babies have some fluid in their lungs and not to worry, everything would be OK. The next thing I remember is one doctor standing beside me and two standing at the foot of my bed telling me that Jacob was a very sick little boy. They explained he had a right-sided congenital diaphragmatic hernia. His liver and intestines were up in his right chest cavity, and they didn't know how much lung, if any, was on the right side. He needed surgery immediately to repair the hernia and move everything back into place. Glenn, my husband, and I were numb. They had gotten him stabilized, and they wanted our consent to do the surgery. So two hours after he was born, Jacob was in surgery having his hernia repaired. The surgery went great. They moved everything back to where it was supposed to be and used a Gore-Tex patch to close the hernia. He was on a ventilator and was still in critical condition. Then they started talking to us about ECMO. If they couldn't control the pulmonary hypertension, then ECMO would be our next step. I was still flat on my back from the C-section and only had pictures that the NICU nurses had sent up to me by my husband. I could never have imagined that a baby could have that many tubes and wires attached to him.

The day turned into night and Jacob was holding his own. Our other family members went home, and Glenn and I settled in to try and get some rest. Glenn had spent most of the day down in the NICU, and he was exhausted. At 1:30 a.m., the phone rang, and to this day I can still hear the NICU doctor say, "Jacob has taken a turn for the worse. I need your husband to come to the NICU immediately." Glenn ran to the NICU. I was hysterical and called the nurse. The nurse that was on duty was an angel. I know God placed her there that night to be with me. She came in and told me she would get me down to the NICU no matter what it took. She gave me a shot of morphine, and put me in a wheelchair. At that point, I couldn't feel any of my own pain, other than my heart breaking. I just wanted to get to Jacob. She stayed right with me the whole time.

When we got down to the NICU, and I saw Jacob for the first time, all I could see was a beautiful little boy who was my child and was so sick. So many wires and tubes and blinking lights and bleeping monitors – it was so overwhelming. They told me it was OK to touch his arm and hand. I touched him, talked to him and told him that his daddy and I were with him. After a few minutes, the doctor said he had to talk to us. Jacob was very ill and needed ECMO. Our local Children's Hospital in Birmingham didn't have an available ECMO bed. They were contacting hospitals in Georgia, Tennessee, Arkansas and Louisiana. He would have to be life-flighted by jet to the closest hospital that had an available ECMO bed. But he wasn't even sure if Jacob would survive the flight. He suggested that we might want to have Jacob baptized before he left. I called my parents and asked them to contact our preacher. At 2:30 a.m. on January 21, 1997, Jacob was baptized in the NICU of St. Vincent's Hospital, and I was trying to prepare myself for the worst.

The doctor advised us that they had found an available ECMO bed at Vanderbilt Children's Hospital in Nashville, Tennessee, and they were waiting on Jacob. The South Carolina Transport team arrived to fly him to Nashville. They were extremely sympathetic and supportive. They assured us they would take good care of Jacob and gave me several pictures of him before they left. I said my goodbyes to Jacob and told him I would see him in Nashville in a couple of days- his daddy would be up the next day. Watching them wheel Jacob away was the hardest thing I've ever been through because I didn't know if I would ever see him alive again.

We received the call from the doctor at Vanderbilt that Jacob had arrived and was stable. He discussed ECMO with us again, and we gave our consent to place Jacob on ECMO. After this had been done successfully, they called us back to let us know. My husband took off for Nashville to be with Jacob. Jacob's nurse called me to let me know she was caring for Jacob and would take good care of him and for me to call her anytime. Glenn arrived in Nashville on Tuesday night- Jacob remained stable. I was finally able to leave the hospital on Thursday morning and my parents, my sister, brother-in-law and I headed for Nashville. I was still extremely sore and not able to get around very well, but at this point that was the least of my worries.

Due to another child being on ECMO in the PICU, Jacob was placed in the PICU instead of the NICU. When I saw him for the first time I was overcome with a variety of emotions. I was so thankful that he was alive, but my first look at him on ECMO scared me to death. There were so many machines and wires and tubes hooked to him, plus there was no sign that he was breathing. His nurse was wonderful and explained everything to me what all the machines were doing what all the tubes and monitors were for that the ECMO was giving his lungs a rest and was oxygenating his blood it was all truly overwhelming.

Jacob did well on ECMO. They did the first trial off after six days, but he wasn't quite ready. They tried again on the 7th day, and he was able to come off. So we had surpassed our first hurdle. He was still on a ventilator but still doing well. We were able to touch and talk to him more. He was aware of his surroundings, and I know he knew that we were there. About three days off ECMO, I walked into the PICU, and there was a rocking chair next to Jacob's bed. The nurse told me to sit down she had a surprise. She started gathering up all the wires and bundling up Jacob next thing I knew he was in my arms I was finally holding my son after ten days. It was wonderful! a little scary with all the wires and tube but wonderful!

Also during the second week, Jacob came off the ventilator. When I first heard him cry, it was the sweetest sound I had ever heard, and I cried along with him. What a miracle to hear that sweet voice. Jacob was able to stay off the ventilator for two days, but his blood gases didn't stay at acceptable levels and after two days he had to go back on the ventilator. I felt like we had made a huge step backwards. But the doctors and nurses were very comforting and reassuring and helped us see that Jacob just needed to get stronger. I must say he is definitely a fighter.

The next day, Jacob decided to extubate himself. I guess he was tired of that tube down his throat. So the doctor advised they would try C-PAP. Jacob did well on C-PAP for four days. So well, that it was decided that Jacob was at a point that he could be transferred back to St. Vincent's Hospital in Birmingham. They had a NICU and were well-equipped to handle his care from that point on they had saved his life when he was born. We were thrilled it would be so nice to be back home. We were scheduled to make the transport on Friday, February 14 what a wonderful Valentine's present. That morning I was holding Jacob his nurse was preparing all the paperwork, and we were waiting for the transport team to arrive it was an exciting day. As I was holding Jacob, he stopped breathing. The monitors started wailing, and the nurse came running. After a couple of shakes, Jacob started breathing again we thought one episode nothing serious well, not so. Over the next hour, Jacob had three more of these episodes. The transport team arrived and they were told about the situation. We were asked to leave while the doctor examined Jacob, and they all reviewed the situation. I was in shock. After about another hour, we were called in to meet with the doctor. They weren't sure what was causing the apnea spells but because of them, they had to put Jacob back on the ventilator, and they felt he wasn't stable enough at this point to transport. We were staying at Vanderbilt. Again, we had suffered another setback.

Over the next week, Jacob stayed somewhat stable on the ventilator, but he continued to have a few episodes of stopping breathing even while on the ventilator. A week and two days after the first apnea spell, they took him off the ventilator. But after about 12 hours, he went back on. After running a variety of tests, the doctor met with us and said he felt like they had determined the cause of the apnea spells. He was being fed breast milk through an NG tube – during these feedings or shortly after, he was refluxing so bad that it was causing him to stop breathing. They felt that the only way to stop this was through surgery. They wanted to do a fundoplication and put in a G-tube (feeding tube directly into his stomach). Again, this was all so overwhelming but we trusted them to do what was best for Jacob. The surgery was scheduled and done the next day. Jacob came through the surgery fine. I'll never forget what the doctor said to me when he came to talk to us after surgery he told us what they had done and that Jacob did well then he looked straight into my eyes and said, "I truly believe Jacob is going to come through all of this fine and be OK." It was the first time anyone had said they thought Jacob would make it.

Two days after surgery, Jacob came off the ventilator for good. He was put on oxygen nasal canulas. Six days after the surgery, Jacob was transported back to Birmingham to St. Vincent's Hospital. Finally after six weeks in Nashville, we were back in Birmingham.

Back in Birmingham, we settled into a routine. My husband went back to work, and my mom and I spent the days at the hospital with Jacob. Glenn would come to the hospital after work, and we'd stay with Jacob until we had to leave. It was nice to be back home.Our next step was to get Jacob home.

Jacob stayed in St. Vincent's NICU for 4½ weeks. During this time, he remained on oxygen, but we worked at slowly lowering the amount he needed. A button was put in on his g-tube we learned how to feed him through this. Due to his rapid breathing and continuing need for oxygen, they didn't feel that I should attempt to breastfeed him. That's really the only issue I wish I had pushed a little harder, but I trusted the doctor's judgment. I was still pumping breast milk for him, and he was getting it though his g-tube. Regular attempts were made to get him to take a bottle, but he wanted nothing to do with it. We knew this was something we would have to continue to work on for a while. While at St Vincent's he also had inguinal hernia surgery, and his circumcision was done with this surgery. This surgery was tough because we knew he would have to be placed back on the ventilator, and we weren't sure how he would react when removed. Jacob did wonderfully with the surgery and had no problem at all coming off the ventilator.

One week and five days after this last surgery, Jacob was able to come home. Eleven weeks after his birth, we were finally bringing our son home. We knew Jacob was truly a miracle from God.

Granted, Jacob' homecoming was far from a normal homecoming. We went home with an apnea monitor, a pulse oximeter, oxygen and with a feeding tube in. St. Vincent's did a wonderful job of training us how to use and read all of these machines. A week prior to leaving St. Vincent's, we were placed in a private room so that we could learn how to care for Jacob. We knew we had a long road ahead of us, but we were willing to do whatever it took, and we were so thankful to have the blessing of Jacob as our son.

A week and a half after we got home, we were back in Children's Hospital Jacob had pneumonia. Luckily they were able to treat it with intravenous antibiotics, and we were back home after a week's stay.

For the next few months, we continued to try to get Jacob to eat by mouth. We worked with physical therapists and occupational therapists. Due to his time in the hospital, he had developmental delays. We were able to get Jacob into our county's Early Intervention Program, which is supported by the United Way. I cannot even begin to say enough good things about this program. We were able to work with a physical therapist and an occupational therapist on a weekly basis and a nutritionist on a monthly basis. Not only did they work with Jacob, but they provided tremendous emotional support to our whole family. Jacob was able to make tremendous strides in this program. Slowly, he started taking more food by mouth, and we were able to cut back on the tube feedings.

In October 1997, Jacob was able to come off the oxygen during the day he still remained on it at night. On December 22, 1997, Jacob came off oxygen completely. What a perfect Christmas present! Jacob continued to make strides with leaps and bounds. We had our setbacks, but we also had major victories. He was able to overcome all of his delays and is a very bright and smart child. In August 1998, his g-tube button was removed. He has been in the hospital twice with stomach problems. Whenever he gets a cold or cough, we jump on it quickly to be on the safe side. Jacob has a wonderful pediatrician who is very in tune with what he has been through. Jacob has endured respegam treatments and synagis shots. In March 1999, his diaphragm re-herniated, and he had to have repair surgery again. The same surgeon who did his first repair surgery at two hours old also performed the second surgery. This time he was able to use Jacob's own tissue to repair the hernia, so we're hoping that will be the last repair he needs.

As of this writing, Jacob is five years old and is a normal, happy, healthy kid. His is still a little smaller than the other kids in his class, but this doesn't stop him one bit. He is very smart and has the memory of an elephant his favorite animal. The only doctor we visit on a regular basis is his pulmonologist about every four months. He has no breathing problems, and she has placed no limitations on Jacob at all. We know he has a small right lung, but he leads a normal life. Jacob has been attending a daycare/pre-kindergarten program at our church for the past two years and will begin kindergarten in the fall of 2002.

What a miracle and a true blessing from God we have in our son Jacob. I look at him now and it's hard to believe he had such a rough start in life. Sometimes I think back to that first year and wonder how we ever made it through. I know I could have never made it without the support of my husband and my parents and the rest of our family. My parents have been there with us every step of the way and stepped in and took care of Jacob when I had to return to work. I sincerely don't know how we would have made it through this without them. Jacob also had wonderful care from the moment he was born. St. Vincent's Hospital and Vanderbilt Children's Hospital took excellent care of Jacob. His doctors, surgeons, and nurses were all wonderful, caring professionals. I also know that Jacob is a miracle given to us by God. Jacob has had so many people praying for him. From the moment he was born, prayer chains were started that reached across the country. Without our faith and trust in the Lord, we would have never made it through this and we are so cognizant and thankful every day for the miracle that He has given us in Jacob.