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 29 - Dear Nicholas Sparks (Guest Blogger Jay Sum)

Dear Mr. Sparks,

The Lord lives. The Lord is good all the time. My faith and hope are in God. He knows what is best for us if we let Him work in us. I thank God for the wonderful daughter that was given to us. Her name was Haley Elizabeth. She was a beautiful baby who came into this world on March 1, 2001, at 5:06 P.M., weighing 6 lbs. 12 oz. at Northside Hospital in Atlanta, Georgia. She came into this world “crying” just as any other newborn. She looked perfectly normal on the outside. However, the inside of her was not right. She had a condition called a congenital diaphragmatic hernia (CDH), which caused her stomach and part of her intestines to move up into her chest. This did not allow her left lung to fully develop. We had found out about this condition two weeks earlier, but the doctors (pediatric surgeon, OB, and perinatologist) were all very hopeful that they would be able to correct this problem.

Almost immediately after Haley was born, the neonatology team went to work on her to help her breathe with the one good lung (right lung) that she had by putting her on a respirator. The team then took Haley upstairs to the NICU to “stabilize” her.

At around 7:30 P.M., Joan Maples, the nurse who had been with us since 8:00 A.M. that morning to help deliver Haley, contacted the NICU. Joan indicated to us that Haley would have to be transported by ambulance to Egleston Children’s Hospital, which is about 30 minutes south of Northside Hospital. However, Joan did tell us that they would bring Haley to Robin’s room to see us before she was transported to this other hospital. We waited with eager anticipation to see her, and I was hopeful that her condition was good because the neonatologist explained to me earlier in the day that it could have taken a long time (24 hours or more) for her to be “stabilized” before she could be moved so that she could survive the trip. At that time, I thought this was “good” because she was to be moved so soon after her birth.

Finally at around 8:30 P.M., Haley was brought down to Robin’s hospital room and then taken afterwards to Egelston by ambulance. I followed her to the hospital to ensure that she made it there safely. Once I made it to the hospital, I found my way to the NICU. One of the nurses directed me down to the admissions office, where I had to complete the obligatory insurance paperwork. After this, I went back upstairs to the NICU. The nurse told me that the doctors were not finished evaluating Haley, so I went into the waiting room at around 10:00 P.M.

At 11:00 P.M. or so that night, the doctors came to me and asked if I wanted to see Haley. I was somewhat nervous but excited and went to see her. She was connected to a respirator and a bunch of other tubes. One of the nurses told me at that time that Haley was “very, very sick..” This sort of surprised me, because I knew there was a problem and thought that she was referring to the CDH. However, the tone of her voice made it sound much more serious. The doctor (Dr. Anthony Piazza) who examined Haley then came to me and wanted to talk to me and Robin immediately. I explained to him that Robin was still at Northside Hospital recuperating. Because Robin was in no condition to travel, I asked him if this could wait until the morning, and he said, “No.” I think at that time, I went into a state of “shock,” because I sort of sensed that the things he was going to tell us were not positive. Dr. Piazza and the nurses then led me into a private consultation room where we called Robin. The first thing that Dr. Piazza asked us was, “What did the other doctors tell you?” At first, I didn’t really understand why he was asking this and didn’t know how to answer. I thought to myself, “The perinatologist said that Haley would be fine; don’t you already know this?” Dr. Piazza then went on to explain to us that not only did Haley have the CDH, but she also had a problem with her heart. When I heard this, I don’t think that I wanted to believe it. “No one told us this before…,” I thought. The doctor then explained that because Haley had both conditions (the problem with the diaphragmatic hernia and heart) there was nothing more that they could do. Haley would not be able to survive on her own, and it was only a matter of time…

I then asked Dr. Piazza if Haley would make it through the night so that Robin could see her. Dr. Piazza indicated that she probably would be OK. Naively, I thought to myself, “Maybe things will turn around, and she will be better in the morning.” I didn’t really know what to do. I felt helpless because I couldn’t fix it or change the situation. After this, I went back to Haley and prayed with her and dedicated her to the Lord. I told her that Mommy, Emily and Daddy loved her. I then drove back to Northside Hospital around 1:00 A.M. to be with Robin. On the way back to Northside Hospital, I listened to a song called “Enchanted,” which I dedicated to Haley.

Haley had taken a turn for the worse early in the morning, and the NICU team had to revive her. Robin and I went to the hospital to be with Haley at around 6:30 A.M. but did not know what to expect. When we got there, even though she was connected to the respirator, she looked very good. I asked Dr. Piazza again if there was anything that could be done, and again he told me that it was “inevitable” and only a matter of time. The doctor then asked if we wanted to hold Haley. At the time, I didn’t want to, because I didn’t want to hurt her… But I did end up holding her for several hours and was so glad that I did. Even though it was very hard, I was grateful that I could be with my daughter at that time. We were able to pray, sing, and read some children’s books to her. I really believe that little Haley knew that her mommy and daddy were there and that we loved her.

At around 11:00 A.M., Friday March 2, 2001, Haley went to be with the Lord. At that moment even though the sorrow Robin and I felt was insurmountable, I felt somewhat at peace and very grateful that I was able to spend the time that I did with her and to be able to hold her.

“And He shall wipe away every tear from their eyes; and there shall no longer be any death; there shall no longer be any mourning, or crying, or pain; the first things have passed away” (Revelation 21:4).


Written by Haley's dad, Jay Sum (Georgia)

November 28 - Dear Nicholas Sparks (Guest Blogger Michelle Hudson)

Dear Nicholas Sparks,

Our daughter Samantha was born on March 21, 2000, one day shy of my actual due date. She weighed 7 pounds 6.5 ounces and was 21 inches long. I had been having contractions for the past 5 weeks so the doctor decided to go ahead and induce me. After finding out that my daughter had CDH on January 4, 2000, I was a little hesitant about what would happen after she was born, but I wanted to go ahead and do it, the waiting was killing us. My parents and in-laws were great. They all made sure our 3-year-old son was okay and taken care of. 6 hours after the doctor decided to induce, our daughter Samantha was born. She let out a little cry and was rushed to the incubator. There, with a total of 9 doctors and nurses there just for her, she was intubated. They let my husband and I touch her through the incubator and rushed out the door and to the Children’s Hospital that was attached by tunnel to the hospital she was delivered in. Two hours later we got to go and see her. It was the hardest thing I have ever had to do. Seeing one of your children hurt is the worst possible feeling. Samantha was put on ECMO when she was 22 hours old, her heartbeat was 205. Day 5 on ECMO they decided to go ahead and repair her hernia. With the blood thinner medicine it was risky, but with her being stable, this would be the best time. On day 6, she was 7 days old; they had to open her back up because her legs were purple and swollen. There wasn’t any blood circulating to her legs. The surgeon told us it was because everything was in the stomach area now and wouldn’t let blood pass. He said they would possibly have to put in a gortex patch to make the stomach area bigger. Once they got inside they noticed her stomach was filled with blood and fluid, they left a suction drain tube and didn’t have to put in the patch after all. She had hypertension, this was keeping her on ECMO longer than they wanted, but on day 14 they decided it was time, she went through 2 circuits. Once we graduated to the progressive side we worked mainly on feeding issues. She had reflux so bad nothing would stay down. After weeks of trying on May 5, 2000 she had her 5th, and so far final surgery, to get a G-button and the Fundo wrap. This allowed us to feed her through a tube placed directly in her stomach, and the Fundo kept her from throwing up her food. Four days later, On May 10th, after 7 weeks and 1 day in the hospital Samantha got to come home!

Today Samantha is 4½ months old and still has feeding problems. We are doing all feeds through her G-button because she won’t eat by mouth. She is not aspirating; she just doesn’t want to eat and gags when we try, and she is on blood pressure medication to treat the hypertension. She is on track developmentally and physically and by looking at her you would never know what happened to her. She smiles all the time and makes everyone’s day. She is truly our family’s miracle baby.


Written by Samantha’s mom, Michelle Hudson (Texas)

November 27 - Dear Nicholas Sparks (Guest Blogger Kristen Stiner)

Dear Mr. Sparks,

I was told at 19 weeks, something was wrong on the ultrasound, therefore, I was sent to an off base hospital for a level 2 ultrasound where it was diagnosed as a CDH. Devastation set in......we were advised to terminate...... unwilling to do that, I decided to carry her to full term and take the chance.....I had heard of the in utero surgery, but the doctors would not tell me where to go or how to get it done, I should have looked more into it....I went into natural labor just a little over 38 weeks, it was a short labor.....I was prepped for a C-Sec. just in case she went into any distress, she did not, but she did turn breech, so C-Sec. was only option.....she took one breath with a cry than they had to ventilator her....for 17 days, she was up and down, then when she was doing her best they decided to repair the hernia....she sailed right thru it. They tried to get her off the vent once she failed. She extubated herself once, she failed, then at about 3 months old she again sailed right thru an extubation...... she remained on oxygen. Soon she needed another procedure, we were transported to Children's Hosp...where she entered a Cath lab to close her PDA valve in her heart..they were trying to reduce her pulmonary hypertension......she sailed again right thru it, she did great, the procedure was a success. At that point we returned to University Hosp, where they watched her progress. Finally the end was coming in sight. At 4 months we got the best news ever, she was able to come home soon. That was Sept. 29th, she came home Oct 8,1999......her first doctor visit was that following Tuesday, she was doing great, got her 4 month shots and was doing fine.......the morning of Oct 16, 1999, she woke up fussy as usual at about 3 a.m. My mother was here for a visit, so she took her first shift......I got up with her at 6 am to relieve my Mom, my husband gave her her meds and we took her to the living room, she was still fussy, so we changed her nose cannula, and I just held her.......she started calming down so I laid her down on the couch in front of me she looked up took her last breath than passed.....we tried CPR, the ambulance came and rushed her to the hospital....a hour later she was pronounced gone....... we are still trying to recover, my son who is 4 still is very confused and doing what he can to make mommy feel better.....she is buried in Colorado where we are from, and has a great view of the Rockies, she is at peace and that is the most important thing.......She is missed yet we will see her again soon. That is her story.


Written by Kaylyn's mom, Kristen Stiner (Nebraska)

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 25 - Dear Nicholas Sparks (Guest Blogger Melanee Spencer)

Dear Mr. Sparks,

Makenzee was my sixth pregnancy. She was due March 21, 1998. The pregnancy went along fine with no major problems. Just the usual morning sickness and uncomforts of being pregnant. That is probably why nobody realized she was so sick. Tell after she was borne. When March 21st came and went the DR's nor I was to concerned something different I was actually over due instead of early. I went in twice a week for water checks and fetal stress tests. Don't worry ever thing looks fine I remember being told. The day before I was scheduled to be induced my water broke. That was 4pm April 1st at 11:05pm Makenzee was borne. I never heard her cry, and then I knew something was wrong. I kept asking what was wrong with the baby? The Dr. and Don (my husband) telling me everything would be fine. After a few minutes one or two Dr. Pruss told me to ring the call light, by then I already knew there was a problem. I kept looking over to the little bed they had on the other side of the room, but I couldn't see anything just a lot of Dr.'s and Nurses working on her. More kept coming into the room. After a round five or ten minutes (which seemed like forever) one of the Dr.'s (I never got his name) had her in his arms wrap in a white blanket, Said they would bring her back or take me to her as soon as she was stable. I'll always remember how purple she was. By 11:30 p.m. a Dr. came back in the room and told us that we had a sick little girl. She has C.D.H and needed to be life flighted to either Madigon or Children's hospital of Seattle. Then a nurse came in to let us know she would be flown to children's. Makenzee would require E.C.MO. They would be waiting for her. Don got directions to Children's and left to be there so she wouldn't be alone. The Dr. explained the best he could what C.D.H was and that they weren't sure if she even had a left lung or if her heart was working right since they found a murmur. He gave her a 10% chance of survival if they could stabilize her enough to be flown to Seattle (which is a five-minute flight). I signed all the consents and then was taken to see her that was an hour after she was delivered. At around 3:00am she was finally ready to be flown to Seattle after they finished placing chest tubes to relieve pressure in the chest so she could fly. From her records I later learned she had coded in the helicopter on the way to Children's. By 5:00am a precious little girl was on E.C.M.O. Shortly after that Don called to let me know what was going on. At that time I asked him to ask if he could find someone to bless her. Which he did? At 9:00am I released from the hospital so I could go to Seattle to be with her. She spent the next week critical, vent dependent, but fairly stable. On the 13th of April they tried the first ECMO trial off after the first 15 minutes her SATs and blood gases were so poor the stopped the trial off. On the 14th they tried other trial off this time she made it the hour, but her co2 was too high. This also was the case for the 15th. ON the 17th Makenzee was placed on the oscillator to she that would help her lungs better the vent. The first couple of days nothing changed. We were no closer to coming off ECMO or surgery. April 21st trial off ECMO again not good, The DR's informed us they did all they could except the surgery to repair her diaphragm. So at that time surgery was scheduled for that afternoon. Makenzee was in surgery for three hours. We were told the surgery went well. We also found out at that time that her stomach, intestines, liver and spleen was all in the chest (on the leftside). And that the front off her diaphragm on the left side never formed they had to build her one with marlex and gortex. The next few days were rest from the surgery days. On the 26th Makenzee was taken off of ECMO it was decided it was not doing her any good. It was a rough night her condition was getting worse. She stabled out in the morning so we went home to get clean clothes and check on the other children. The Dr. called to let us know that her SATs and gases were dropping and he didn't think she would make it much longer. We got there and the Dr. said you won't believe this but her SATs and gases are okay. We waited with her and later that evening the numbers slowly started to fall. We was informed they was grasping at straws now. And gave her a steroid and Diphyridamole and but back on the ventilator. I mention the Dipyridamole because at the time Makenzee was only the second baby given this drug for pulmonary hypertension in Seattle and their pharmacy could find no other data on this drug with babies. This seemed to work her SATs were good, blood gases were the best they had ever been. And for the first time the ventilator was being reduced (pressure/rate). This continued for the next three days. Then her SATs would drop they would do some adjusting, she would be okay. They placed her back on the oscillator. We did this for a couple of days. On the morning of the 4th I was meet at the wash area by one of the DR's He told me it was not good, he just talked to my husband. Always a bad sign when the Dr. calls your house. When Don called back I told him he better come to the hospital. I asked the Dr. the chances for Makenzee's survival he answered poor, she would not have a child hood, she would be oxygen dependent the rest of her life and probably on a ventilator, possibly deaf and blind from all the measures being taken to save her life. But he wanted to give her twelve hours. In that twelve hours I had seen my baby have mini codes every three to four hours. At 12:00am as they asked us to leave the room, my heart knew it was time to put her in Gods hands. When we came back in the room after about 15 minutes I told them that was enough they could care for under the care plan but no more special measures I couldn't do this to her anymore. Don asked me at that time could I let her go, the answer was and is no, but I love her enough that I will. They asked us to leave so the could put her back on the ventilator. We went up to the chapel and prayed. After thirty-four days I finally got to hold our little girl, Don and me Took turns. At 10:00am we were told that her kidneys were failing and they could put her on dialysis. We declined. At 12:30pm Makenzee died in our arms.


Written by Makenzee's mom, Melanee Spencer (Hawaii)

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 23 - Dear Nicholas Sparks (Guest Blogger Stephanie Spencer)

Dear Mr. Sparks,

My name is Stephanie Spencer, and my son died July 30, 1999.He had a bilateral diaphragmatic hernia. We had no idea anything was wrong, my whole pregnancy everything went just fine. We didn't know anything was wrong with Aaron until the doc cut the cord and he couldn't breath on his own. The doc's tried everything they could to get him to breathe, they started bringing in machines to x-ray his lungs and they wouldn't tell me anything. After a while they moved him to another room and a doc came in and told my husband and me that they were moving him to another hospital with a NICU unit. They moved our son and about an hour later a doc from the other hospital called and told us my son had no chance of living with the condition he was in. They told us he had no lung tissue at all that his bowels had moved into his chest and taken up all the room therefore preventing his lungs from growing. It was the worst day of my life and I am dealing with it one day at a time. I know my son is in a better place where he isn't suffering, and that is what helps me to go on every day. In loving memory of my son, Aaron Spencer.


Written by Aaron's mom, Stephanie Spencer (Georgia)

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 21 - Dear Nicholas Sparks (Guest Blogger Alex Bundy)

Dear Mr. Sparks,

I found out I was pregnant towards the end of 2007 shortly after finishing school. The beginning of my pregnancy seemed normal, like any other normal pregnancy would. When I was 20 weeks along I had my first ultrasound, where we were so anxious to find out the sex. Instead we found out that our baby had something wrong. I was referred to high risk specialist in Virginia and continued my care there for the remainder of the pregnancy. They informed me that our baby had CDH. We had no idea what that was and spent the next several months researching and learning everything we could about it. There was, of course, no way of knowing what was going to happen. I had many ultrasounds and stress tests done, nothing seemed to worsen, but nothing was getting better either. I was told I would have to give birth at another hospital in case we needed the ECMO machine. While her father and I were at home putting her crib together in anticipation to bring our sweet girl home, we got the call that the doctors wanted us to travel to Duke to be induced there. I was only 37 weeks, but they did not want to risk me going into labor on my own and not being able to get her the help she might need on time. We got to the hospital on May 14th 2008 around 6pm where they started the induction. I stayed in labor for an entire day before I was dilated enough to start pushing. I was wheeled into the OR to deliver, and after only 30 minutes of pushing this beautiful 5 lb 15 oz little girl was born. She was immediately taken to another room, and we later found out she had to be placed on the ECMO machine, or she would not have made it through the night. She fought for two weeks and did very well until she was able to be weaned off. For the following two weeks she remained on a jet ventilator where she continued to fight. On June 13th, after a month of holding our breaths, we realized that Riley would never be strong enough to endure the surgery that she needed. She was removed from all machines where she peacefully slipped away in her mothers arms around 1:00 AM on June 14th 2008.

-Alex Bundy, Rileys mom. North Carolina

November 20 - Dear Nicholas Sparks (Guest Blogger Theresa Hohman)

Dear Mr. Sparks,

My due date with our second child, Tierney, was January 24, 1992. My pregnancy was very normal in all respects and I had the usual ultrasound at 20 weeks with no abnormalities shown. January 24 came and went with no sign of Tierney coming into the world yet! At 41 weeks I had another ultrasound and a stress test that indicated no problems. On February 3 I went into labor and after a fairly short labor Tierney was born. Tierney, at 6 lbs. 12 ounces, was smaller than we expected for an overdue baby but appeared perfectly normal and had very good Apgar scores. 

On the morning of February 4 I was getting ready to go home when our pediatrician came in to see me. He said that a nurse thought she heard Tierney’s heart on the right side rather than the left and therefore they had x-rays taken of her chest. He pulled the x-ray out and showed me that her heart was indeed on the right side of her chest and her intestines were where her heart should have been. I asked him what this meant and he said he had never seen this before but that a surgeon would be in to see me. I was devastated! 

The surgeon, Dr. Croitoro, came in and told me Tierney had a diaphragmatic hernia and needed an operation to repair it. I was more than upset and very confused but Dr. Croitoro assured me that Tierney was very lucky because her lungs were perfectly okay. He said the hernia may have been caused very late in my pregnancy and he even discussed viewing my ultrasound to see if it was apparent at such time (I don’t think he ever did this). 

Tierney’s operation to repair her diaphragmatic hernia was performed by Dr. Croitoro on February 5, 1992. The surgery went well and Tierney recuperated in the PICU. She looked so relaxed and I can remember her sucking her tongue in her sleep. Tierney needed very little medication and was sent home earlier than expected on February 9, 1992. 

The 1st 6 months of Tierney’s life were pretty uneventful. I breast fed her and she thrived very well. She did have a tendency to vomit on occasion but I thought it was from overindulging herself with milk. When Tierney was 6 months old she started to have bouts of severe vomiting and abdominal pain. After several visits to our pediatrician and finally a visit to the hospital for dehydration, we were told she had reflux and she was put on two different medications. We were relieved to hear a diagnosis and to have a solution to the problem. Our relief was gone shortly as she started vomiting again and her pain seemed to intensify. We spent many nights walking with Tierney as she only seemed comfortable when you held her upright and she did not like us to sit down. I even took her for late night drives in the car because my back would ache from carrying her. We had monthly visits with the Pediatric Gastroenterologist (PG) that diagnosed her with reflux and he assured us that Tierney would eventually grow out of having reflux. Many times I discussed her CDH with him but he said there was no correlation between her CDH and her current problems. Tierney’s weight gain was very slow and she became a very picky eater. We would go for a week or two with no problems when suddenly she would vomit for a few days in a row and would be extremely uncomfortable. On Tierney’s “bad days” she would sometimes hold a cookie (that she would normally love to eat) in her hand for hours on end! She knew she would like to eat it but she couldn’t because she felt so lousy! 

We continued to see our PG and Tierney had X-rays, ultrasounds. Upper GI’s, Lower GI’s etc. but nothing was ever seen to be abnormal. Tierney was put on IV liquids a few times for dehydration and was even hospitalized for a few days right after her 2nd birthday but the diagnosis was the same – REFLUX. 

In September of 1994 Tierney experienced a severe bout of vomiting and pain. She couldn’t even brush her teeth without vomiting. Her pain seemed to come and go and was so severe she would tighten up her legs and be straight as a board and then when she had a little relief her eyes would roll back. Perry and I decided we needed to get her to the hospital. Tierney was admitted but they had to rule out appendicitis and other things so they couldn’t give her pain medication. She was in such pain and no one seemed to know what to do so we finally called Dr. Croitoro’s office and they sent Dr. Donald Nuss to see her. He reviewed a recent upper GI and determined that she may have blockage caused by adhesions and she needed immediate surgery. 

Dr. Nuss operated on Tierney the very same night he examined her. After the operation Dr. Nuss told us Tierney was a very sick little girl and that her threshold for pain must be extremely high because she had a volvulus. Apparently her intestines never adhered to the stomach wall after her CDH repair and they were twisting and turning until they finally tied into a complete knot that could not untwist. Dr. Nuss told us that Tierney would have died if he did not perform the operation. Tierney was closely monitored in the PICU and after 24 hours Dr. Nuss operated again to perform a resection on her intestines. Tierney spent a few days in the PICU with a tube through her nose to drain the “gunk” in her stomach and was later moved to a regular room. After 2 weeks Tierney was well enough to go home. 

Tierney sometimes complains of stomach pain but for the most part she is a happy, healthy, well-adjusted child. We had one bad scare a few months after her surgery with severe abdominal pain but we found she had eaten a large amount of peanuts and she suffered blockage from the peanuts that she could not digest properly. We don’t allow her to eat peanuts but other than that she eats a normal diet. Tierney is now eight and is in second grade. She is on a swim team, participates in Brownies, Soccer and Basketball. In addition to Tierney’s older sister, she has two younger sisters and one younger brother. After reading several other stories we realize we are very lucky but we hope the potential for intestinal problems is not overlooked by doctors of CDH survivors in the future. We know Tierney could have been spared a lot of pain if a connection could have been recognized earlier in her life.


Written by Tierney's mom, Theresa Hohman (Virginia)

November 19 - Dear Nicholas Sparks (Guest Blogger Phyllis Smith)

Dear Mr. Sparks,

This is the story of our angel in heaven. Cherylynn Reneé Smith was born on September 5, 2001. My pregnancy was normal. Nothing unusual occurred. At least, that is what we thought anyway. All my tests were normal. Her ultrasounds showed only a healthy baby.

I was telling everyone at work that I'd have her on Labor Day. I only missed it by two days. I went to my doctor appointment like normal the day before she was born. My doctor said I was dilated to 3 and it was time for me to quit work. I called my boss and told him it was time for me to start my maternity leave.

I awoke the next morning as usual. I took our son, Michael, to daycare so they could take him to school. Michael was in kindergarten. When I got back home I made breakfast for myself. When I finished eating I got up to clear my dishes and that is when my water broke. At first I didn't think anything about it. With Michael, I felt a pop before there came a gush. There was no pop this time. So, I thought I just needed to go to the bathroom. I got cleaned up, and it happened 3 or 4 more times. I was running out of clean shorts by then. I called my mother-in-law to tell her my water broke. She left work to take me to the hospital. When I got there I had to check in and all the other things to go along with a delivery. I was pretty happy. I was finally going to get this over with. I was about to die from the heat.

I got settled in my room. Several friends came and went to check on me. I was on the phone constantly calling everyone. One of the nurses commented that she couldn't believe how calm I was - especially since I went from a 3 in dilation to a 7 in no time.

One of the people I called was my mom. She lives in Georgia. I had moved out to Arkansas in 1984 to attend Harding University. I met my husband the last year I was in college. I decided to stay when I graduated. I called my mom to let her know that her grandchild was on the way. Cherylynn made the 24th grandchild for her. I am the youngest of seven. She has gotten a lot of grandkids from us. That doesn't include step-grandkids, either. She has somewhere between 5 and 10 great-grandchildren.

The time came to get down to the nitty-gritty and have this baby. It didn't take long for me to have her. It was a shorter time than with Michael. Michael's delivery was hindered by the fact that his cord was wrapped tightly around his neck. Thankfully we have a very skilled doctor. If not for him, Michael might have either suffered severe brain damage, or worse. He very well could have died during childbirth.

Anyway, the time soon came for me to push. I think there might have been a total of 4 or 5 pushes and she was born. She was the most beautiful baby girl you had ever seen. She had a full head of black hair just like her daddy. Well, actually, she had more hair...on top, anyway. She looked just like him. She was all pink, and just beautiful. Michael was blue as a smurf when he was born.

She didn't cry when she was born. You could tell she was having some kind of problem. When the nurse couldn't get her to cry, my doctor left what he was doing to me and went to help her. They tried everything. They gave her shots of medicine. They gave her an external heart massage. They thumped her feet. But in spite of all that, all she could muster was pitiful little mews. I will never forget her sounds. I will never forget the struggle she had to try to breathe. You could tell something bad was wrong with her. When it was obvious that something bad was wrong my doctor told the nurse to take her to the nursery and to get her pediatrician over there right then.

The next 39 minutes were a slow motion blur. The nurses were running in and out of my room getting info from the fetal heart monitor. They were shoving papers in my face to sign. I'd try to get them to tell me how she was and the best I could ever get was that she was pinking up. Or that her doctor was working on her. My doctor said he'd find out what was going on as soon as he finished with me.

I will NEVER forget when he came back into my room after going to the nursery to find out what was going on. He told us that she wasn't going to make it. He told us that she had a diaphragmatic hernia. He said that from the chest x-rays her doctor had taken, it looked like her diaphragm had never formed. That was when the world came crashing down on me. If not for my son, I wouldn't have made it to the next day. All I wanted to do was curl up and die. I fought off strong urges to do just that for a while after she died. It was very hard. But, I couldn't do something like that to my precious son. He will never know just how much his mommy needed him then and still needs him now. Luckily, Ashley has provided help since she was born. I long to be with Cherylynn but I couldn't leave my precious children I have here on earth with me.

I think I may have hurt for Michael more than for myself. I didn't know what we were going to do. I knew it would break his heart. We thought at the beginning we were going to have another boy. So, we told Michael he was getting a baby brother. He was on cloud nine. When I had my second ultrasound we found out it was a girl. When I told Michael he was getting a sister instead, he cried and cried. It broke his little heart. But in no time he warmed up to the fact she was a she and not a he. He was soon so happy. He couldn't wait until she was born. Then, for this to happen was just not right for him.

His Aunt brought him to the hospital to see her. He didn't know she had died. Neither of them knew until they got there. One of the nurses asked if she could take him to see her. I let her take him to see her. I wanted him to be able to see her and tell her goodbye. I hurt for him so much. A five year old shouldn't have to go through something like that.

The next day when my doctor came to check on me I asked him if I had to stay until the next day. I wanted to get as far away from there as I could. He was reluctant to, but he went ahead and discharged me. We only live about four or five blocks from the hospital. He knew that if I had any problems we could be there in less than a minute. He also knew that I desperately needed to leave for my sanity. So, against normal protocol he discharged me only 15 or so hours after giving birth.

One of the worst parts of it all was having to leave the hospital without her. All I had was a box of items the Auxiliary put together for us. That is something they do in situations like that. It was just so wrong. I went in to have a baby and I left with nothing but a box. The nurses took a lot of pictures for us. They took pictures of her by herself, with her daddy, with her brother, with me, and with my mother-in-law. The hospital has a deal set up with a baby store in town to have the baby's footprint put on a plate which the parents can decorate, and they then put it in an oven to "cure" it. Of all the things I thought about during this time I asked if they still did the porcelain booty like the one I got for Michael. That is when they told me they were doing these plates. Well, I still wanted mine. I called the business and spoke to the owner. I told her what had happened and I asked her if she would be willing to go to the funeral home and get her footprint for me. She very graciously agreed. That was one of the most endearing acts anyone has ever done for me or my family. Just thinking about that is about to make me cry. I don't know the lady but that act has insured that I will always hold her in high regard. When I felt up to it I went to the store and decorated it. I bet I spent 5 hours working on that plate. I couldn't find an angel to put on it so she had her best friend who is pretty artistic draw one for me. That was another lovely act. That plate is one of the things I cherish most associated with Cherylynn. It has her precious footprint on it. I have it on Ashley's dresser. When Ashley was born I made one for her also.

We had Cherylynn's funeral on September 8. I can't deal with viewings so we combined the viewing with the service. A dear friend's husband did the service. Through the years they have done a lot for us. She performed our premarital counseling. He officiated at our wedding. In fact, our wedding was held in their lovely home. They have done a lot for us in the 20 years of our friendship.

My husband was scheduled for a vasectomy the following week after Cherylynn was born. My doctor told us to hold off on it until we had time to think about it. I was so hurt I told him we were not going to hold off. I was not going to get pregnant again and go through that horrific pain again. He told us to just think about it and if we decided to we could cancel it. He told us if we needed until the day of the appointment that was fine. I ended up calling and canceling the day before. He had originally been scheduled for one 2 weeks before she was born. I don't remember now why we cancelled it. I am just thankful that I changed my mind.

We were planning on waiting about four or five months to give me time to heal both physically and emotionally. Well, six weeks after Cherylynn was born I was pregnant. At six weeks and three days I miscarried. It was just too soon after her for my body to carry the baby. Six weeks after that I was pregnant again. That was the most stressful nine months of my life. I was so scared. My doctor sent me for a Level 2 ultrasound at UAMS in Little Rock to make sure Ashley didn't have a diaphragmatic hernia also. Much to our relief, she was perfect. They offered to do an amnio to check for Downs due to my age. We turned it down. We didn't care if she was born with Downs. We could handle that. Downs children can lead a fairly normal life. All we were concerned with was having a healthy baby that lived so we could take that baby home to love instead of a box.

Michael didn't care what this baby was. All he wanted this time was a baby to bring home also. He told me one night before Ashley was born that if this baby died she would go to Heaven to be with his sister, and if she lived we would bring her home. He said he didn't want her to die. That just broke my heart. He missed his little sister. He still does.

I guess we may never know why Cherylynn had to die. I believe in God, and I know that all things work for the good through Him. But I have a hard time seeing anything good with her dying. I do know that if she would have lived we would not have Ashley. I would not trade anything in the world for my baby girl I have with me right now. And on the other hand, I would give my right arm to have Cherylynn back. Not a day goes by that I don’t think about my precious angel. My heart will ache for her for the rest of my days. But, I know that she is in Heaven with God. I know that Jesus is watching over her. I know she is in the best place in the world. But knowing that will never close the gaping hole in my heart, nor soothe my aching arms that long so much to hold her. One day I will hold her in my arms and be able to love her forever and ever.

I know deep in my heart that God will never put more on us than we can bear. I just wish He wouldn't have so much "faith" in me. That is something I hope I never, ever have to go through again. It is just not right for a parent to outlive their child.

I still have pain when I think of her. I will until the day I die. I have gotten better. I have learned to laugh again, and live again. I have to for my son and my other daughter. They are the very life in me. But for the rest of my days my heart will ache for my precious Cherylynn. May she rest peacefully in the arms of her Savior, Jesus Christ. Mommy loves you with all her heart, soul and mind. One day I will join her and hold her for all eternity.

In loving memory of Cherylynn Renee' Smith, born September 5, 2001. Died September 5, 2001 after only 39 minutes of life. "Though your life was so brief, your memory will live on forever and ever. Baby girl, Mommy, Daddy, big brother Michael and little sister Ashley miss you so much. Our lives will never be complete until the day we can be with you in Heaven." "Our love for you will burn for all eternity." Mommy loves you and misses you so much. No words can adequately explain the love and emptiness in my heart. I love you forever and ever.

Michael is in 5th grade now. He still misses his sister and still has a hard time with the concept of death. Ashley will be 4 soon. Even though she was born 14 months after her big sister died she knows Cherylynn's picture and will tell you that is her sister in the picture.

Written by Cherylynn’s mom, Phyllis Smith (Arkansas)

November 18 - Dear Nicholas Sparks (Guest Blogger Lisa Hoewing)

Dear Mr. Sparks,

We were diagnosed with CDH at 18 weeks through a routine ultrasound. I was not having any problems; we just wanted to know the sex of the baby.

After diagnosis, we saw a specialist every 4 weeks to check on the progress of his hole. It appeared that our son had a left-sided hernia with stomach and a loop of bowel in his chest cavity. Both lungs could be seen, however the size of the left lung was unclear. We live in Central Illinois, and our hospitals were unable to handle the CDH repair. My husband and I researched hospitals with successful CDH repairs. We chose Children's Hospital after meeting with the surgeons and touring their NICU. We felt very comfortable with the quality of their facility. They also had the ECMO machine, which we had been told that our son might need.

On February 2, 2002, I gave birth to Aaron Jacob Hoewing, weighing 8 lbs 12 ounces and 22 inches long at 6:37 PM. The delivery was a 39-week induction, and I delivered Aaron vaginally with help from the vacuum suction. I had a pretty normal pregnancy until the last 3 weeks in which I had excessive amounts of fluid, which is sometimes common with CDH babies because they are unable to take in as much amniotic fluid. He was delivered at Barnes Jewish Hospital in St. Louis, MO across the catwalk from Children's Hospital. When Aaron was born we heard a faint cry that sounded like a little lamb. My husband and I were excited because we had been told previously that he would not make a sound. He looked so beautiful and healthy on the outside that it was hard to believe that there was anything wrong with him. He was immediately intubated and placed on medicine that kept him paralyzed. His Apgar scores were 2 and 7. His initial heart rate was 46. CPR was begun, and he was then stabilized. We were told that we could gently touch him but not to stroke him. We held his hand and took quick pictures before he had to be whisked away. I told my husband and family to go with him while I waited for my epidural to wear off. The NICU doctor called me immediately after Aaron was admitted to tell me that he was stable and that they would watch him carefully through the night and would meet me in the morning.

I finally got to see my son the next morning. He was still on a regular vent but at very high settings. I was not allowed to hold him. Later that day Aaron was switched to a high frequency vent called an oscillator. The next day Aaron was put on Nitric Oxide, which he remained on through his surgery.

The surgeons came by to check on Aaron every hour. I did not know how sick our son was; we thought this was normal procedure. The surgeons postponed Aaron's repair until they felt that he was stable enough to handle the surgery. The repair was done when he was 5 days old in the NICU because they were unsure whether Aaron would handle being moved to the OR. The entire NICU had to be shut down for our son's surgery. We felt terrible because that meant that other parents could not see their children during this time. We found out later that surgery had never been done in the NICU before Aaron.

The surgery was a success. Aaron had enough muscle in his diaphragm that he did not need a gortex patch. His stomach, spleen, and loop of intestine had been put back where they belonged. The surgeons informed us that the surgery was just a small part of the entire CDH recovery. Aaron was not out of the woods yet.

On Feb. 19th, Aaron was placed back on a regular vent. WE FINALLY GOT TO HOLD OUR SON!! They took off the paralyzing medicine. We were beginning to see movement for the first time. Each activity was a big deal to us. The first time his foot moved, eyes opened, wiggled his fingers-- it was good medicine for both our son and for us. Aaron began recovering very quickly. His settings were lowered each day. On March 6, 2002, Aaron was extubated!

He was put on C-Pap for two days and then finally to nasal plugs at 30% oxygen. His medicine was switched from IV to oral medicine. We were able to try feeding him from a bottle on March 14, 2002. He seemed to have an oral aversion. The nurses explained that this was normal for babies who had been as sick as our son was. They have never had anything good put in their mouths before so naturally they hate anything put in it.

We worked on feeding issues for the next couple weeks while Aaron continued to get stronger each day. He was weaned from all medicines and taken off oxygen on March 28, 2002. We were able to take Aaron home on April 10, 2002 without ANYTHING!! He is presently on no medication or oxygen. To look at our son you would never know that there was ever a problem. He weighs 12 lbs 5 ounces and is 23 inches long. He is a happy baby, always alert and smiling. Everyone comments on how alert he is. We have Occupational and Physical Therapy that come to our house one time a week to work on range of motion activity. Since Aaron was paralyzed for so long, some of his muscles became stiff.

We know that Aaron's success is from the many prayers that were prayed on his behalf. We had several churches praying for our son ever since we were diagnosed. We believe that God has a special plan for our son. We are excited that we will get the chance to witness our precious cherub grow and become the man that God intended him to be.

Sincerely,
Aaron's mom, Lisa Hoewing (Illinois) 

November 17 - Dear Nicholas Sparks (Guest Blogger Brenda Slavin)

I was told by a doctor I was probably infertile. Bob and I decided that we would adopt in the fall of 1993. We were just newleyweds when I found out I was pregnant. Both of our families were as excited as we were. On my sixteenth week of pregnancy I went for my first ultrasound. At first I couldn't stop smiling. Then as time dragged on I noticed the technician was staying on one particular spot for a long time. I began to feel panic. They informed me by baby had an enlarged kidney. Later that day I went to my OB appointment in a total state of shock. The resident covering for my doctor informed me I should probably have an abortion. She felt this was a life-threatening situation for the baby. I bluntly informed her I would not have an abortion and I was going to give this baby every chance I could. No matter what birth defects or disabilities this child has I would have this baby. (Later I found out the kidney problem was not life-threatening). I received my medical care at Bethesda Naval Hospital in Maryland because my husband was in the military. They are a research hospital so I became the highlight in the Prenatal Assessment Center for my weekly sonograms. I requested an amniocentesis. The chromosomes came back normal and showed we were having a little girl. Around my thirty-second week an ultrasound came back normal and showed "a mass" in her chest cavity. I was informed I would have to switch hospitals. I had to go to Walter Reed Army Medical Center in Washington, D.C. because Bethesda did not have a pediatric surgical team. (My husband was in California for a week for the military when they told me this news.) I read as much as I could on diaphragmatic hernias. The more I read, the more scared I got. In my thirty-forth week I went into pre-term labor due to excessive amniotic fluid. They were able to stop labor. On November 6, 1993 (thirty-eight weeks) I delivered Amanda after seventeen very physically and emotionally tiring hours. I remember as I was pushing her out thinking I really don't want her to be born yet. She was safer inside me. I was afraid of what was going to happen when her life was in the hands of someone else. I think right after birth I passed out. I woke up at 3 am to my pastor calling my name. All I could think was Amanda is dead. They assured me she was on the ventilator doing well. They told me she had a cleft palate, diaphragmatic hernia, hydronethrosis, and clubbed fingers with hypoplastic nails. On the second day of life they fixed the hole in her diaphragm. Her spleen and intestines were placed back into her abdomen. She did very well. She was completely off the ventilator within one week and acting like a normal newborn. Then they noticed she wasn't stooling properly. She had a biopsy of her intestines to prove she did have Hirschsprungs Disease. At one month of age she had surgery done to perform a colostomy. After the surgery she developed candida sepsis. We were certain we were going to lose her. She was on full life support for two weeks. At two months of age they noticed she had gastroesophageal reflux. They performed another surgery to fix the reflux and gave her a G-tube for feedings. (She could not suck well with the cleft palate) Finally January 18, 1994, we brought her home. In March I asked Amanda's nurse if she had stooled that day. She lied to me and said yes. Her stomach was distended. We went through the trash and only two diapers were found and neither with stool. We took her to the hospital. They tried several enemas. Finally the next day one of the enemas worked. She began spiking fevers. They thought she had osteomyelitis (which later was unfounded). She was in the pediatric ward on antibiotics for a month. I kept telling them the problem was her colostomy. Later in April at home Amanda went into septic shock. She had stooled earlier during the day but stopped in the evening. This time we ended up in the PICU on the respirator for a collapsed airway for five weeks. (Her fever shot up to 104.8 and trying to breath heavy she collapsed her airway) The doctors checked her intestines again and found her surgery wasn't performed properly. She was sent home on oxygen. She was weaned within two weeks. I had to give her an enema after each feeding everday. (Five times per day) In the end of June she began refluxing again. She vomited everything she ate. The surgeons refused to do anything for her until the end of August. It was frustrating calling them every day listening to them denying her medical care. In September she had surgery to fix her vomiting, fix her colostomy, and put tubes in her ears. She was admitted a few times in September and October for infections of her surgical wound. On Friday, October 28 Amanda developed a cold. That day I had taken her to a civilian hospital to start treatment. (I felt the military hospital did more harm than good). On Saturday they took an x-ray of her lungs and ruled out pneumonia. They put her on antibiotics and said they thought it was a virus and they would keep and eye on it. On Monday (Halloween) we bought her into the doctor at 9:00 pm. We got home around 11:30 pm and I put her to bed as usual. On Tuesday, November 1 (All Saints Day) I got up at 6:50 am and instead of going to the kitchen to get a cup of coffee, I felt drawn to her room. When i went to pick her up I noticed her legs and arms were ice cold. In the light I noticed she was bluish gray but conscious. She was breathing very shallow. I ran to turn her oxygen up. When I came back Bob was performing CPR. I took over CPR while he called 911. Amanda took her last breath in our living room while her eyes were locked on us. As difficult as it was, we were glad Amanda died at home. No tubes, no hospital, no doctors. She deserved to die in peace after all she had gone through. We found out from her autopsy she died of pneumonia. The x-ray done at the hospital did show pneumona. Here pediatrician overlooked it. The last few years have been the most difficult and most precious years of our lives. We're currently in therapy to deal with anger we have against the doctors and the military. (We're angry with the military because Amanda was a Gulf War Baby). Amanda will always be a part of our family. She taught everyone around her that Jesus is a big part of all of our lives and miracles do come true.

Sincerely,
Amanda's mom, Brenda Slavin (Marylan)

November 16 - Dear Nicholas Sparks (Guest Blogger Rebecca Yerly & Jon Hockenyos)

Dear Mr. Sparks,

Our first child, Jack Hockenyos, was born on October 10, 2000 at St. David's Hospital in Austin, Texas. Even though I was an older mom (age 36), I had an ideal pregnancy - no morning sickness, etc. I even had an amniocentesis with a high-level ultrasound, and nothing was detected. I went into labor 13 days after Jack's due date, and labor progressed smoothly and uneventfully. When Jack was born, it was obvious to the attending doctors that something was wrong - his belly was concave instead of rounded on the left side because the organs had migrated through the hole in the diaphragm into his chest.

He was rushed to the NICU amid the sounds of the siren they ring when calling the emergency team. My husband and I had no idea what was going on. Our OB went to investigate, and came back with the news. We of course had no idea what this birth defect was. The pediatric surgeon came in a short time later and explained to us that until they went in surgically and took a look, there was no way to accurately predict how well Jack would do. Overall, the odds are about 50/50, but Jack appeared to be a "better" case because he had some of his left lung present. He was put on a drug to paralyze him and not make his organs work.

On the 3rd day of his life, he had surgery to correct the defect. Waiting those 3 days were some of the hardest of our lives. While I just prayed and prayed that Jack would get better, my husband was more philosophical. Not a religious man, he went to the hospital chapel and prayed that God would do what he needed to do with Jack. He felt it wasn't his place to make a request, but simply asked that he be given the strength to deal with whatever came his way. It was during this time that my husband went online and found the CHERUBS website. He printed out material for me to read and related stories of children who had done well. This really gave us both comfort and hope.

I had never held Jack, and I'll never forget the female anesthesiologist who instructed the surgical team that I was to hold him for a minute before they wheeled him into surgery. I wasn't sure if I would see him alive again, and I savored the moment. We had a huge group of family and friends waiting at the hospital during the surgery, but Jon and I went to a room by ourselves and waited. It was surprisingly peaceful. The surgeon came in and said it had gone well - he did not need to use a patch, but rather was able to stitch the diaphragm together. I remember a weight being lifted from my body and I smiled for the first time since he was born.

Jack was in the NICU for a total of 5-1/2 weeks. At 3 weeks, he developed a bowel obstruction and had to have another surgery to repair it. At 4-1/2 weeks, he developed an inguinal hernia and had to have a 3rd surgery. When he finally came home, we were both thrilled and terrified. What if something happened again? Would we know when to take him to the hospital? Luckily, things went smoothly. Jack was able to eat from a bottle (no tube feeding) and began to take more and more donated breast milk in. (We were lucky to be able to utilize the Mother's Milk Bank in Austin since I was unable to produce enough milk.) We recorded every ounce of milk that went in, and every ounce of output, too! He grew and grew, and hit his first year milestones without a hitch.

Just after his first birthday, however, he began to spit up. It didn't seem dramatic at first, but increasingly looked abnormal. We took him in, and it was discovered that he had reherniated. Surgery this time was more traumatic for all of us. Jack was not just our newborn that we were getting to know, but our son whom we had lived with and loved for a year. We were so scared, but surgery went fine, and Jack came home after a week and a half.

Jack is now 6 years old. He did have another bowel obstruction at age 5, which had to be surgically repaired. We are hoping that this is it for his surgeries - knock wood! Jack is a sweet, loving and sensitive boy who is very curious. He has some developmental delays and receives speech, occupational, and vision therapy weekly. We are hoping with the early interventions that he will grow up to be a happy, independent adult who has no memory of his dramatic early years. We feel so blessed to have Jack and feel so lucky that he was one of the ones who made it. I just can't imagine our lives without that sweet, smiling face!

Sincerely,
Jack's parents, Rebecca Yerly & Jon Hockenyos (Texas)

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)