June 20 - Dear Nicholas Sparks (Guest Blogger Barbara Eisele)

Dear Mr. Sparks,

My name is Barbara Eisele, and I am the grandmother of my precious angel, Reese Gabrielle Eisele-Elizondo. I have been a member of the Cherubs organization since March of 2000, after Reese was born. I have waited to submit her picture and story; but I have read ALL of the cherubs stories to date, and I'm finally ready to share mine. Reese Gabrielle Eisele-Elizondo was born on March 8, 2000, on Ash Wednesday, at 6:45am, in San Antonio, Texas. I had been in the labor room with my daughter until it was time for Reese to make her arrival. I excitedly awaited just outside of the delivery room for my beautiful granddaughter to be gently placed in my arms; but I, like so many other stories which I have read here, never got that opportunity. I heard them calling 'code blue' on the intercom, and saw nurses, doctors, technicians, and everyone else, it seemed, in the world running into the delivery room. I .kept asking everyone what was happening, but no one seemed to hear. Suddenly, I saw a baby cart being whisked away to the nursery with 6 hospital staff surrounding it and running it down to the nursery. I began to run after the crowd, knowing that my grandchild was the baby in the cart and I kept asking everyone what was wrong. No one would hear me. I peered in through the blinds to try to see my precious baby, but every window I would go to, a nurse would run to close the blinds. My son-in-law came down to the nursery area, but neither he nor my daughter knew what was wrong.

Finally, the OB came into the hallway and tried to explain that they had discovered that Reese had CDH. We knew nothing about this, and the Dr. drew a little diagram to try to show us what had happened. He told us about ECMO - that 2 hospitals in SA had the machines. He told us that she had a 50/50 chance of survival, but that the specialists over at Wilford Hall Medical Hospital were very experienced. We agreed to have Reese transferred by ambulance to Wilford Hall; while my daughter would have to stay behind and my son-in-law and I would follow in the car. When we arrived at the neonatal area of the hospital, we found Reese up on a little pedestal with a team of Drs. and nurses working on her. After several hours of tests, X-rays, tubes, breathing apparatus, etc., the lead Dr. told us that Reese also had a heart defect which was called transpiration of the great vessels. They informed us that she would need to be transferred to a different hospital for heart surgery before they could put Reese on ECMO to be able to do the surgeries for the CDH. My precious angel never made it to Methodist Hospital. My son-in-law left to get my daughter so she could be with her baby. I stayed with Reese and tried to sponge bathe her as best as I could before her mother got her first real chance to be with her baby. I told them to keep Reese on oxygen.  I wanted her mother to get to hold her while she was still with us. The staff kept asking me if the parents were coming, but it took about 2 hrs. since the hospital was about 45 minutes away and my daughter had to be released. When they finally got to the hospital, the staff gave the family some time to be with Reese. We were able to hold her while she was still on oxygen; and then we let her fly to be with the other little angels in heaven. My daughter and husband stayed behind to bathe Reese, dress her up, take pictures, and hold her; while I rushed home to take down the crib, and throw all of the baby items into bags and closets to be out of view.

The death certificate lists the time of death as 3:45 PM, on March 8, 2000; although I never saw her move or open her eyes since my sprint down the hallway trying to catch up with the baby cart before they pushed her into the nursery. It's all still a 'fog' to me, as if it were a dream, as if it wasn't real; but I know that Reese is real! Many people would say that I don't really understand - I'm just a grandmother; but the hole in my heart aches and I know that I will never have another beautiful angel like Reese Gabrielle Eisele-Elizondo. She will always be my most special and precious grandchild.

Sincerely,
Reese's grandmother, Barbara Eisele (Texas)

June 19 - Dear Nicholas Sparks (Guest Blogger Shelly Evans)

Dear Mr. Sparks,

My husband, Shane, and I wanted our children to be 2 years apart. So, after the birth of our first son, Peyton, we waited one year and started trying to conceive. Much to our surprise, I was pregnant within 2 months. I had a very uneventful pregnancy and we assumed that we would have another beautiful, healthy child. We had an ultrasound and found out that we were having another boy. So, we started planning for Peyton's little brother's arrival. Then in my 31st week of pregnancy, I went into premature labor. I really wasn't too concerned. My doctor seemed more concerned than I was. The third day I was in the hospital, I was using the good old bed pan and I lost my mucus plug. It was then that I realized how serious this was. I didn't really feel like I was in labor. It's a wonder what drugs can do! However, I had dialated to 3 1/2 cm. I was in the hospital for a week and we finally got the contractions stopped. I was sent home on medication and bed rest. My step-mom came to help out with Peyton. Shane works out of state putting in natural gas pipelines. So, I was in desperate need of help. Things clicked along fine and we scheduled my baby shower for September 16, 1995. I went to see my Dr. on the 15th. He said that he thought I'd have to have my shower at the hospital. I said, "Yeah, right!" We took Peyton to McDonald's and when I went to the restroom, I started spotting. We went to tell my sister so that she could come stay the night with me "in case". We stayed up until 2am waiting. Nothing happened. I woke up at 5am to go to the restroom and my water broke. I immediately called Shane and we headed for the hospital. The pain was much worse than with Peyton. I literally thought I was going to die. I remember my nurse making a comment about how much the baby had hiccups when I was in labor. I asked her why unborn babies got hiccups. I had always thought that it was an air bubble in your diaphragm and they don't breathe air. She said that it's not necessarily air, it's just a disruption in your diaphragm. I told her that he had hiccups more than he didn't. He had them 11 times just while I was in labor! At 2:19pm, after much screaming, Shelton Earl Evans was born into this world, weighing 5 lbs. 12 oz. and 18 3/4 in. long. Needless to say, I didn't make my shower. I was in too much pain to notice that he wasn't crying. His nurse gave him a shot to "wake" him up. They thought he might be reacting to the Stadol I had during labor. It didn't work. After what seemed like hours, they began CPR on him. The nurses asked everyone to leave the room. After a few minutes of this, they wheeled him out of the room to the nursery. I really didn't know what was going on. Awhile later, my nurse came into the room crying. She told me that I had a very sick little boy. Then, my Dr. came in to explain to me that they had done a chest x-ray on Shelton and found that he had a condition called Congenital Diaphragmatic Hernia. This is a hole in the diaphragm. During pregnancy, vital organs and intestines slip up through the hole into the chest cavity and this prevents the baby's lungs from developing. He said that they needed to transfer him to Seton Hospital in Austin so that he could have surgery immediately. While he was explaining this, Shane arrived. I'll never forget the look on his face. He thought I had, had the baby but he didn't see him anywhere and I didn't look pregnant anymore. He looked around very confused. Then we explained to him the situation. They let us go in and see Shelton for a couple of minutes before they transferred him. (This was the only time I saw him with his eyes open and for the life of me, I can't remember it.) When we arrived at Seton, the surgeon came out to explain the surgery to us. They would make an incision and put everything back in it's place. They were hoping the hole would small enough to stitch closed, but if it wasn't they would have to use a synthetic patch to close it. He was in surgery for 5 hours. The surgery went well. His intestines and his liver were inside the chest cavity. Needless to say, they had to use a gortex patch to close the hole. When we went in to see him, I couldn't believe my eyes. He had tubes and needles covering every inch of his tiny body. I could only touch his head or his foot. Sometimes when I would go in to see him I would be rubbing his tiny feet and the alarms would start going off. They would tell me not to stimulate him too much. What a strange word for love. I wanted to rip all of those needles and tubes off of him, but instead I had to settle for rubbing his foot, and now I am told that this was too much. Shelton's stability rose and fell through the night. That was the longest night of my life! Shane told me that I needed to prepare myself in case he didn't survive. I told him to "stuff it", he was going to be just fine. Don't you love denial? Shane wouldn't go in to see him anymore. He was preparing himself for the worst. Shelton continued to deteriorate. His Dr. called the Santa Rosa Children's in San Antonio and consulted with the head neonatologist. They have a treatment there called ECMO. (Extra Corpeal Membrane Oxygenation) This machine would oxygenate his blood for him to take the strain off of his lungs and allow them to mature. In order to transfer him there, we had to make sure that he was strong enough to make the move. They performed an ECG and an EEG. His EEG came out fine. No brain damage. But, they thought they saw a problem on his ECG. They called in a specialist to confirm. The specialist arrived around 3am. We went in with Shelton while he performed a more advanced ECG. The Dr. showed no emotion through the procedure. When he was done, he explained to us that the right side of Shelton's heart looked fine. However, on the left side he detected a closure in his aorta. This is called Coarctation of the Aorta. While he was going through the medical jargon of this condition, I was staring at my beautiful son. We were in a different world. Just me and him, as it should be. I felt tears begin to stream down my face. Reality was setting in! How could this be? This was not real! This was a nightmare and any minute I would wake up. We returned to the waiting room while the two Dr.'s talked about our options. The neonatologist called Santa Rosa and explained the situation. The head Dr. there said that a baby born with CDH and any associated heart defect had a 100% mortality rate! I will never forget those words. He then told Shane and I our options. We could leave him on the ventilator and he might survive 3 days or we could take him off and let him go. I asked him, "either way, would we be delaying the inevitable?" He said, "yes!". So, we made the hardest decision of our lives. We chose to take him off of the vent. His Dr. asked us if we wanted to be there when he was removed. He said that if it were him, he came into this world with his parents and he would want to leave it with his parents. Shane said that he did not want to be there. I said that I wanted to. I could not pass up the first and last chance to hold my son. They brought in a rocking chair, with a pillow to sit on, in for me and they put up privacy screens up around us. My mom, my sister, my mother-in-law, my sister-in-law and me were there. I sat in the chair and they quickly unhooked him and placed him in my lap. He had been heavily sedated after surgery. There was no movement, no last breath. The nurse checked his vitals to determine a time of death and asked me if we wanted an autopsy done. She said that if we did that they would have to leave the tubes in. I don't know why that is, but I said, "no". I wanted all of the needles and tubes off of him right now. It was very silent and peaceful. I immediately brought him to my face. I wanted to take in every inch of him. I was transported to another place. A place where I had a beautiful, healthy son, a place where I took him home the next day and showed him his room, fed him, bathed him, loved him. A place where babies don't die! I unwrapped him from his blanket. I looked at every inch. I counted his fingers and toes. They were all there. They were all perfect. How could he look so perfect and have so much wrong on the inside? He was beautiful. His hair was brown like his Daddy's and it felt like silk. He had my nose which I got from my mom. He had my feet and toes. He looked like his Daddy when he was a baby. Everyone took turns holding him. I asked them to find Shane and send him in, but they couldn't. He was doing laps around the hospital. I did learn later that he stood at the NICU door and watched me holding him through the glass. After everyone was done I held him for a few more minutes. I stood up, and handed him to the nurse. She said that she'd clean him up for us. I turned and walked out without looking back. This haunts me to this day. I never turned to get one more look, see where she took him or kiss him one last time. I think I thought, in my mind, that if I turned around I would grab him and run and never look back. We left the hospital with an empty, hopelessness. It was as if he were still at the hospital and we just had to go pick him up later. We went straight to the funeral home to make the arrangements. I did OK until they brought in a casket to show us. I lost it! I will never forget the look on that man's face. He felt awful. He just turned around and took it right back out. There was no way that my baby was going in that box to be put into the ground. This was inconceivable. Shane was anxious to get home to Peyton. So, we went home and slept. That first night was terrible. I couldn't sleep. I would lay there staring at his cradle with all of his stuff in it, waiting for him. We had everything but the baby! I finally woke Shane up and told him to take it out of our room and put it in his room. The next day I went "shopping" for the perfect outfit and Shane went "shopping" for the perfect burial plot. I picked out the cutest outfit. It was blue and white and had 'Thank Heaven For Little Boys' on it. I got a preemie size so it would fit him. I was so used to buying for Peyton that I immediately picked up the bigger size. Then I realized that he didn't need growing room. The lady at the counter went on and on about how cute and small it was. I wonder what she would've said if she knew that it was to bury my baby in. My sister and I took the outfit to the funeral home. I wanted to see him, but he said that they weren't "done" with him yet. He said that I really needed to get a bonnet for him because he had a bad spot where they tried to put an IV in his head. I told him that we had all seen it and I didn't care. He looked perfect to me. We went back later to see him. Me and Shane went in first. Shane finally broke down. This was too much to bare. The next day we went to the funeral home before the funeral. They told me that it was time to go and I couldn't leave. I laid my head on Shelton's chest and cried out to God. I knew that this would be the last time I would see or touch him. I guess it's a good thing that they pulled me away because I would still be there today. The funeral and the days that followed were a complete blur. A week later I met my sister in town to have my niece's pictures taken and to take back some of the baby things that I hadn't opened. I went and looked at all of the baby stuff and when I went to the photo place there was a woman with a newborn baby. I just stood there staring at him. I wanted to take him and run. Just to hold and touch a baby seemed like Heaven. I realized that I was standing there crying and I hoped that woman had not seen me because she would've thought that I was crazy. Maybe I was. My sister was going to come to my house but she had a couple of stops to make first. I went straight to the cemetery. I guess she knew the shape I was in because she came there, too. When she got there I was laying on his grave bawling. I had my hands dug into the fresh dirt and ants were crawling all over me. As she sat there rubbing my back, I realized that this was too much to handle. I stopped crying, stood up and went back to my car. A few weeks later I got a job and kept myself busy. I did really good, too. I could talk about it with no problem. It happened to someone else- not me. I joined a support group at the Ronald McDonald House. All of these parents were so emotional and depressed. I started to feel guilty because I didn't feel like this. Did that mean that I didn't love Shelton as much as they loved their's? Two months later I found out that I was pregnant again. We had been trying. I said the day of Shelton's funeral that I wanted another one. Everyone told me, "you don't know what your doing! you need to wait." I told them that I wanted a baby when Shelton died and just because he died, that didn't mean I didn't still want one. I was so happy. I just knew it was going to be another boy. I had even contemplated naming him Shelton because I loved that name so much. We had our 1st ultrasound with a specialist and they told me that it was a girl. I started crying. I wanted a boy! Then it dawned on me what I was doing. I was unconsciously trying to replace him. I wanted to do it over and pretend that it never happened. After I told my boss that I was pregnant, she fired me. She didn't say that, that was the reason, but I know it was. I was the bookkeeper and she depended on me. I guess she thought that I couldn't do that being pregnant. Depression began to seep in. I didn't have anything to keep me busy anymore. I couldn't run anymore. I didn't want to get out of bed. I didn't eat. I didn't even want to take care of Peyton. He ate hot dogs or cheese, anything he could get himself. I slipped deeper and deeper each day. I wanted to die. I would pray to God everyday not to let me wake up. I didn't care about anything. I just wanted my son back. I would sit for hours holding his clothes, smelling them, trying to go back in time. Shane would come in and get mad because I didn't do anything around the house. He told me that he was going to admit me somewhere if I didn't snap out of it. I had a family to take care of. He didn't like to see me upset because that made him think about it and he didn't want to. He was still running. I finally hit bottom one day and called a therapist. I didn't know what else to do. I felt like I was going crazy. I couldn't control my emotions, I didn't care about anything and I cried continuously. After many weeks of therapy and the support of the Ronald McDonald House, I slowly came out of the depression and started to focus on my pregnancy. I was having problems. I had already started having contractions in my 5th month. I was, again, put on medication and semi-bed rest. July 31, 1996, 5 1/2 weeks early, Lacey Denise Evans was born weighing 5 lbs. 6 oz. She had some problems due to prematurity and she had to stay in the hospital a couple of weeks. We were so scared. The minute she was born, I said over and over, "please make her cry, please make her cry." I just knew that she was going to die. But, she did cry! She had to stay on a heart and breathing monitor for 6 months because she had apnea, but today she is a spoiled rotten, healthy 4 year old! It took me 3 1/2 years to go through the grieving stages and come to acceptance. It took Shane a little longer than that, but he has made it. It was alot of hard work and sometimes it seemed like I was going backwards. It was two steps forward, one step back! I still have bad days every now and then, but they are not as bad as they used to be. I thought that after so much time I would be OVER it by now. I now know that you NEVER get over it! You only learn how to live WITH it. You will never HEAL and it will never go away, you only learn to look at it from a different point of view. I am truly thankful for Shelton being born AND him dying. He taught me more in that short time than most people learn in their entire life. I wondered one day how someone knows if they have reached acceptance. I asked myself... if I could go back to that day and snap my fingers and Shelton would've lived, would I? The answer was "NO"! I later asked Shane the same question and he replied the same. I would still be taking life for granted, I would still be afraid of death, I would not know the true meaning of life and love and most importantly, I would not have the glorious, personal relationship with God that I have now. I wouldn't trade that for anything in the world! I no longer have the sense of loss. I know and feel that Shelton is with me everyday. He is not gone! He lives within ME! I had a video made of Shelton with the song 'The Dance' by Garth Brooks on it. 'I could've missed the pain but then I would've had to miss the dance'. And what a painfully beautiful dance it was!!!

June 18 - Dear Nicholas Sparks (Guest Blogger Lisa Thibeau)

Dear Nicholas Sparks,

I want to tell you a story of a young boy who is now 13. He’s a survivor, a blessing, and a cherished son. He is patient, kind and loving.

Adam was born on August 14, 2002. No one knew how special he was going to be, not just health wise but how special he is in our hearts. Adam is one of 2,500 kids born every year with Congenital Diaphragmatic Hernia (CDH). He was undiagnosed so his poor parents were clueless. He was born at the wrong place, in Hammond, La, and the closest we could get him to the care he needed was almost 80 miles away. Transport by ambulance was to slow and to dangerous. He had to be life-flighted to Oschner Hospital in New Orleans, La and the transport team was very nervous about it. You see they know that babies that are as critical as Adam was at that time do not tolerate changes in altitude very well. I will never forget seeing him the first time when they brought him to my room and told me the plan. They were going to place him in the helicopter and fly just over the trees, water, and buildings until they got to the hospital and land on the roof. Thank God for talented pilots and well trained transport teams, they arrived safely and brought him one floor down to the NICU unit.

The next day, they let him rest until so that he could gather his strength for the coming weeks of his battle for life. My husband and mother in law were already there and had been overnight. When I was released it was a mad dash to be near him. I couldn’t be there right away there were things to do. Adam was not my first child, my oldest was 4 and in the care of her aunt for what was to be overnight. Until I could go home with my supposed to be healthy son. We had to figure out long term care for my iguanas who needed daily feeding, and my mother was dealing with some very serious personal business that I was at that time clueless of (her youngest son had been arrested the same day under some very serious charges).

When we finally arrived at the hospital my mother put me in a wheel chair, by the end of the day I was glad for it. We arrived on the 11th floor to the NICU to see him and they allowed me a few minutes to just sit there before the nurses and doctor came to talk to us and tell us the plan. Now sir, remember we were expecting a healthy child, we were expecting to be released and go home with a new baby, we were expecting to put him in the cradle in our room, this was not the case. I was in shock; it took a week for me to start mentally processing everything that was happening. The first thing I am told is, “DON’T TOUCH HIM!! He’s too unstable.” So they arrive with paperwork and sign this, and we need you to sign that, and sign here, here and here. I know what I am signing is for his care but I don’t know specifically what it says (I read EVERYTHING on a normal basis but I can’t comprehend what they are putting in front of me, it might as well have been Old English, like what Beowulf is written in) I could have signed over custody of him and not known. Dr. Vincent Adolph is his surgeon and he is planning the repair tomorrow, if all goes well tonight. We spend a good part of the rest of the day discussing plans and trying to figure out what to do. I can’t drive back and forth, we live too far away, my transmission is going out, my husband is unemployed and I have been on leave since I fell on July 3rd at work. My mom decides that we are staying at the hotel that is part of the hospital tonight and we will look into the Ronald McDonald house for the next few days.

Day 3: Surgery, Every thing went as planned the night before, he is stable enough for surgery. We visit him early and the doctor comes and tells us his plan. He is not stable enough to move to the surgical unit (on the second floor) but we do this all the time. They close the NICU for all visitors and do his surgery right there. By the time surgery is scheduled everyone is there our moms, our pastor, an aunt I haven’t seen since I was very young, and my youth pastor who has a CDH survivor. Dr. Adolph steps out to tell us his specific plan and prays with us. He tells us that he has seen miracles and believes in the power of prayer.

It’s hard to wait for him to come back out. So we sit and wait. My husband insists that I sit in the waiting room where there are padded chairs but there are other moms there waiting to see their precious children (theirs are every bit as precious as mine). Then I hear the worst thing I could imagine coming from another mom in the room. She’s on her cell phone talking to someone and she’s impatient, she tells her friend or whoever that she can’t get in to see her baby because, ”some brat is getting surgery!” I couldn’t believe that someone could be so cold, an infant is in surgery (my infant is in surgery) she had to know mom would be nearby if her baby was being sliced open. I got up and walked out. I’m tired, I’m sore from delivery, and I sat on the floor waiting until it was over.

The doctor comes out after it’s over and tells us it was worse than they thought. Adam was missing the entire right side of his diaphragm. There was no muscle tissue on the inside of his ribs to work with. They had to use a patch and sew it directly to his ribs, all the way around. He has a bad kidney; we don’t know if it has blood flow but we can wait to find out more later his other one is fine. His appendix was not in the right place so we removed it to keep him from being misdiagnosed if he ever developed appendicitis. We spend some more time with him and the councilor helps us get a room at the Ronald McDonald House.

Day 4-13: We got a call at 7 am. Adam had a very rough night. His oscillating respirator broke down and his saturations fell. They tried all they could to bring them back up but his pulmonary hypertension was too high and he was struggling to much. He needs ECMO. We are going to do the surgery right away. Dana (my amazing husband) and I fly out the door to go be with him by the time we get there they have finished and he is stabilizing. I am shocked by what I see, the only emotion that I have truly felt since he was born. There is a 1 inch tube coming from the main artery in his neck to a machine that is pumping his blood out, putting oxygen into it and pumping it back in. We again stay in the hotel (this time as hospital guests whose child is too critical to leave). My mom brings me my 4 year-old and makes sure we have food and necessities. For 10 days we let him rest while under constant care of a nurse and respitory therapist.

Day 14: They tried him off ECMO and he did amazing. They took him off and left him on just his respirator. He was doing well.

Day 15-20 We are letting him rest, letting him get stronger. We go home for the first time in 2 weeks

Day 21: Let’s try him off his respirator, he goes 12 hours before they have to put him back on.

Day 22: Lets try again, We make it!! Adam is breathing on his own. He is maintaining his saturations. They aren’t wonderful but he’s doing it.

Day 23: For the first time Adam is placed in my arms. For the first time I am holding this precious young man. Try feeding him they say. He needs to learn to eat. He will not attach to my breast. He’s throwing a fit. All his life he has had a respirator and tubes shoved down his throat. He wants nothing to do with it.

Day 26 – 60: Adam will not eat, he has to be tube fed and a therapist will come visit him until he does. He is still on oxygen but is transferred to the stepdown nursery. Let him get stronger and he will be able to come home. We are not sure when but he’s getting stronger. He does need another 3 surgeries during this time but they are not the dangerous repair, or the life threatening ECMO. They give him a fundoplication (they wrap his upper stomach around his esophagus to help him keep what he eats down) and place a g tube for feeding because it looks more and more like he will not eat for a long time and he is almost ready to go home. They discover a double inguinal hernia and repair it (he’s a holey kid).

Day 61: We get a call that he will be ready to come home soon, you need to come take your CPR course because we can’t let him go until you are certified.

Day 62: Adam can come home but you have to room in tonight so we can make sure all will be well.

Day 63: Adam is finally released and we go home for the first time, he is in his own bed (he’s to big for that cradle), for the first time I am completely responsible for this little life. My baby boy is finally home.

Since Adam left Ochsner we have been back only for check ups and one surgery. Praise God, his patch has held. He started eating when he was 11 months old, his g tube was pulled out at 13 months. He had almost 7 years of Speech Therapy. When he was 9 years-old we had to have a PDA repair. A valve in his heart did not close at birth like it should have. We were home that night, the repair was outpatient.

It’s been a great time watching him grow to the young man he is becoming. I am truly blessed to be his mom. I guess I’m really lucky as I love my teenagers (Skylar and Adam), watching them become adults is a pleasure. There is a little sister (Katelyn) that came when Adam was 3 (3 months before he turned 4). They are homeschooled because I believe that the education of a child should to a degree be self-directed. I believe that when you study what you are passionate about you will develop a better understanding of it. They are typical kids, video games, bike riding, and friends are what is important.


Thank You for listening to us,

Lisa Thibeau

Mom to a miracle!

 

June 17 - Dear Nicholas Sparks (Guest Blogger Christy Phares)

Dear Mr. Sparks,

This is the story about Jonah Michael, who has shown us how valuable life is and what a blessing a child can be. Jonah was born with a birth defect known as congenital diaphragmatic hernia which is simply a hole in the diaphragm. The diaphragm begins to develop during the 8th week of pregnancy. Jonah’s diaphragmatic hernia was not easily diagnosed during my pregnancy, although my OB/GYN physician did determine during a routine ultrasound that something was wrong with Jonah’s development due to not seeing his stomach, which should have been easily seen during this 18th week.

My physician referred me to a specialist, a neonatologist at the Charleston Area Medical Center (CMAC) in Charleston, West Virginia. Upon my first visit with the neonatologist, it was discovered that Jonah had a bronchopulmonary sequestration on his left lung. So, on a subsequent visit to my neonatologist, he was monitoring Jonah’s sequestration to see if it was in proportion to his body growth. Each visit we were reassured that everything was in order with Jonah’s growth and that the sequestration had not increased or decreased in size.

Due to my husband graduating from medical school in May 2000 and starting his Family Medicine residency program in June 2000, my prenatal care was transferred to Washington, PA. Before our move, my initial OB/GYN scheduled me an appointment with a maternal/fetal specialist at the Physician’s Office Center in Morgantown, WV near our home in Washington. There I had several ultrasounds with my sister by my side. I was blessed to have her there provided she is OB/GYN physician and intensely watched my ultrasounds and even performed one on me herself. She spent the time showing me parts of the ultrasound that were alarming. The stomach was still not present at this time. Possible diagnoses from observing the ultrasound were: bronchopulmonary sequestration, congenital cystic adenomatoid malformation (C-CAM), splenic cyst, and diaphragmatic hernia. Ultrasounds were not conclusive; therefore, a fetal MRI was scheduled.

The day of my fetal MRI, I was so nervous. I knew I would have to lie down inside an empty tube and claustrophobia began to foster inside me. It was a little scary, but somehow I managed to get through it. My films from the MRI would be looked at by a pediatric surgeon and an appointment was already set up for 2 days later. The day of my appointment I met the pediatric surgeon and he had not even looked at my films. So, needless to say, my appointment that day was useless. He knew nothing about my case. I was really upset that day after the appointment and when I told my husband, he was fuming. We did not think I should have gone to a scheduled appointment to learn nothing about Our Little One, Jonah Michael. A day later, my husband was on the phone trying to get in touch with the pediatric surgeon. And finally the surgeon called back and gave us the results of his findings. Jonah had a left-sided diaphragmatic hernia which was allowing his abdominal cavity to go into his chest cavity. This is why the doctors could not see the stomach.

Due to Jonah having a diaphragmatic hernia, he would have to have surgery to close his diaphragm. This surgery was to be performed by the pediatric surgeon sometime after Jonah had been stabilized. Our plan was to have this done in Morgantown where both of our families lived; however, we learned that this hospital did not have a machine known as ECMO (extracorporeal membrane oxygenation). We felt Jonah may need this machine after delivery or surgery and so, we chose to go to a hospital which had this machine. We transferred all my records to the high risk ob clinic at Magee-Women’s Hospital in Pittsburgh, PA. and we changed our course to having my delivery at Magee-Women’s and then having Jonah stay at the NICU in Children’s Hospital of Pittsburgh, where the ECMO machine was available.

We, as parents, were to prepare ourselves for a NICU stay after delivering our little boy. Jonah would be delivered, incubated, and sent to NICU after stabilization. Since my husband did not have flexibility of getting time off from his residency program and this delivery was a crucial time in which he would want to be there, an induction was scheduled for Monday, August 7th, 2000.

I labored for two days starting from the morning of August 7th. We wanted to try to deliver Jonah VBAC instead of having a repeat c-section. First day I only dilated to 2cm, so they decided to take me off pitocin and let me sleep through the night without contractions! I started on Tuesday at 5:00 am with pitocin and cervical gel in hopes of making my contractions stronger and labor faster. My labor did go faster and by the end of the day I had progressed to 9 cm. However, it was at 9 cm I stayed. After 4+ hours I progressed no longer. It was at this time that my OB said we should strongly consider a repeat C-Section. And so we did. I went into the operating room approximately 2:30 am, and delivered Jonah Michael Phares at 4:20 am. Jonah weighed in at 8 pounds, 3 ounces.

As Jonah was taken from the room, I was being sewn back together. After surgery I was taken back to my L&D room waiting to see Jonah one last time before he would be transferred to Children’s Hospital. They brought Jonah in an incubator which scared me as I wasn’t prepared to see him in it. Bob and I said hello to Jonah and told him to be good for the nurses. As I recovered in a private room, Bob rested awhile and then got ready to go over to Children’s Hospital to check on Jonah. I didn’t like being in a different hospital than Jonah, but that’s the way it had to be. Bob told me how beautiful Jonah was and how healthy he looked. In fact, Jonah did so well that day, the pediatric surgical team decided to perform Jonah’s surgery as an "add-on" the next day, Thursday, August 10th.

Jonah had surgery on Thursday at 2:15pm. His hole was as large as a half dollar and he had 3 sutures to close it. When surgery was performed, the stomach was not above the diaphragm, rather the colon (large intestine) and the bowel (small intestine) were. The stomach, spleen and liver were all in normal positions. Before closing Jonah’s incision, the doctors observed another interesting finding, which they removed and sent to pathology. Weeks later we were informed that the finding was a foregut duplication with gastric and lung tissue. We are unsure if this is related to his primary birth defect.

Jonah stayed in the NICU for 4 days and in the Observation Room/10 South for 2 days. He spent the night with his mommy in a private room on Monday, August 14th and came home on Tuesday, August 15th. This is a day we shall never forget. Jonah was a mild case of diaphragmatic hernia; however, the doctors could not determine the severity of his hernia until they actually started operating. The doctors called Jonah a miracle and superstar patient. They were so proud of his accomplishments in such a short amount of time! The doctors were leery about letting Jonah go home so early, but there was not a good reason to keep him there for his birth weight was fine, his stats were wonderful, and his feeding was terrific. Since the doctors were hesitant to let Jonah leave, they felt they had to give him/us something ‘just in case’. So, Jonah left with an Apnea monitor to wear at night or at our discretion. We took the monitor, he wore it once, and never used it again. Bob and I did not think he needed it.

Jonah currently is doing everything little babies do. We are enjoying his energy. He kicks all the time. He loves to talk to us and smile. And we know his lungs work well for he cries loud when he needs us! Jonah’s incision is healing well and is getting flatter each day. We massage his incision every day to help the tissue to heal well. We feel blessed to have such a wonderful little boy who began his life on such a bumpy road. We are eternally grateful that God has brought us Our Little *Superstar*, Jonah Michael, into our lives.

Written by Jonah’s mom, Christy Phares (2001, West Virginia)

June 16 - Dear Nicholas Sparks (Guest Blogger Hope Clyde)

Dear Nicholas Sparks,

I wanted to write you a letter about something that a lot of people don't talk about. Today I wanted to share with you how I felt when I got pregnant after having a baby with Congenital Diaphragmatic Hernia, CDH. I hope you have taken a few minutes to research CDH and know how seriously ill these babies are.

When my son was born with CDH, it was extremely traumatic for our family. We had a 2 year old daughter when we had Tyler. When he was born, the medical interventions used to keep him alive were very hard for us to see him go through. IVs, PICC lines, feeding tubes, ventilators, highly advanced machines keeping my newborn alive. The sounds of the ventilator and monitors, the smell of the anti biotics, the feel of him swollen up on meds to save his life, all of this was very hard for a mother to see.

Well, we got to bring Tyler home. He survived! He was on oxygen for 11 months. Constant doctor visits, loads of medicines, carrying around all the machines to keep him alive. That first year was the hardest year of my life. I weighed his equipment and car seat one day, without Tyler, his "stuff" weighed 75 pounds. Nothing was easy. It was awful but I was so grateful that my son lived! 

As the years went by, we considered having more children but I just couldn't do it. All I could imagine was having another "sick" baby! I couldn't do it again. I barely survived it once! Well, one day, 4 years later, my period was late. How could this happen? We were preventing another pregnancy from happening! I COULD NOT HANDLE THIS. I went in to the the doctor for blood work and it confirmed my pregnancy. 

How was I going to get through this? My mind was spinning. I couldn't talk. I couldn't walk. I couldn't BREATHE! What if I have another baby with CDH? It is possible! I was having flashbacks of our NICU stay, all the medicines, the surgeries, the feeding issues, traveling across the state for doctor appointments, the financial stress, the stress on my body, the toll it took on my family........ How will I survive?

Every day, every minute, I was in total panic. Early ultra sounds showed no sign of CDH in this baby, but CDH can be late presenting. The fear and horror of another baby with CDH was relentless. I vividly remember that I was 6 months into my pregnancy before I found peace. SIX MONTHS! Somehow, I came to peace with the fact that I can't change it if this child had CDH, but I could react different than I was. I had to.

The good news is that we had a healthy baby girl with no problems at all. That pregnancy was such a dark time for me. I was completely out of control with fear and anxiety. We ended up having one more daughter after that pregnancy. That brings our total to 3 girls and 1 boy.

CDH rocked my life and continues to do so when I least expect it. Please help me raise awareness of CDH. With your help, we can change the world. 

Thank you for your time, 

Hope Clyde

Mother of Tyler Clyde, 13 year old CDH survivor.

June 15 - Dear Nicholas Sparks (Guest Blogger Tami Durbin)

Dear Mr. Sparks,

My husband Robert and I were married in 1982 right after I graduated from high school. We both decided to wait awhile to have children, to let our marriage develop a good foundation before we started a family. Six years later we started trying, and it wasn't long until I found out I was pregnant. I was very excited but also a little anxious. I had always been nervous about having children because I was afraid something would go wrong, but my doctor reassured me that things looked fine, and I should deliver a healthy baby. She did mention several times that the baby seemed to have hiccups often but didn't think that it was anything to worry about. I wanted an ultrasound, but my doctor didn't feel it was necessary, since all other tests had come back normal.

We spent weekends shopping for just the right things to fill the baby's room with. We wanted the environment our child grew up in to be a loving one and we made all our choices reflect that one idea. As my due date came and went, I became preoccupied with the child I was about to meet. I was already so much in love with this baby. Two weeks after my due date, my doctor decided to induce labor. I remember as we drove to the hospital, I was thinking, "Now there's two of us, but soon there'll be three." I knew that after this day was over, our lives would never be the same. After ten hours of labor, my doctor became concerned because the baby's heart rate had dropped twice during labor. She decided that instead of risking any further stress on the baby that I should have a Caesarian. My husband was allowed in the operating room, and although we were scared, we were relieved the waiting was over and we'd finally get to see the baby we'd waited so long for. The moment she was born, we were both thrilled to see this beautiful little girl we'd been blessed with. She looked so perfect and healthy.

I kept waiting to hear a cry from her but only heard the sound of the suctioning tube. I twisted my head back over my husband's shoulder and saw the pediatrician gently shaking her but still heard no sound. I kept asking what was wrong, and my doctor kept saying to not worry, the pediatrician would take care of her. He wrapped her in a towel and carried her out of the room. A few minutes later, a nurse came back in and said that there was a problem and the pediatrician would come to speak with us when I was moved to recovery. Since I was still experiencing the effects of the epidural, everything began to seem surreal. I wanted to hold my baby. I wanted them to hurry up and fix whatever the problem was so I could have her with me.

The nurse came in and told us the pediatrician had been on the phone with a neonatal intensive care unit fifty miles away and that they were sending a doctor and nurse by helicopter to transport. Within a few minutes he came in and said he couldn't hear a heartbeat in the center of her chest or on the right side, but finally heard it faintly on the left. This was what alerted him to a potential problem. He had immediately placed her on a ventilator and was waiting for the transport doctor to arrive. A nurse came in and handed us a Polariod picture they had taken of her. This would be the only reminder I would have of her for three days.

When the doctor and nurse arrived, she was placed in an incubator and brought in to us. I was able to touch the black hair at the back of her head. The nurse explained initially she would be stabilized and then taken immediately to surgery to repair what they suspected was a hole in her diaphragm. I asked if she would be all right then, to which she replied, "I don't know." On the way out they asked her name, and I told her Amanda Leigh. I had always loved the name Amanda, and Leigh was a derivative of my husband's middle name. He left immediately so he could be at the hospital with her. Neither of us wanted her to be alone.

The nurse hurriedly moved me to a room where I could watch the helicopter take off. I clutched her picture to my chest and prayed that God would let her live long enough so I could show her how much I loved her.

At four o'clock the next morning the surgeon called and told me that she had survived the surgery. He told me she had a right-sided diaphragmatic hernia, which had developed probably within the first six weeks of the pregnancy. They had decided this because her liver had been small enough to slip through the hole and form in her right chest cavity, along with part of her intestines. The intestines had been moved down but the liver had to stay where it was since it had formed there. She had no right lung and her heart was left slightly tilted. He said she had a fifty-percent chance to survive the next forty-eight hours and beyond that they couldn't even speculate a survival rate. We would have to wait and see.

For the next two days, I waited to get out so I could see her. I slept with her picture on the pillow beside me. Every time I would call, I was told she was still doing poorly, and I was afraid the next time I called they would tell me she was gone. Finally, on the third day, she stabilized, and my doctor told me I could go home if I got some rest. I went right to the hospital. I couldn't believe all the tubes and monitors that were hooked to her. I reached out to touch her foot and was cautioned against it by the nurse. She explained that even though she and I probably both needed the closeness, she just wasn't stable enough yet to tolerate much stimulation. This was the most horrible feeling I had ever known. For so long I had waited to hold her but had to content myself with just looking. I hoped she would sense my presence and know that her Mom and Dad were there for her.

The next few weeks settled into a routine of me being at the hospital all day, every day, standing at her bedside whispering to her, telling her about her room at home, how much we loved her and had waited for her. I must have told her a thousand times I loved her, and I believe she knew it because each day she became more stable.

I took every opportunity to talk to her nurses and try to learn about her treatment and care. Some of them were very positive and supportive. Others seemed almost indifferent to the fact that this was our child that we loved so much, and they took every opportunity to remind us that she was the most severe case they had ever seen and that we shouldn't hold out much hope for her. This was a fact we had faced from the very beginning, but I believed God had worked a miracle letting her live past those first two days. I knew that everyday I had with her was a gift. I was determined to make the most of the opportunity He had given us.

We became close to one of her nurses in particular. Cheryl requested Amanda everyday and cared for her as if she were her own child. She explained to us early on that the decision for our daughter's care was ultimately our choice and that none of the staff would ever feel the love or concern for her that we did. We had the right to question and even deny anything we felt the doctors were doing that wasn't in her best interests. This was a wonderful gesture on her part and one I must say I don't think many others would have done. We felt as if we did have some control over the situation and this wasn't some horrifying roller coaster ride we were enforced to endure.

As devastating as this defect was on her anatomy, she had a strong spirit, and there were actually several good, peaceful days. After being stable for a couple of weeks, they allowed her to come awake, which she tolerated fairly well. I remember many times racing to the hospital to see her, fearful that she had taken a downward turn, only to walk in the NICU unit and see her staring at her mobile, kicking her feet in the air. One day in particular, she was awake and I began talking to her. She stared right at me and wouldn't take her eyes away. It was as if my voice was the most beautiful thing she'd ever heard. The whole world fell away and it was just the two of us. I had never known love like that before in my life. I held her every chance I got and snuggled her as much as I could, knowing that each time was a gift.

In early December, one of her doctors heard a heart murmur, and they discovered that a valve, which normally closes at birth, hadn't. From what I was told, this is a fairly common problem and most times a child is older before surgery is performed to correct it. Amanda had begun to have bronchiospasms and was taking breathing treatments to help oxygenation. We were unsure whether this was an early sign of too much stress being put on her trying to function with one lung or if the heart valve being open would make that much difference. The decision was made to do the surgery in order to give her the best possible chance. In hindsight, I know now it didn't make any difference. The bronchiospasms still continued. She had begun having digestion problems and several different formulas were tried before they found one she could tolerate. She had lost a lot of weight.

Around the first part of January she went into heart failure. Luckily, the doctors were on rounds when it occurred and were right there. They explained that because of a build up of fluid, her potassium level had gotten too high, which led to the heart failure. They had given her Lasix to alleviate the problem. We knew that the time had come. We asked them to stop treating her. The head of the neonatal team agreed to feed her and make her comfortable but make no effort to resuscitate if she went into heart failure again. He told us that in seventeen years of practice he had learned that somehow parents always knew when their child had come to the end of her road. He said that he would respect our wishes and if there were no improvements in two weeks, we would have to make a decision concerning her treatment.

The next few days were so horrible. We sat at her bedside night and day. We didn't want her to die alone. On the morning of Jan. 15th, we decided to go eat breakfast together. She had a bad night but had stabilized a couple of hours earlier. We had just gotten to the cafeteria when we were paged to the NICU unit. Her doctor met us at the waiting room door and said she was gone. The nurse had just recorded her vitals when everything-- heart rate, respiration, everything, just stopped. I couldn't believe she had gone without us being there. I felt like God had waited until I wasn't looking and took her. We held her and kissed her and said goodbye. We left the hospital, just the two of us again.

I don't remember much of the first four months after she died. I relate it to being like driving to work with a lot on your mind. You make the drive, but you don't actually remember doing it. I went to work, shopped, paid bills, dealt with insurance, but don't remember doing any of it. I was just numb. It took almost a year before I could talk about her without crying.

We have since had another daughter named Emma Leigh (after her father and sister). She was born perfectly healthy and the sound of her crying was the most wonderful sound. If there are any parents worried about having children free of defects after giving birth to a child with CDH, it is possible. We have always told Emma about her sister, and we make every effort to keep Amanda a part of our family. We take flowers to her grave on her birthday and her pictures are on our wall and in our wallets. I don't believe someone stops being part of a family or that you stop loving them just because they've died. I don't always talk about her in public because it makes other people uncomfortable, but I will always be so proud of my baby girl. She was one of the strongest people I've ever known.

Sincerely,
Amanda's mom, Tami Durbin (Kentucky) 

June 14 - Dear Nicholas Sparks (Guest Blogger Nancy Bryant)

Dear Mr. Sparks,

We were very excited when we found out we were expecting our first child. Everything was going pretty smoothly. We had a relatively uneventful pregnancy. I didn't have much morning sickness and didn't swell up much until toward the end. On September 21, 2001, our 5th wedding anniversary, I had a routine doctor's appointment. Imagine my surprise when I was told that I was well into labor and 5 cm dilated! We rushed home for my bags and headed for the hospital.

We checked in about 11:00 a.m. through the Emergency Room. (We heard there was less of a wait there!) We were taken to L&D Room 1, where we got settled in. I asked for and got my epidural shortly thereafter; my water was broken and was given pitocin to help things along. About 3:00 p.m. the pain started to kick in, and I soon felt the urge to push. After 54 minutes of pushing, our angel was born at 5:13 p.m. He weighed 8 pounds, 9 ounces and was 21 inches long.

We had taken birthing classes, so we knew pretty much what to expect. As soon as he was born, I knew something was wrong. He was placed on my belly for Daddy to cut the cord, but then instead of leaving him with us to cuddle, he was immediately taken over to a bed in the corner of the room where nurses huddled by. He didn't cry, and when he would try to breathe, his whole little belly would cave in. His Agpar scores were low. I later learned that he was being bagged right there in the delivery room, as they did not want him to try to breathe on his own. The doctor was conveniently blocking my line of sight, but my husband could see them bagging him, and he later told me he thought they were doing CPR.

They took the baby to the nursery before the doctor was done with me. I kept asking if he was OK, and the doctor kept telling me he was fine, but I knew deep down that something was wrong. I wanted to believe him, but there was a part of me that just knew.

They finally finished up with me and were getting ready to move me to the maternity ward, when "someone from the nursery needs to come and talk to you." I thought he was dead. The nurse came in and gently explained that the baby had something called a Congenital Diaphragmatic Hernia (CDH). Basically, the diaphragm is the muscle that separates the chest from the abdomen. His diaphragm didn't close, and had a hole in it. Some of his abdominal organs had come through that hole in utero and had impeded his lung growth on the left side. They had to intubate him because the more he breathed, the more damage he could do. Then he fought the ventilator tube, so they had to sedate him. He would have to be life-flighted to Children's Hospital in Pittsburgh. They had called for a helicopter, and I could see him before he was taken. They wanted us to name him, but crazy me -- I wanted to see him first. Throughout his entire hospital stay, all of his tags said, "Unknown Bryant" because of that!

Around 8:00 p.m., the helicopter was finally there. They had brought a respirator with them, as Washington Hospital didn't have the machine for infants. Up until then, someone had to stand with Patrick, continuously using a bag to push air into his little lungs. He was hooked up to the machine, and I was wheeled in to say hello and goodbye to my newborn son. He was lying there, motionless, seemingly asleep. I got to touch his little hand, but he could not squeeze me back. Saying goodbye to him was the hardest thing I have ever had to do. I didn't know whether I would see him alive again. We named our lovely son Patrick Neil and sent him in the care of the kind transport team. I even remember telling the pilot to fly safely with my little guy -- he must've thought I was crazy!

I was required to stay in the hospital overnight. It was decided that my husband and parents would stay in Washington and my husband's parents would make the trip to Children's to be with Patrick. God bless them. They spent the night in the NICU waiting room to try to give me some kind of peace of mind. I will never forget that. I insisted that my husband and parents go back to the house and try to get some sleep -- we all knew that Saturday would be a long day. I also asked Rick to look this Diaphragmatic Hernia thing up on the Internet and bring me more info.

Needless to say, I didn't sleep at all that night. I tried to watch TV just so it wouldn't be so quiet, but I couldn't stop thinking about Patrick. Rick came in at 7:00 a.m. with some printouts that I later learned were censored for my sanity. CDH affects about 1 in 2,500 babies, mostly boys, mostly on the left side. (That's where Patrick's was.) It requires surgery to repair the hole. I later learned that the survival rate is 50%. At 7:30 a.m., my doctor came in and offered to release me. So after a shower and a little clean-up work, we headed to Pittsburgh.

They try so hard to prepare you for what you are going to see when you go into the NICU, but nothing can prepare you for the sight of your child hooked up to all of those tubes and wires. And then they have to tell you all the things that can go wrong. Mind you, you have no choice but the surgery, but they still have to tell you the possible consequences. It was mind numbing to hear it all at once, while still trying to comprehend that that is your SON under all those tubes and wires. I made Rick sign the papers -- I'm such a sissy.

They had to wait for his stats to stabilize before doing the surgery. The plans were to operate on Monday and they almost went through with that, but they didn't like the looks of the pressure in his lungs (pulmonary hypertension). So then they thought they'd wait until Wednesday. Well, on Tuesday, he looked so good and stable that our surgeon, who was OFF that day, came in and performed the surgery at 5:00 p.m. They did his surgery right there in the NICU; they were afraid he might destabilize if they tried to move him. Just past 7:00, they came out to tell us it had been a success. The hole was small enough to repair without needing a patch. His small intestines, spleen, and part of his large intestines were in the chest cavity. Fortunately, his abdomen was large enough to hold all of them, so everything was repositioned, the hole was closed, and the healing could begin. But now the hard part would begin.

For days they worked on getting the respirator settings down. They were slowly allowing him to wake up enough to take some breaths, but worried because he was breathing at a fast rate. One day he tried to pull out his vent tube, so they tried to take him off the machine, but he wasn't quite ready. Two days later, they took him off the vent for good. They were a little worried about how his digestive system would process food through his stomach, as all of those organs were out of his body during the surgery. So they very slowly started to turn down the IV feeds and increase the feeding tube amount. They had to use a feeding tube, because they were afraid to feed him orally right away because his breathing rate was so high, they feared he would aspirate. Finally, he was allowed to start bottle-feeding. I had been pumping and pumping, so he was started on my milk. He took to the bottle really well, and after a few days, we were allowed to start nursing. He was eating really well before long and gaining weight. As long as he continued to gain weight, we could finally think about going home.

Finally, on October 15, 2001, Patrick was able to come home from the hospital. Of course, we also brought home lots of equipment:  monitors and oxygen tanks. He also came home on two reflux medications. But he continues to improve at a fantastic rate. He was off the monitors by Thanksgiving and off the meds soon after. We were housebound for the winter, though, with instructions to stay away from crowds and children, and he had a Synagis shot every month for RSV protection.

Patrick is now a happy, healthy 10-month-old, weighing in at 25 pounds and 30 inches long. He loves cereal and baby food, and sleeps all through the night, from 8:00 p.m. to 7:00 a.m. He is a very pleasant baby to be around -- he's got a great laugh and a big smile. To see him now, you would never know that he had these problems. But to us, he will always be a miracle. We returned to Children's in May for another follow-up with the surgeon and his xray shows that his lung is already growing. We continue to hope and pray that he will have no long-term effects from his CDH.

I know it is the love and prayers of our family and friends, the skill and talent of the doctors at Children's that have caused Patrick to be with us today. I will never forget the support we received from so many different places. We are so blessed in so many ways.

Sincerely,
Patrick's mom, Nancy Bryant (Pennsylvania)