July 14 - Dear Nicholas Sparks (Guest Blogger Sara Givent)

Dear Nicholas Sparks,

    In the summer of 2009 my life was changed forever by three (not so little) words, congenital diaphragmatic hernia or CDH. I had never heard of CDH, and apparently neither had my doctors.

    My husband and I went in for a routine anatomy ultrasound at 18 weeks pregnant. We had already had two perfect children, a boy and girl, so I convinced my husband that this time we shouldn’t find out the gender of the baby until the birth. Partway through the ultrasound the tech left to go get her supervisor, for a brief moment my heart stopped. I had been in this position before with my first pregnancy (it was my first ever ultrasound and I didn’t know that what I was seeing on the screen was missing a heartbeat until the tech brought in a supervisor who then explained that we had miscarried). But I pushed those fears aside quickly because that was the first thing I looked for at every ultrasound, and it was there beating strong. The tech came back with her superior and together they finished the all the measurements. Before we left, the tech asked if we were sure we didn’t want to know the gender of the baby. We assured her we wanted to be surprised, so she wrote it down and sealed it up for us, just in case.

    After our ultrasound we went upstairs to our doctors office. Dr. Mahlab entered the room and did not sugar coat it. “Your baby has congenital diaphragmatic hernia, it’s a condition where there is a hole in the diaphragm allowing the stomach contents into the chest. There is very little chance of survival.” My world stopped.  He couldn’t even tell us anything more about CDH, or possible outcomes. He didn’t know, he even spelled it wrong on the slip of paper he wrote out for us. Doctors at a major hospital, Dartmouth Hitchcock, didn’t know anything about the condition that was threatening to take my baby away. He then set up an appointment for us to see then geneticist  in one week, then left us to gather ourselves before we left. My husband and I cried together for a bit, then we opened the envelope. We were having a little girl.

    That afternoon we went home and broke the news to close family. Then like anyone facing so much uncertainty and devastation, I took to the internet to find some answers, or at least some information.  There wasn’t much to look through, plenty of doom and gloom, but then I found a group called CHERUBS. There were others out there that have been and are going through what we were going through! The odds weren’t great but 50% had a lot more hope than the doctors had given me. She had a chance.

    We had a slew of appointments and test with Dartmouth before we were finally able to be referred to Boston Children’s Hospital for a second opinion. Dartmouth made us wait until a couple months before our due date. They said that they wanted to have as much information available to see if it was a case that they would take on. Looking back now, I know I should have just gone around Dartmouth and talked directly to BCH, as they were surprised that Dart waited so long to refer. I’ll never forget how I felt that night we left Boston after a full day of appointments, ultrasounds, MRIs and consults. It was like a second wind, they were so positive and experienced with CDH. They had a survival rate of 90% at their hospital. Dr. Wilson had been working with CDH babies since the 80’s and he had an amazing passion for their care. Boston was it, we would have our baby- Mallory, at the Brigham hospital, and she would be immediately brought to the Children’s hospital via a bridge connecting the two. Now all we had to do, was monitor and wait.

    On January 4th 2010 we went down to Boston to be induced. That night as labor was progressing things took a turn, and Mallory was in distress. They began prepping me for a cesarean section, which was devastating. It meant on thing to me, it would be much longer before I could be cleared to go see Mallory after she was born and bought over to the children’s hospital. When we arrived in the operating room they decided to try one more time to deliver Mallory without c-section, and they succeeded.  They brought her over to my bedside so I could kiss her sweet little head, then brought her immediately over to the corner of the room to intubate her and prep for transport. My husband and I had decided that once she was born he was to stay by her side, so in a matter of minutes they were gone, and soon I was all alone in my hospital room. It was the most alone I have ever felt.

    Finally three hours later the nurses cleared me to go visit Mallory, my husband came back and wheeled me to the adjoining hospital. It was one of the hardest things to see. She was so tiny among all the tubes and wires and Ivs, and her little chest was rising and falling so fast. I couldn’t touch her, or even speak in more than a whisper or her stats would drop and monitor alarms would ring. This was the first day of her 192 day hospitalization. Everything was still so up in the air.

    On January 8th 2010 Mallory was put on ecmo (a heart and lung bypass) due to severe pulmonary hypertension. Then on January 9th while on ecmo Dr. Jason Smithers performed her repair surgery. They brought her intestine, spleen, stomach and liver down from her chest and cover the hole in her diaphragm with a gortex patch. Surgery went well, and things were pretty quiet for a while. On the 18th they were able to take Mallory off of ecmo.

    On January 23rd My husband and I were asleep one floor up in the parent sleep spaces, when we got a call at 4am. Mallory was crashing. Her oxygen levels were in the 20’s and her whole body was grey. She was given a 10% chance of making it through the day. I remember when it really sank in that she was dying. One of her nurses came over to me, and said “at any point if you want to hold her, you just say the word.” at this point we hadn’t gotten a chance to hold her yet, and now she was dying. I had to call my mother and try to get the words out of what was going on, and that she needed to get here as soon as possible to meet her grand daughter before it was to late. My husband got on the phone to our church,  soon my parents arrived, and all we could do was pray and wait. It was the most unreal day of my life, like a foggy dream. Finally around 3pm she came out of it. Her oxygen came back up and her skin regained color. It was a miracle. Even Dr. Wilson was amazed.

    On March 12th  2010 Mallory came of the ventilator for the first time. For the first time since her birth I got to hear her cry. She was put onto a cpap machine. Unfortunately eight hours later her stats dropped, and the decision was made to reintubate. Luckily Mallory’s nurse was able to let me hold her for the first time ever while the prepped. It was brief, and she was sedated, but I will never forget that moment. Ever. They were able to extubate her again to cpap on the 16th of march, this time for good. She stayed on cpap for two weeks before transitioning to oxygen canulas, which she kept until he was one and a half years old.

    In May of 2010 Mallory was able to move from the MSICU to a regular inpatient room. She had he second surgery in May as well. They put in a gtube and did a nissen fundoplication, because she had oral aversion from spending her first three months on sedation and paralyzers, and she was high risk for aspiration.

    On July 14th 2010 Mallory Miracle May Givent came home. It wasn’t easy, she came home on oxygen, a feeding pump, helmet to reshape her head, and a handful of meds to be given multiple times throughout the day and night. We had an in-home nurse, and physical, occupational and speech therapists came to the house until she turned three, then she began going to our local school for these services (she still receives all three to this day). Mallory’s most recent surgery was a rod fusion surgery for her scoliosis (quite common in CDH survivors) in April 2015. She has amblyopea as a result of all the medicines and sedatives from when she was a baby, so she is currently working on correcting that with glasses, although it looks like surgery might end up being her best option.

    After everything Mallory has been through, and will continue to have to deal with, she is the most amazing ray of sunshine I have ever met. We are so very blessed that she was able to pull through and come home with us.  There are so many that do not survive. This is why research and awareness are so important to me, and why the CDH community would truly appreciate your help in raising awareness. Thank you.

Sara Givent

July 13 - Dear Nicholas Sparks (Guest Blogger Anne-Marie Huffman)

Dear Mr. Sparks,

We have two beautiful boys, Benjamin and Jonathan. We learned that we were expecting when Jonathan was 8 months old. We learned at 20 weeks gestation that we were having a girl who had a Congenital Diaphragmatic Hernia (CDH). This came as quite a blow, especially after our son Jonathan had just been diagnosed and had surgery for neuroblastoma (cancer) just 3 weeks earlier. We were numb. We had an amniocentisis to check for genetic abnormalities, since her ultrasound showed a growth on her forehead. After a VERY LONG 10 days we found she was genetically normal. We had a visit to the Indiana University Medical Center and Riley Hospital for Children scheduled for us for February 15, when our son Jonathan was due to have his next CT scan.

The fifteenth was an overwhelming day, ending in a fetal MRI for mom, an ultrasound with the perinatologist and cardiologist, a meeting with Dr. Trautman (in neonatology) and a meeting with Dr. Deborah Billmire, who was to be Elizabeth's surgeon. We left completely exhausted, but very confident in Elizabeth's future doctors. Every question we had was answered in full (of course we always heard, "You never know until the baby's born").

We arrived back at IU to be induced on Monday, March 25, 2002. I was 38 weeks along. I received a pill to prepare my cervix, since I had not started to dilate. Labor began after about 6 hours, and that night I had some Nubane to allow me to rest a while. I woke up around 6:00 and knew I was in transition. There had been trouble finding Elizabeth's heartbeat all night, so I requested that they check her position now, since I was very near delivery. I had a great deal of fluid, due to the CDH, and Elizabeth had turned again to a breech position. I felt the urge to push and summoned the doctor. I ended up with general anesthesia. Elizabeth's feet were already in the cervix. She was born via c-section at 7:28 a.m. My husband, Steve followed Elizabeth as they tried to stabilize her at IU. They transported her to Riley through the tunnel where she arrived at 9:30 a.m. I was waking up in my room with Steve when Dr. Billmire called. She said Elizabeth's oxygen level was at 50% and asked if we wanted her to go on ECMO (Extra Corporeal Membrane Oxygenation). There was no alternative but death, so we agreed.

After the surgery to put Elizabeth on ECMO, I was able to see her. I had a LONG wheelchair ride through the tunnel to the NICU at Riley. Elizabeth was so beautiful. The growth on her forehead was just a hemangioma (birthmark that fades over time). We could not hold her or stimulate her much, due to the ECMO cannulas in her neck.

Six days later, Elizabeth would have surgery while on ECMO. She was not able to progress any further without it and needed more lung power. Her liver, intestines, spleen, and stomach were in her chest cavity and were keeping whatever left lung was there from expanding. We prayed there would be some lung on her left side to assist her larger, but smaller-than-normal right lung. The surgery went very well. Dr. Billmire went over what happened and that even though it went well, we still did not have enough evidence to show whether she could survive. Her lungs expanded and each day we checked her X-rays and blood gases to find evidence of progress. She soon seemed ready to be taken off of ECMO. After several days of weaning (up and down on the ECMO support level), she seemed to be doing very well at a low level.

On Friday, April 5, she was removed from ECMO. She seemed to be doing well at first, but that night was AWFUL. She seemed to have developed pulmonary hypertension. The cardiologist was summoned in at 10:30 p.m. to do an echocardiogram. I listened to a very sobering description of the implications of this problem. Basically, it was not easy to resolve in any short amount of time. I went back to our hotel to get some rest. At 1:30, Dr. Evan Kokoska called me and said that my daughter was doing very poorly. I asked how long she would last, and he said it could be several hours. I said a prayer for strength to accept God's will for us and left for Riley.

When I arrived, a very tired Dr. Kokoska and her nurse Mary Lynn, had done all they could think of. I sat down with Elizabeth and prayed and talked to her. About 20 minutes later, little drops of urine started dripping from her Foley, signaling that kidney function was resuming. Praise God! Elizabeth made a comeback and continued to progress all through the weekend. It was Sunday before I began to progress from the shock.

The week went well to begin with. Her paralysis was stopped Tuesday, and she started producing stools. She was allowed her first tube-feeding Wednesday night. I came back to the hospital, excited to see how it went. While she was keeping the milk down, her oxygen and blood pressure were not as steady. I went home and was in contact with Kelly, her nurse, every few hours. She called at 6:15 a.m. and said that Elizabeth was back on the oscillating ventilator. I knew that wasn't good. I got to the hospital at 8:00 and waited there all day as her doctors tried many things to get her oxygen levels to improve. They were around 80 most of the day, but dipped into the 70’s and even 60’s at some times. I called my husband to start driving from Mishawaka. I knew from her experience Friday, that they had done everything they could think of, and she was still not improving. At 5:00 p.m. when Steve arrived, we talked to Dr. Billmire about her condition. She would probably not survive the night. We were so thankful to Dr. Billmire throughout this that she was always calm and honest, not giving us false hope or telling us what we wanted to hear. We sought her out whenever we wanted to REALLY know how Elizabeth was doing.

We brought our sons back to the hospital to see their little sister for the first and last time (it was RSV season and they were not allowed in prior to this). Everyone was very understanding and helpful. The nurse put curtains up around our bed so we could have privacy, and at 9:00 p.m. we asked to be able to hold her. She was still on her oscillator and all of the wires and tubes, so this was a feat. I held my Elizabeth Joy for the first time. She was so light. After four hours, Steve took a turn. I sat with them and watched her color fade and knew she was slipping away.

We had the most wonderful nurse in the world, Cheryl, who, with a cheerful face, helped us accomplish all of our firsts with Elizabeth as the happy, bittersweet moments that they were. She and another sweet nurse helped us make a hand cast of her beautiful little hand, and brought us drinks and food as necessary. I took Elizabeth back from Steve, and we talked with Dr. Torrine (her neonatologist) about what to do next. This woman was amazing. Pregnant herself, she was there all night and helped us say goodbye to our sweet Elizabeth with compassion and skill.

I knew that Elizabeth was not really with us anymore, but her heart was still beating. First, we turned off the dopamine and dobutamine, which didn't do much. The oscillating ventilator was keeping her heart beating, although her little body could not be surviving at her oxygen level (30 at this point). I held her and helped remove the ventilator. This was the first time I'd seen her without her vent taped to her face. She was so beautiful, with sweet little lips and a tiny, perfect nose. I held her close and sang her a special song that I’d sung to all my children as I rocked them to sleep. Dr. Torrine came to check her about 20 minutes later, and she had gone. I had to say goodbye to my little girl, who I'd only given birth to 17 days earlier. We have no regrets and cherish those days more than anything on earth.

Our little treasure, Elizabeth, is in heaven, but we have a great treasure in the incredible friends in Christ we have here. There will be a day when I go to meet Elizabeth. I long for it. Yet I know that I have two little boys who need a mom to help them accomplish what God has planned for them. In heaven, we'll be a family of five once again.

Sincerely,
Elizabeth's mom, Anne-Marie Huffman (Indiana)

July 12 - Dear Nicholas Sparks (Guest Blogger Monique Clarke)

Dear Mr. Sparks,

Nathan was diagnosed at 21 weeks in utero with a L-CDH. That was a day to remember, all these words the doctor was saying, what did it all mean? After that we had so many tests and scans for the rest of my pregnancy. They told us our baby had less than 50% chance of survival.

I just wasn't prepared for it. I remember it like yesterday right on my 40 week check up they told me his heart beat was strong that was it, I cracked after all this time. I remember saying "Then why is my baby going to die?" That was it. The doctor wouldn't let me go home. They took me up stairs to bring him into this world.

It was the longest 2 hours of my life because here I was fighting not to give birth to him, maybe I thought if he stays inside me he is safe. I remember there was me, my husband and a nurse then bang the room was full of doctors and others. I didn't even see or hear him cry. The doctor brought a photo of him into us to show what he looked like.

When we got to see him there where so many tubes and he was paralyzed so he didn't move. I remember my father saying he looks like a remote control doll and with that he left the room. I think I must have spent nearly all night in with him just looking at him. Here he was normal size yet fighting for his life.

Exactly 24 hours later they came and told us he was stable so they would operate. We waited and waited then someone asked us too follow them, we both thought that was it, something had happened. But when we got over to the children's hospital a doctor explained what they did and how they did it. Nathan's stomach and intestines where up in his chest cavity, his heart was pushed to the right and his lungs were very small and squashed.

Nathan has had 2 repairs now and has been in and out of hospital with gut and bowel obstructions for 11 years. Nathan has asthma and a small hearing problem. Late last year he was diagnosed with Asperges syndrome and now with coeliacs disease. We are now waiting for a bowel bi-opsy to see if there is any damage to the bowels. Nathan has had speech therapy, occupational therapist and physiotherapy. Nathan also has scoliosis. He even went bold at one stage! Nathan has had teeth problems in the past too.

Nathan was born a fighter and still is, he does not get a temperature like every one else he goes cold and clammy. Nathan has a very high tolerance to pain its like he doesn't feel it. Nathan is very good with maths and science but his writing just doesn't connect, a small motor problem.

Nathan is a very special little boy he looks like other boys his age but he's not.

Sincerely,
Nathan's mum, Monique Clarke (Australia)

July 11 - Dear Nicholas Sparks (Guest Blogger Nikki Hodson)

Dear Mr. Sparks,

When I found out that I was pregnant both Darren and I were so excited, we had just married a couple of months earlier, and everything seemed to be falling into place nicely. I was lucky with my pregnancy I had no morning sickness, I felt great. We were going to a local GP for our antenatal visits. When we heard our babies heart beat for the first time it was so exciting, it was spot on he said, so we had no reason to have any concern. Our GP did not have the facilities for scanning so we were sent along to another Doctor for it at 20 weeks, we were so excited, we took along a video tape to record the moment.

The Doctor scanning us didn't say anything until I was about to hop off the bed when he just casually said, "your baby has an abnormality, I suggest you terminate" and with that he left the room. Once we went into the other room where he was he asked us if we had any questions, we asked a few general ones, such as what are the babies chances, what was wrong with our baby. He said that he didn't know, and that he would refer us to a specialist in Wellington Hospital. That was on a Friday afternoon, so we were left for the whole weekend only knowing that our baby could die, because there was something missing and the stomach was in the chest. Not much to go on, but I got on the Internet and found CHERUBS, I wasn't even sure if I had the right defect! I read some of the statistics and held on to the positive ones.

On the Tuesday of that week we had our appointment at Wellington Womans Hospital, it was confirmed our baby had CDH, but she had a chance and we were hanging on to that. We would out her sex, because I needed an identity to my unborn child, my Mum went along to, to help is digest all this information.

The rest of my pregnancy I tried to stay positive, we had to go to the Hospital each week for a scan. I developed polyhydramnious and was "drained" four times, with the average of about 1.5 litres being taken out each time, it certainly wasn't pleasant, but it was a small price to pay for my little girl, who we had decided to name Rebecca, Becky for short.

We were told that Rebecca had no obvious liver in her chest and that was supposed to be good news, we had an amniosantesious, and that came back fine, so Rebecca had no other complications. We were told what to expect when Rebecca was born, we weren't going to be able to hold her, she would be rushed away, things will be up and down est. thought I was prepared.

At 38 weeks I was induced, I was lucky I had a relatively easy labor I had Darren and my Mum, my midwife Catherine and a team of NNIC nurses waiting (my Dad and sister waiting outside), Rebecca was born at 8:43pm, my midwife put her in my arms for a few seconds, I got to say Hi to her and introduce myself, I told her I loved her and I gave her a kiss, she had one little eye open looking at me, then they took her away. Darren went with Rebecca to the neonatal unit. I didn't see her again for a few hours. Rebecca's doctor came and saw us before we went to see her, he said that things weren't good, she did have some liver in the chest, and she probably wouldn't make it through the night.

When I finally got to see her, she was so beautiful, I couldn't believe that this was my little girl. It was so strange, she looked perfect, how could she be so messed up inside. I didn't even notice all the tubes, all I kept hearing was the machines beeping, it was horrible. She had already been medically paralysed, so her body just lay there, I held her hand all night.

The next day things hadn't improved, so they inserted a chest drain to get some extra fluid out of her chest, it helped a little.Then for days after that she only improved only a little. Rebecca got really puffy because she was paralysed I was sick of hearing people say how big she was, she was born 2685grams, hardly big. Rebecca had big feet, just like her Daddy, some newborn booties were even too small!

Things just continued at that point, she got a longline just before Christmas, but then on Christmas Day she started to go downhill, her longline had an infection in it, not only that, so did her ventilator tube. We took all Rebecca's Christmas presents to the hospital and opened them there, telling her what they were (still paralysed).She slowly got a little better after those infections had been dealt with, so on New Years Eve they decided to take off the paralysing drug.My baby opened her beautiful eyes, they were dark blue. She held my finger, she even smiled, it was wonderful. She was weaned off Nitric, off the blood pressure drugs, things were looking good. This lasted for about a week then she went downhill again. Yet another infection had invaded her little body.They told us that she was going to die within a

couple of days, the surgeon gave us an option, we could let her die slowly over the next few days, or we could let her have the operation, but she would probably die on the operating table. We decided to go for the operation, we had come this far I still had to give her that chance, the operation was to be the next day. I stayed with Rebecca for the whole night, we were luckily able to stay at the hospital for a couple of nights.

The next morning I read to her "Green Eggs and Ham." I cried most of the way through it, she was awake for the whole morning until just before we took her to theater. She was aloud to take her Winnie the Pooh with her, she would have loved that. We said our goodbyes, not knowing if we would see her alive again. We waited and waited we were told it could take five hours. But two and a half hours later we were told we could go and pick her up, she had done wonderfully through the whole operation, and she had a patch on her diaphragm.We got her back to NNICU, and she was doing great, oxygen requirementswere great, ventilation was being weaned.

Then again backwards, and from there slowly it kept going downhill. I think at that stage I knew that she wasn't going to make it, On the Saturday night I stayed up all night with her, she was awake the whole time too, we had a great time, I even "played" with her. She had a paddington bear hanging from her open incubator and she loved to watch him, and I was swinging him around, she loved it, she even threw in a few smiles for me, and would pucker her lips when I kissed her. On Sunday I said told Darren he couldn't go to work the next day, I knew Monday was her day.We went in on Monday morning and her saturation were in their 30s.I read Green Eggs & Ham again, she opened open eye and watched the whole time I read to her, she was so weak. The Nurses said not to touch her that she was fragile, I told them I wanted to hold her, she was going to die and I needed to hold her.

The nurses got me a chair and placed my little girl in my arms, held her for a couple of hours, so did Darren, it was such a confusing time, having waited so long to hold her, but knowing that by the end of the hold she would have gone. The doctors then decided to turn off Nitric and that she may not cope without it, if she did we would be able to move to another room for privacy, so I held her again. Within 30 minutes she had gone, I told her she could go, that it was alright, it was the hardest this I have ever said. I am glad that I told her that because everything else we ever asked of her she never let us down, and I didn't want her to feel as though she had with this. They took out Rebecca's tubes, we then bathed her and dressed her, she looked so beautiful in her Winnie the Pooh outfit which we got her.

I don't regret any of our decisions that we made for Rebecca, I miss her terribly, but this time with her is irreplaceable and her siblings to come will be told wonderful things about her. I still talk to her all the time and write to her in her journal, I tell her how much I love her most. She is the best thing that has happened to me, and my time with her was amazing.

At Rebecca’s funeral so many people came it was amazing to see how may people cared, I don’t really remember much of the service, only the part where we placed her in the ground, and even then it is me looking from above, I guess I was with her. We played her song "Don't Wanna Miss A Thing." After the service we wrote messages on balloons and sent them to Rebecca, so now when I see a rainbow, I think of Rebecca playing with her balloons, and I know that she is happy.

Sincerely,
Rebecca's mom, Nikki Hodson (New Zealand)

July 10 - Dear Nicholas Sparks (Guest Blogger Linda Clarke)

Dear Mr. Sparks,

My pregnancy was totally planned. 6 months prior to attempting conception I stopped taking birth control pills, stopped drinking caffeine and stopped all alcoholic consumption. In September 1995 I became pregnant. I have always been very athletic and continued running up through my 7th month. My pregnancy was very easy, no morning sickness, no swelling, slow, steady weight gain. In February, during a routine, mid pregnancy ultrasound the technician discovered a two-channel umbilical cord. Normal is three, 1 artery and 2 veins. I was told that this is indicative of kidney problems, but the probability was very low. Most babies have no problems what so ever. I made an appointment with the Maternal Fetal Center in our hospital where I had a second level ultrasound. Dr. Susan Rutherford looked everything over thoroughly and said that there were no problems associated with the two-channel cord, however she said that she had found something else. At that point she indicated the dark mass on the screen in the same view as the heart, which you could see pumping. She said this is the baby's stomach, which should not be anywhere near the heart. She immediately diagnosed the Diaphragmatic Hernia. From that point on Michael (my husband) and I spent a great deal of time planning the birth of our baby. We met with Dr. David Tapper, chief of pediatric surgery at Children's hospital in Seattle. He described for us what to expect. He personally gave us a tour of IICU and introduced us to the support team. We met with Dr. Badura the neonatalogist who would stabilize our baby after delivery and prepare him for the trip to Children's. We put a birth plan together with Ann Kepler, co-author of Pregnancy, Birth and the New Born. She did a wonderful job helping us lay out all the events and things we wanted to have done during the birth. We talked endlessly with Fr. Andy, our priest and we were all prepared for whatever God had the plans. Everyone was wonderful.

June 14th came and went with no baby. Dr. Wayne Hill, my ob/gyn and I decided that we would induce labor. This allowed us to schedule all the specialists and equipment required to stabilize Jamie immediately after birth. On June 17th I went home with a vaginal catheter which began dilation. At 7:00 am June 18, 1996 I checked into Evergreen Hospital and at 2:00 pm after a very easy, pitosin induced labor our beautiful boy, Jamie was born. Jamie let out a huge cry and was passed immediately to Dr. Badura who established an airway and put Jamie on a ventilator. Michael performed Jamie's baptism and at 4:00 Jamie was ready to be transported to Children's Hospital. I was able to kiss him goodbye and off he went. Michael followed behind the ambulance and got Jamie settled in. I joined them the next morning. What a strange, empty feeling to be in a hospital without a baby after labor and delivery. Jamie's hernia was repaired on June 20th. Dr. Tapper was able to use existing tissue to repair the defect. We spent the next 4 weeks working on getting Jamie home. It seemed like such a long time. I would be at the hospital for 15 hours a day reading and talking or just sitting with Jamie. We live in Seattle, so I was fortunate enough to be able to go home every night. Jamie made great progress. There were no other defects. We attempted extubation at the end of June and he just wasn't ready. I was able to hold him with all the equipment installed the next day. What a joy, I just cried and cried as I rocked him. He probably thought I was nuts. He was finally extubated on July 4th (new meaning to Independence Day). The next hurdle was eating. We spent the next two weeks weaning off of the dietary supplements and drugs. He was a champ and ate with fervor. The nurses attempted an NG line to his stomach and he pulled it out within minutes he only wanted a bottle. He was transferred out of IICU on July 11th and on July 18th, one month after delivery, we took him home. It was a beautiful sunny and warm summer day.

I must acknowledge the nurses who cared for Jamie for those weeks. They are truly the heroes in this story. They work long hard hours and have the most difficult, demanding job I have ever seen. And yet, they always have the time to tell you what is going on, what progress has been made, what is your next goal, as well as that shoulder for the difficult times. We visit the hospital regularly to keep in touch with everyone. The experience has been a good one for Michael and me. It has opened our lives to a whole new group of people, both at the hospital and in our church, who are now as close to us as family. I feel terribly blessed and fortunate it has all worked out so well. Jamie is two and doing just great. All he has to do is be a kid!! When you see him with the other children, you could never tell what a difficult start he had. What more could a mother ask for???

Sincerely,
Jamie's mom, Linda Clarke (Washington)

July 9 - Dear Nicholas Sparks (Guest Bloggers Mic & Heather Hirst)

Dear Mr. Sparks,

I hope you would like to share our happiness at the birth of Thomas Oliver in June last year after losing Molly Iona and Megan Iona to CDH conditions over the last five years. He is quite the most healthy, lively and happy baby and proves that despite having had to suffer the depths of despair there can be light at the end of the tunnel.

When we got over the initial shock when Molly was diagnosed with CDH at her first scan we tried to take a pragmatic view of our circumstances which was easy when there was hope. We took all the advice and tests and had muted hopes of a successful outcome which regrettably did not come to fruition. Despite all the best efforts of one of the best paediatric care facilities in the country she was too broken to survive and died in our arms after we turned the ventilator off two days after birth.

Times were bad after that for some considerable time. The funeral was awful but we got through it, just. We talked to anyone who would listen and tried to rationalise the biology of what had gone on whilst wrestling with the emotions of losing a child who we had not even got to know.

Nevertheless we tried again on the basis that lightning was unlikely to strike twice. Mother Nature however played her tricks again and Megan was diagnosed with an even more acute condition at a late 'reassuring' scan. She again died shortly after birth.

We were even more devastated this time having gone through all this once before, and the grieving was even more difficult having prepared a nursery on the basis that this time we would have a healthy baby. Times were hard again.

Thomas was a welcome accident. We always wanted to try again but never had the courage to make a serious decision which would have been too difficult to make. He should have been a shopping trip to ASDA.

All the way through the pregnancy we received all the support we could have wished for by way of scans, MRI's and counselling from the most wonderful people you could ever wish to meet all who had shared our previous disasters. This time they were right and we have Thomas Oliver.

As you can probably appreciate I could eulogise on this subject for hours in respect of the depths of despair to the heights of joy and all points in between. You can never second-guess other people's emotions when faced with the kind of trauma which has to be addressed when any person close to you is lost and we would never try. I do however hope that this short and somewhat stilted story of the worst and best period in our lives will give hope that there can be a happy ending.

Sincerely,
Molly & Megan's parents, Mic & Heather Hirst (Great Britain)

July 8 - Dear Nicholas Sparks (Guest Blogger Brenda L. Eaken)

Dear Mr. Sparks,

Back in 1974 I became pregnant for the second time with my son, Rick. Our first, Jennifer who was only 7 months old at the time, was healthy and a joy so we were thrilled with the idea of another baby so soon. I thought my pregnancy was normal until my 8th month. Since my obstetrician must have also thought things were fine, no tests were ever ordered. I found out later that I had developed polyhydramnios during pregnancy, which would have accounted for my large weight gain and trouble breathing. But other than that, I always felt excellent during both pregnancies and didn't even experience morning sickness.

About five weeks from my due date I started having what I thought were Braxton-Hicks contractions in the middle of the night. Since they were coming irregularly I waited for a few hours. They suddenly stopped and I fell back to sleep. Upon waking in the morning I phoned the doctor to inform him. He suggested making my next appointment in ten days rather than two weeks. Oh boy, such concern! When I was examined he told me I was already half dilated and told me to go home to bed. Why I wasn't hospitalized, I'll never understand. But at the time, I was young and naive and thought all doctors were saints. Three days later my water broke and I immediately went to the hospital. After a few good contractions, Rick was born about four hours later following a natural, no med delivery as his sister was. He was instantly found to have a problem (he was bright blue). I was allowed a quick kiss and he was whisked away to the pediatrician. The pediatrician on call that night first thought it was a collapsed lung and ordered x-rays. Upon viewing them, he identified his problem as CDH. Thank God for Dr. Robert Childs of Hazleton, PA. He had just finished his residency at Hershey Medical Center where he had seen numerous cases. The decision was made to transfer Rick there. Unfortunately, it was a very foggy night and the State Police helicopter was grounded. So Dr. Childs accompanied the ambulance crew and Rick's Dad, all the while monitoring and squeezing the ambu bag to assist Rick's breathing. The doctor in charge of him at Hershey, Dr. Shochat, performed surgery on him at nine hours old. We were told he had a 10% chance for survival. Without getting into all the details here which would lengthen this considerably, I'll say that after a rocky start Rick slowly improved and was discharged home to us after seven weeks. He only had one other surgery at four weeks old. In the beginning his left lung was only a "bud" and since he had high concentrates of oxygen they couldn't tell us what the future held. But we didn't care. They told us to take him home, love him and allow him to grow and act as any other child. Loving him was easy and luckily, we were blessed with no other long-lasting effects from the CDH. After only a few checkups at Hershey it was found that his left lung had expanded and he has no vision impairment from the oxygen.

Throughout his childhood Rick behaved as normally as any child I've seen. He was a healthy, intelligent, handsome, loving boy who grew to a man with the same attributes. We've just enjoyed a year of having him home with us after serving six years in the Navy aboard an aircraft carrier. Having him home completes our family again with his 26-year-old sister and 15 year old stepsister. I am truly blessed to have such a great husband and family.

Sincerely,
Rick's mom, Brenda L. Eaken (Pennsylvania)