Tuesday, June 30, 2015

June 30 - Dear Nicholas Sparks (Guest Blogger Jamie-Lane Campbell)

My name is Jamie-Lane Campbell. I am sixteen years old and going into grade eleven in September. My boyfriend is Troy Noseworthy; he is nineteen years old and working full-time at our local mill. We are from a small town called Fort Nelson, British Columbia. There are only about 5,000 people that live here, so when a teenager becomes pregnant, everyone knows about it.

We found out I was pregnant, and I thought my world was over. My parents were EXTREMELY angry with me and Troy because we were so young and not ready to be parents. I, personally, do not believe in abortion, so we kept the baby. I got an ultrasound done, and my doctor called me that night and informed me there was something wrong in the ultrasound. We don't have a great hospital here, so he sent me to Edmonton to the Royal Alexandra Hospital to get a better ultrasound done there.

The same day I had my ultrasound in Edmonton, the doctor informed me my baby had a diaphragmatic hernia. I was terrified. It was bad enough being 16 years old and pregnant, but now there was something seriously wrong with my baby. My parents went to Edmonton with me for support. The neonatalogists explained what could happen with the baby, all the complications there could be, and what might happen when it was born.

I came home to Fort Nelson, but had to return to Edmonton once a month for check-ups and ultrasounds. For my last month of pregnancy, the doctors wanted me in Edmonton to deliver, so I had to finish school via fax for the last two months of school. On June 4, 2002, I went to the hospital to be induced because the doctor said the baby was losing weight. At 3:23 a.m. on June 5, 2002, I delivered a baby boy by a C-section. He was 201/2 inches long and weighed 7 lbs. 10 oz.

He was on the ventilator for the first three weeks of his life, the oscillator for the first five days. The hole was on the left side of his diaphragm, so his heart was being squished along with his lungs. His stomach and intestines were in his chest cavity. They transferred him to the University of Alberta Hospital when he was a week old. He had his surgery when he was about two weeks old, but they could not close the incision right away because he had retained so much fluid that he swelled up like a balloon. Nine days later they closed the incision. He was in the NICU for the first month and a half of his life before he was transferred to a pediatric ward.

He will be three months old on August 5th, and he is still in the hospital, but doing well. He is now 9 lbs. 14oz., and still getting bigger. The flap over the bottom of his esophagus did not form, so he cannot eat without throwing up. They inserted two tubes into his abdomen. One tube goes into his stomach to drain, preventing him from throwing up bile, the other bypasses the stomach and goes into the first part of his small intestine to feed him-- it's called a J-tube. When he gets bigger, they will do another surgery where they pull part of his stomach across the bottom of his esophagus and make a flap so he can eat orally.

Tyrell is the joy of my life, and even though he has problems, he is still my son. Troy and I are still together, and we're planning to move in together when I graduate. Ty is the most important thing to me, I would not give him up for the world. I was terrified when the doctors explained the ECMO machine, and all the problems he could have when he was born. I just kept my head up and told myself, "This is my baby; he will be strong when he's born, and I know he's going to make it."

Tyrell's mom, Jamie-Lane Campbell (Canada)

Monday, June 29, 2015

June 29 - Dear Nicholas Sparks (Guest Bloggers Charlene and Jody Gartman)

Dear Mr. Sparks,

It's been almost a year now since my baby Steven Tyler Gartman has passed away, so I have decided to tell his story. Not that the pain is any less, just that I want everyone to know what a sweet baby he was and how much he was wanted. In July of 1998, I found out I was pregnant. It was a BIG shock at first, but the more I thought about having another baby to cuddle and play with, the happier I became. Even though I was only about 7 weeks pregnant, we bought the baby his/her first toy. A soft, cuddly white puffalump. I couldn't wait to have my first ultrasound to see what we would be having. But my first one would not be until late October. It seemed like an eternity, but it finally arrived. My husband, my youngest son and myself would see our new addition today.

We found on the ultrasound that I wasn't as far along as first thought, so they couldn't really tell the sex for sure, but they thought it was a boy! I was so excited I barely heard her mention something about his heart, but she said not to worry because I wasn't far along enough to see anything clearly, to come back about around 24 weeks gestation and they would have another look. I wasn't worried, everything seemed routine to me. (BOY WAS I EVER WRONG). Everything was pretty quiet after that until my next scheduled ultrasound appointment, which was January 5th. This time it was only my husband and I. They confirmed on this one that it was a boy. And also briefly mentioned something about his stomach being high. I questioned her but she was all smiles, I guess she knew what was wrong, but didn't want to tell me. So she just kept smiling and said she would have me come back on the eighth so a specialist could have a look. So my husband and I were sitting in the waiting area while our next appointment was being made, and I noticed a group of doctors gathered around talking, and I was sure they were discussing my baby! I voiced my concerns to Jody (my husband), but he told me I was being paranoid. I had a regular maternity visit on the seventh, so I asked the receptionist for my ultrasound results to give to my OB/GYN, which they have always in the past let me take them myself. But on this day I thought it was very strange for her to say she would fax them herself.

We left there very confused but didn't know what we were confused about! So we decided not to worry until we were sure we had anything to worry about. So two days later, I go to my regular OB visit. I had wanted someone to go with me, but my husband had to work and my mother was already taking her neighbor to the doctor. I was so uneasy and nervous, I didn't want to get any bad news alone. For the first time EVER I was taken in promptly. I swear people were acting so strange! When the receptionist walked away to make copies, I glanced at my chart and my heart began to beat out of control! All I seen was a little postie note saying, "Patient is unaware of findings." I knew it was going to be awful!! And it was. The OB sugarcoated everything for me, but the specialist confirmed everything for us the next day. I could not believe the words that were coming out of that woman's mouth!! How could my baby have a life threatening condition? And what was a Diaphragmatic Hernia anyway?? Jody and I were so numb! And all the stats she gave us for his chances of survival were very grim. And I am so grateful she knew of CHERUBS, It was our only sanity in an insane situation. Next came the task of telling our families. This is only my feelings, but I wish our families could have been more supportive. I guess they didn't believe how serious our baby's condition was. We even had one family member suggest getting an abortion!! And I was 7 months pregnant!! Those words hurt me so bad. But as I have come to learn, a lot of people say a lot of things out of ignorance. We had an appointment to go to Birmingham, Alabama to consult with Dr. Georgeson, because that was the only place equipped to handle a CDH baby fully in our area. But because of conflicts in their ideas of treatment and our ideas of treatment, we decided to have our baby close to home, here in Mobile. I spoke with the Pediatric Surgeon, Dr. Beals, and he made me feel very comfortable leaving my baby in his hands. I had started steroid shots on the advice of Dr. Georgeson. All we had to do now was wait. My due date wasn't until March 28, 1999. In February I had my baby shower. It really felt weird, because I didn't know what the outcome would be. I remember when I got home and put the things away I got at my baby shower, I just sat in the middle of the baby's room on the floor and cried my eyes out! Wondering if he would ever use the things received. On Wednesday March 3, I was admitted in the hospital for Pre-eclampsia. Within the hour I was surrounded by very close friends and my sweet husband Jody. About four o clock that evening I was given a pill in my cervix to loosen it. I had a few contractions here and there, but nothing to write home about. In fact I was pretty comfortable. I don't remember the exact time Jody's parents arrived from Georgia, but I do know they stayed in that room with me just about the whole time. That was something new for this hospital, (to let family be with you through thick and thin). I'm not really sure how I feel about that yet. But I was so glad my husband was there, he was a really big help. Even as far as retrieving my bedpan when needed. (now that's got to be love!) The pills they were using was not working. I was not dilating as I should have been. I was starting to have some good contractions but that's all. My cervix was not opening. About three o’clock Thursday afternoon (March 4) the doctor wanted to insert a balloon in my cervix to try and open it, I had never heard of such, but by then I was in some kind of pain!!! And all I wanted to do was get this over with! Well wouldn't you know it, it didn't work! By that time I was screaming for an Epidural.

Somewhere in between the pain my mother came in. I was so glad to see her! I had a contraction that started and never stopped until I got my Epidural. (NOT A MINUTE TOO SOON!!) Finally at 8:05pm March 4 Steven was born. And all the pain and trouble I went through delivering him was nothing compared to the fight he was to have for his life. He was being bagged on the other side of the room while I was being stitched up. It was so sad not to ever hear him cry, but at least I got to see something no one else seen. That was his beautiful eyes! There were black as coals, but also so bright and beautiful1. I think he would have ended up with brown eyes later on. We knew what to expect when he was delivered because we were very well informed beforehand. We all hoped for a quiet time until his surgery date the following Wednesday. After Steven was born he was taken to I.C.U. right down the hall from my room. And family was allowed to see him if accompanied by Jody, but they were told no loud talking and no camera flashes, well this didn't seem to set well with some family members, but they should have been putting Stevens needs ahead of their own.

All day Monday we waited on any word of Steven's condition, but were told nothing because they were too busy working trying to save his life. We would walk back to the I.C.U. but couldn't see him for all the Doctors surrounding him. Then about 10:00p.m. one of his Doctors came to my room to tell me they could do no more for Steven. All their efforts were in vain. He did not even expect him to make it through the night. They would keep him hooked up to everything and continue his medications and painkillers, so we would have our chance to hold him and spend time with him before he passed away. So from 10:00pm til about 7:00am the following morning Jody, my mother and myself got to hold Steven, talk to him, sing to him, take pictures of him and just enjoy his very limited time with us. It was strange though, I had called friends and family to tell them about the baby's declining health, but no one was able to come that night we had a terrible storm. Driving visibility would probably have been zero. Even the hospital parking lot flooded. So only the three of us got to spend those precious hours with him. It was quite in there except for the beeping of the machines keeping him alive. I am so glad the three of us got to be the ones to develop a bond with him (even though short). One of my most dear memories is of my mother holding him and singing to him, every time she came near him his vitals would go up, I know in my heart he knew when his Maw-Maw was holding him. I don't want to leave out the doctors and nurses who took care of him. They were wonderful. When no one was in the room with Steven, his caretakers would hold his hand and sing to him. It really touched me and I will always be grateful to them. Especially Amy Schaepen. She was his primary caretaker, and she could not have been more caring to our son. She and several doctors and nurses shed a few tears when he passed away. So I know he had the best possible care. About 9:00a.m. Tuesday morning the rest of family and friends arrived to say goodbye to Steven. They were allowed to hold him, but I know it couldn't have compared to the time we shared with him the night before. Our precious baby had started turning black from lack of oxygen and he also started swelling. So my husband decided to remove his life support to spare him any further suffering. But on his way to the I.C.U. with the doctors, our precious baby passed away on his own, sparing my husband the pain of unplugging him.

I thank Jehovah for giving me the strength to cope with this. And there are so many people here on earth I want to thank, but I would never have enough paper. So I will name just a few. Thank you Mom and Dad, CHERUBS, Amanda and Mark, all my brothers and sisters from the Kingdom Hall, all the people who took care of Steven, and the understanding people at Valhalla. We love you Steven!! (P.S.) He was laid to rest with the soft, cuddly white puffalump we bought him.

Anyway, I mostly stayed in my room, because my blood pressure was dangerously high. I have been criticized by some for not spending more time in the I.C.U. with Steven. The truth is, I regret now not doing just that, but at the time it hurt me so bad seeing him laying there with tubes running all through his body, he looked so helpless. And my arms ached to hold him but I wasn't allowed to even touch my precious baby. I thought he would stabilize enough for surgery, but early Monday morning one of his doctors phoned my hospital room to tell me Steven had a very rough night. I knew then my baby wouldn't live much longer. For one thing, the I.C.U. staff never called my room with good or bad news, so I knew it must be serious. I called my husband and my mother because I couldn't bear to be alone.
Steven's parents, Charlene and Jody Gartman (Alabama)

Sunday, June 28, 2015

June 28 - Dear Nicholas Sparks (Guest Blogger Heidi Cadwell)

Dear Mr. Sparks,

I was so excited. Frank and I were having our first child...sort of. We were 'home' for 36 foster kids. Brian, Darrell and Sarah were with us at this time. Tanina was born on March 6th, 1995 during a typical ice storm. Frank helped the newspaper guy back onto the dirt road that had become quite slick with ice. We dropped off the kids at a neighbor's house and everyone cheered us on to the hospital. I was made very comfortable at the hospital. Being farmers, I knew Frank and I could handle this birth. He went out for a run and my mom entered in her motherly frantic state. Soon enough, the time came and Tanina was born. The midwife asked if Frank wanted to cut the cord and he declined.

There was no cry. They took my babe and put her on a table. There was no cry. One nurse put a black balloon on her face. There was no cry. "We'll be right back." the nurse said. "We just need to check some things." I told Frank to follow. A nurse proceeded to stitch me up because I tore.

Minutes later, Frank came in. His eyes were big. "There's something very wrong, Heidi."

"You need to be with Tanina." I started to try getting up but my legs wouldn't move. The epidural hadn't worn off. A doctor came in with a yellow legal pad. He sat across the room and drew a picture that made no sense to me. "She has a 5% chance of life with multiple issues. We suggest that you let us send her to (unnamed hospital). You should stay here and make arrangements. No. This wasn't right. I started to pull all of the tubes from my arm and threw myself out of the bed. I was on the floor crawling towards the door. My baby needed me. The nursing staff were quick to put me in a wheel chair telling me they would get me to my child. A doctor came by and gave me a Polaroid picture of my girl. Frank came back with the same owl eyes. "We are sending her to Boston. Don't let them send her anywhere else but Boston."

They didn't want to send her to Boston. Frank insisted so Boston was called. Some time later, the Boston Ambulance arrived. The intern who came to get Tanina was the first person to smile at me that day. "She's beautiful," he said. "I will take good care of her. The doctors we have will help her." They are the best." Tanina was in an incubator with tubes and wires. She was rolled away. I cried for the first time all day. I had not been able to touch my girl.

Frank went home to feed and water our sheep as well as talk to our neighbors and kids. I was suppose to stay at the hospital for the night. If I could pee, I could leave. A nurse called when Tanina arrived in Boston. She was stable. I could call any time and check on my babe. Nurses kept coming in to pet my head and tell me everything was going to be all right. They tried to give me pills and an IV but I would not have anything to do with them. I don't think I was too nice. As soon as I could get my legs moving, I was gone. That happened at around 6 am. I forced myself to my feet and started heading for the door. The nurses tried to stop me but I just kept going. They wanted me to sign papers and sit in a wheel chair. I just kept going. Mom got the car. I told her to head for Boston.

Thinking back on this, I can't imagine anything so stupid. Boston is not a place that you just drive to. It's antiquated road system baffles the best drivers. My mother went over the same bridge six times before I told her to drop me off. I would walk. Like all the other miracles in this story, a Boston Children's Ambulance showed up. We followed this and were soon, right outside the hospital. I was almost there! My baby! A police officer showed up at my mother's car window. "I am sorry. You will have to move." Without another thought, I got out of the car. I heard the officer tell me to get back into the car. I just kept going. He grabbed my shoulder and turned me. My arm was already up and I hit him square in the face. Down he went. I started to run and the last thing I saw was my mother trying to help the officer up. The front door, the desk, elevator, another desk. And then there she was. My baby. My sweet child. They were just taking her into surgery but stopped so I could spend a moment with her. I couldn't hold her hand or touch her face. I held her foot, which was the only part not filled with tubes and wires. And then they took her away.

The rest of the story for Tanina is filled with Jay Wilson, her surgeon and Rusty Jennings, another amazing human whose hands are guided by God. These two men gave my daughter, Tanina, life. I have learned a lot about hospitals and doctors since Tanina was born. It was Jay Wilson who told me that the scars I carried would always be deeper that Tanina's. He was so right.

Today, Tanina is 11 years old. She plays flute in the town band as it's youngest member, rides horses, does karate, sings solos in church and is a A student in school. This past summer, she made the all-star team in softball, playing a great first base with a wicked fast bat. She even bought her first 'two piece' bathing suit. She's not afraid to show the world her 'Jay Wilson signature'. I am proud of who she has become, marveling at her maturity and grace.

Heidi Cadwell (New Hampshire)

Saturday, June 27, 2015

June 27 - Dear Nicholas Sparks (Guest Blogger Gabriela Frietag)

Dear Mr. Sparks,

On June 22nd 1998 I found out that our baby had CDH. We were only 6 weeks away from the due date and this news was just devastating for us. On that first night I was so anxious to get any information about CDH, since I only received limited Info from my hospital that day. Fortunately I found CHERUBS on the net that first night and I am ever so grateful. I admit, I did cry every time I read a story. But at the same time it gave me information; Not only about CDH itself, but also how other families dealt with it and what I had to expect. This was my second child. I have a perfect life; my husband and I grew up in Switzerland and have been living in this country for the last 15 years. We just celebrated our 10th wedding anniversary, we have a beautiful 5 year old, own a home and have a successful business. This pregnancy was going fine, morning sickness and being tired all the time was the only complaints I had. I turned 35 in spring. There has been no birth defects in my family. I was never concerned about anything and therefore decided against having an amniocentesis test. I was "heavier" than with my first born, and that is what ultimately caused the Ultrasound check-up, were they discovered my baby's birth defect.

We were very fortunate that our hospital referred us to UCSF and that we only live one hour away. Doctor Hawgood was the first Doctor we met and he was the one that explained CDH in details to us. Now we knew what to expect. We knew that our baby boy had a left-sided CDH. We knew that the liver was up and that his little heart, even if squeezed to the other side, was healthy. And we knew that it did not look very promising. I remember crying while listening to Doctor Hawgood's words. Life had changed for us and was not going to be the same ever again.

Until birth I received premium care at Kaiser, my regular hospital. I did an amniocentesis test after all, and the result showed us that our baby was o.k. otherwise. Twice a week I went in for a stress test and once a week for an ultrasound check-up. It was a long five weeks. As planned at 39 weeks birth was induced at UCSF and on August 4th Thomas Alexander was born. We were only able to get a quick look at our newborn baby, before they rushed him away. Since the time I had found out how very sick our son was, I was very scarred of this moment. It was hard to imagine not being able to hold my baby, and it was even harder to go through it. I cried, my heart was aching. After Thomas' intubation they brought him back into the delivery room hand ventilating him, for us to see him once again. I remember thinking that the reason for bringing him back was because they didn't think he was going to make it. It was a sad moment, but at the same time I appreciated it so very much. I was too scarred to touch him. Later that morning they "wheeled" me into the ICN and I saw my baby laying there, Pavelon-paralyzed, hooked up to tubes and wires. Thomas was connected to an oscillator, I didn't see my baby, it was only the wires and my pain I saw. Later that day, our social worker Stephanie along with Doctor Poulaine visited me in my recovery room. Thomas was not doing well, we were talking about ECMO. I was devastated. My husband and I had decided not to use ECMO on Thomas. Then Thomas' very critical condition "improved" to critical. I had to face another heartbreaking thing; going home without my baby. I felt just miserable. I did not see my baby for one day. That was the only day I missed visiting Thomas..I started to drive to the hospital every day. How fortunate I was to only live one hour away. Since all our families were overseas, it made this situation just a little trickier. My sister Karin came over for 6 weeks and helped us out and I'll always be grateful to her.

That following Saturday morning I received a call from UCSF. They were going to start to operate on Thomas within an hour to fix the hernia. They wanted our consent. We then immediately drove to the hospital hoping to make it there before they started. We also had a chaplain waiting to baptize Thomas. We got there in time. Finally we would find out, what and how much exactly was hiding in Thomas' chest. Doctor Farmer found some diaphragm muscle so she was able to attach the large gortex patch to it. She also discovered and removed a rather large piece of extra lung tissue. The operation went well. Doctor Farmer left her signature; a pretty choochoo train cutout bandage to cover the incision.

Now the waiting started; Recovery, and to see how much lung he actually had. Thomas recovered rather well. But he had very little lung. On August 10th I saw his eyes open for the first time. I was the happiest person on earth. Finally on August 14th we took Michael to see his baby brother. Michael reacted well. The nurse that day, Laurie, was so nice, she covered some of the tubes and she let Michael take Thomas' temperature. She made that first visit special. From then on we took Michael once a week to visit Thomas.

The following Saturday night we woke up to a phone call from the hospital. Thomas had developed pulmonary hypertension, they asked for our consent to start him on the Nitric oxide treatment. We agreed to it and Thomas reacted very well to it. Again it seemed to be going into the right direction. Thomas was able to take breastmilk through a tube for a couple of days, then he received a special formula for a few days, then the feedings stopped all together. We started to wean him off some medication, but eventually started the same again or put him on something else. We started to run out of room for his IV's. Twice we tried to put him on a regular ventilator, but had to put him back on the oscillator. Some settings on the oscillator went down one day and then right back up again a few days later. High hopes one day, disappointments the next. We were in the middle of that roller coaster ride they had talked to us about.

Going to the hospital every day was part of my life now. Every day I would massage Thomas with lotion, give him a pep talk and all the love I had. The ICN became my second home; all of a sudden nurses, doctor and other hospital workers were part of my family. On September first Thomas smiled at me for the first time. I was so happy and I felt so good. I had an extreme amount of stress, but I felt good. By this time Thomas had us all surprised. I think nobody expected Thomas to do so "well", or even live this long.

In the beginning when I had found out how sick Thomas was, I rejected the thought about having a "disabled" child. Now, it didn't matter any more. I loved my baby too much for it to make any difference. Since his hernia repair Thomas was struggling with his Chylothorax. On Labor Day weekend Doctor Harrison performed a thoracic duct ligation. We were able to remove the chest tube a week later and we believe the ligation was successful. But Thomas never really recovered from the surgery. He got infections and the treatments just didn't do well. The condition worsened. After loving Thomas for 39 days, we had to let go of him.

On September 11th our sweet Thomas passed away. We held him in our arms to say our good byes. Finally he was free of all the pain, free of all those tubes and wires. Our pain is deep and it seems like it will never go away. After this experience my husband and I are closer than ever. I have a few pictures and other momentos of my sweet baby. I will always be grateful to all the skilled Doctors, the compassionate nurses, our supporting friends. But most of all, I will always cherish the moments I had with Thomas, my sweet little angel.

Thomas' mom, Gabriela Frietag (California)

Friday, June 26, 2015

June 26 - Dear Nicholas Sparks (Guest Blogger Jean Button)

Dear Mr. Sparks,

Kevin and I had been married for 10 years and had two little girls when I got pregnant in the fall of 1992. We had waited until we were financially stable to have this third child and the pregnancy was well planned. I was about to finish up my Bachelor's degree in Elementary Education that coming spring, something that had taken me 9 years to do in the evenings. We were very young when our first daughter was born, Catie, in 1983. I was 17 and Kevin was just 18. When Diana was born 3 1/2 years later we thought maybe we were done. As the years went on and we struggled to make it, we realized that we wanted one more child to enjoy when we were more mature parents. Two months after we discovered I was pregnant I had a nasty miscarriage in front of the class I was doing my practicum in. It was an awful experience. Our obstetrician told us to wait at least 3 months before becoming pregnant again. We didn't heed his advice and I have always wondered if this was a factor in the nightmare that was to come. I realized I was pregnant again right after Christmas. A test confirmed it but we waited awhile to inform everyone after having done this two months before. When I was 4 months along, I was sent for a routine ultrasound at the local hospital. The technician was the sister of Kevin's boss. After I had been on the table awhile, her face changed and at that point we immediately knew something was wrong. She said that she needed to go get another technician. This is every parent's worst nightmare. After two doctors came and looked at my growing baby, they all retreated to the back room. After 15 minutes or so they came out with grave looks on their faces. They informed us that our baby girl had some sort of mass in her chest. It could be one of three things, one thing called Congenital Diaphragmatic Hernia was the worst of the three possibilities, but was unlikely. They scheduled a Level 2 ultrasound at Beth Israel Hospital, Boston and we left there stunned. We had no information whatsoever and had been reassured that it was probably not CDH.

This news made student teaching difficult. I couldn't concentrate knowing that there was something wrong with my baby. At Beth Israel, the doctors informed us that our baby girl did indeed have CDH and the chances for her survival were slim. They outlined some possibilities, one of which was a late abortion that could be done out of state. At this point I was 23 weeks along. We went home and I prayed harder than I had ever before. I knew that God would never want me to give up on this long hoped for and planned for baby. We picked out a name for her, Michelle Rianna, and began a journey that forever changed our lives.

We began to go weekly for level 2 ultrasounds and non-stress tests. I endured 2 amniocentesis and a PUBS test for chromosomal abnormalities. Michelle had borderline hydrocephalus, but her chromosomal tests came back normal. We met with a surgeon who had trained with Dr. Michael Harrison in California, of fetal surgery fame, and he gave Michelle only a 15% chance of survival. He explained that ECMO would be a last ditch effort and they didn't have that at New England Medical Center (where I was under care for my pregnancy and where Michelle would be born) and if she needed this she would have to be transferred to Children's Hospital. Dr. Crumblehomme recommended us for fetal surgery and I went through an agonizing few days trying to weigh the pros and cons of this, as there is great danger to the mother and the baby does not always survive anyway. The tape of my ultrasound was sent to Dr. Harrison in California. Just when we had made the decision that I would not put my life in danger, that my family needed me here in Massachusetts, Dr. Harrison's assistant, Dr. Adzig, called me and told me I could not be considered because part of Michelle's liver had herniated up and the surgery would be too dangerous. I was relieved to not have to go even as I had already made this decision.

The weeks to Michelle's birth were agonizingly long. We met with counselors and psychiatrists to help us deal with what they termed as the impending death of our unborn child the minute she was born. The biggest and most helpful support we received came from members of our church family and our family and friends. People we didn't even know prayed for us as word spread about our situation. I graduated with a 3.83 GPA in June of 1993, but it was all a blur. I don't know how I did it. I had a great Co-operating teacher who was very understanding.

Our two older daughters began to see the strain as the news sank in and the traveling back and forth to Boston every week began to take its toll. We cried all the time, but through it all we maintained hope and it brought Kevin and I closer together.

I was called into the hospital to begin an induction on the 18th of August as Michelle was my fourth pregnancy and a baby like her could not be delivered on the highway. We were all set to go and they called and said there was no room at the hospital and to come the next day. What an emotional blow!

By the time I got to the hospital the next day, I was in real labor. After 7 hours of laboring with about 20 people in the room I gave birth to Michelle at 6 lbs., 15 ounces. She made one feeble cry before they intubated her. I didn't even get to hold her, I had one fleeting glimpse, then they crowded around her and I could see her no more. By the next day she was no better and they decided she would need ECMO and transferred her to Children's Hospital. There we met Dr. Jay Wilson, to us he is the most important man besides God in Michelle's life story. A compassionate, skilled and realistic man, he explained to us her chances in real language and reassured us that he had operated on more CDH babies than any other doctor in the world and that she was in good hands. The nurses at the hospital made a sign welcoming her into the world and adopted her like their own. When she came off ECMO , one bought her a new outfit and took pictures.

Michelle was intubated until October. We finally got to hold her for the first time in September. She had a long and complicated hospital stay. In December they placed a g-tube. She began to have fluid overload problems. She would get pumped up with Lasix and dry out, do very well, then regain the fluid. She never learned to eat well, because by the time she went home at 10 months, the formula she was on was 50 calories an ounce! She was all set to go home at 8 months when she got RSV and ended up back in the ICU once more on the verge of death. She was back on the respirator and began to lose weight that she couldn't afford to lose.

On June 8, 1994, almost 10 months after her birth, Michelle finally came home! We had round the clock nursing, oxygen, multiple medications, a heart monitor, an O2 SAT monitor, IV poles for feeding and tons of supplies. She went back a few times those first few months for IV Lasix, but slowly at home she began to gain weight. It all seems so long ago now, but it was a very long haul. At age two she had a Nissen Fundoplication. She had vomited everything up til that point and we had no other choice. She began to eat after this, her fear of vomiting began to diminish. By age 4 she was no longer receiving anything through her tube and we had it taken out in October of 1997. My parents took her to Disney World as a reward this past May for persevering, gaining weight and getting her tube out. She had one more surgery just before they left to close up the stoma site, as it had not totally closed.

I need to tell you all about the two other families with CDH children that we met at the ICU at Children's Hospital. Our children were born within a week of each other in August of 1993 and it is a complete miracle that they all survived. We feel as if fate brought us together so that we could support each other. Noelle was born one week before Michelle and Danny was born one week after Michelle. We have the closest relationship with Noelle and Danny's parents. Each child has had a very different medical course but we can talk to each other like we can talk to each other on the listserv, without having to do a major introduction before we can have a conversation about our child. Noelle, Michelle and Danny spent a long time together in the hospital, first in the ICU, then on the floor. We saw each other frequently in the monthly CDH clinics at the hospital. We always get together for their birthdays and Christmas and try to see each other as much as possible in between. God knew what he was doing when he arranged it so that we could meet each other, because I don't know what I would have done without Wendy (Noelle's Mom) and Maureen's (Danny's Mom) support in the 5 years since our Cherubs have been born. We frequently give each other angel motif items, even before we discovered the Cherubs website. We call them the 3 Musketeers, 3 Peas in a Pod, or the 3 Angels. Whatever we call them, they are truly God's Miracles, just as every other CDH child who has been born into humanity.

Michelle's mom, Jean Button (Massachusetts)

Thursday, June 25, 2015

June 25 - Dear Nicholas Sparks (Guest Bloggers Jenni, Robert, and Brenton Forman)

Dear Mr. Sparks,

My name is Jenni Forman and my husband Robert, and I recently had a baby with CDH. I had a very normal pregnancy up until 32 weeks. I went to see my OB/GYN for a routine visit. Dr. Settle was worried because I weighed and measured the same as I had at 27 weeks. He decided to see me a week later to see if I had gained any more weight or measured any bigger. A week came and still I was the same as I was at 27 weeks. I had an ultrasound at 27 weeks that was normal except for her cleft lip. Dr. Settle decided to send me to the hospital for another ultrasound to check fetal growth. The x-ray technician took a bunch of pictures and told me they would have the results on Friday. I felt like something wasn’t right. I called Dr. Settle on Friday and he never called me back until Monday morning. He told me that the baby had a hole in her diaphragm. He said that he wanted to send me to University hospital in Oklahoma City (about 300 miles away) to a high risk OB/GYN. On Tuesday January 11th I saw Dr. Coleman in OKC. He did another ultrasound and confirmed the CDH and cleft lip. He said the baby could possibly have Trisomy 13. He did not want to do an amniocentesis because of the risk of premature labor or infection this late in the pregnancy. He gave us an 80% chance she would die and a 20% chance she would live. He sent me back home and said to come back for a check up on February 17th. He never offered to let us talk to the baby’s doctor or tour the NICU at Children’s Hospital. He never explained ECMO or anything about the treatment of CDH. We went home in shock. We stayed that way for about 3 weeks until we saw the program about the baby with CDH on 20/20. After seeing that, we started doing research on the internet and that is how we found CHERUBS. When we returned to Dr. Coleman on February 17th, we had a lot of questions. He answered most of them, but was still very negative about the outcome. He told us we would do a c-section February 24th. We went back home. We were very angry about the negativity so we called his partner Dr. Stanley. He called us back and answered all our questions. He had one of the neonatologists call us to explain what we could expect from them. Dr. Mantor told us that they would not allow the baby to cry or anything. He said she would be intubated immediately and taken across the street to Children’s Hospital of Oklahoma. Dr. Mantor then contacted Dr. Coleman and Dr. Stanley and they decided to do my c-section on February 22nd. We arrived in OKC at University Hospital at 9:00am on the 22nd. At 12:10pm, February 22nd 2000, Candis Nakole Forman was born 11 days early weighing 4lbs 7oz and was 18 ¼ long. She was intubated and taken to x-ray. After her x-rays were done they brought her by so I could see her before she went to Children’s Hospital. About 3 hours after she was born the neonatologist came and told us that she had a heart problem that could not be fixed and that she would be lucky if she made it through the night. My husband and parents went to see her several times during the day. Around 9:00 that night I was finally able to go see her. When we got over to Children’s Hospital she was dropping very fast. When I talked to her, her vital signs went up for about 25 minutes. We had her baptized and she passed away in her daddy’s arms at 9:30pm. We got to hold her and tell her how much we loved her. We told her that it was ok to go home. We found out a couple of days later that she did have Trisomy-13. We will always love her and miss her, but she is in a much better place now. She will never feel pain or sickness the way we do. We know that we will all be together again.

Candis's family, Jenni, Robert, and Brenton Forman (Oklahoma)

Wednesday, June 24, 2015

June 24 - Dear Nicholas Sparks (Guest Blogger Judy Bunch)

Dear Mr. Sparks,

I was having a pretty "normal" pregnancy with no problems initially. My AFP test had come back with an elevated risk of Downs so it was recommended that I have an amnio. I was 32 so I wasn't going to automatically have one but I opted to do it due to the result of the AFP. (When I was pregnant with my daughter three years prior, I had the same thing happen so I just thought, "here we go again.") My amnio was normal and the detailed ultrasound they did prior to it and during it revealed no abnormalities. I was very relieved and happy I was carrying a healthy baby, so my pregnancy proceeded with me feeling very well. I knew I was carrying a boy and my husband and I felt very lucky and were trying to prepare our two-year-old daughter for the arrival of her little brother.

About a week before Christmas, I was 31 weeks by then, I went in for my normal checkup and the doctor measured the height of my uterus. He said I was measuring 35 weeks along and that he wanted to do an ultrasound. I told him that my first baby was big and that I wanted one done at 38 weeks so I could decide if I wanted another cesarean. He said I could have one then, but he wanted one now. (Thank God for him. This was the first step to saving my baby's life)

My husband and I went in a few days later. The ultrasound revealed what was initially believed to be a problem with the heart. Our baby's heart was shoved way to the left of his chest. We were devastated and when we saw my OB, she gave me a big hug and said that she didn't know what was wrong with the baby, but she was going to send us to specialists and that she was going to do everything to help our baby.

It took a couple of visits with level 2 ultrasounds to narrow the problem down. The doctor couldn't get a good picture of the baby and it was either a type of mass in the chest, or a diaphragmatic hernia. (Initially they thought there might be something wrong with the structure of the heart, but it was because the heart was being smashed up against the wall of the chest.) The doctor recommended to deliver at a hospital that has ECMO and explained to us why. He gave us a couple of options, the closest of which was Gainesville, FL (we live in Jacksonville) He had also mentioned the in-utero surgery they do in San Francisco but we did not like the success rate percentage.

We met with the OB specialist who did another ultrasound. He definitely could diagnose it as a diaphragmatic hernia. He said that it was right sided and the intestines were probably up there and most of the liver. We then met with Dr. David Kays who is one of the pediatric surgeons at Shands hospital and who also specializes and has done many repairs of CDH. He went through all of the scenarios that could take place. We all decided on a cesarean set for 39 weeks. I would be given two steroid shots starting two days prior to my cesarean.

All this time was devastating. I was trying to be cheerful over the holidays for my daughter's sake, plus I didn't think that crying 24 hours a day would be good for the baby, however, I couldn't control my emotions at night. I would pray and cry for hours every night until my pillow was soaked. The one thing the doctors were able to get across to me was the seriousness of this defect.

At my weekly visits and non-stress tests I would have at my OB's, I asked her what I should do if I go into labor and she had said to call and come right away and she would send me by helicopter if necessary to Gainesville. I laughed at the idea of me going by helicopter and even told my cousin to "pray my water doesn't break and I don't have to ride in some damn helicopter!" At 37 weeks, that's exactly what happened.

I was at my mom and dad's with my daughter and I started leaking amniotic fluid. I called my doctor and went to the office, which was located at Baptist hospital in Jacksonville. She verified I was in labor and called Dr. Kays' office in Gainesville. They asked her to give me a shot of Beta Meth and send me on my way. I was already dilated two centimeters, so she decided to get me there as quickly as possible.

My husband, mother, and daughter, were there and said they would meet me in Gainesville since nobody was able to ride with me. As soon as I was at Shands hospital, they set me up on a magnesium sulfate drip to slow the labor. Dr. Kays came in to talk to me and said they were going to hold me off for quite a while because I needed some time to pass and then another steroid shot. They had to put me on the maximum of the drip to finally get my labor to slow down.

The next day they were able to reduce it a little so I could be a little more comfortable. The doctors would check me minimally so as to not cause anymore dilating. I had been admitted on a Tuesday and on Thursday morning, I was in a lot of pain and felt like I had dilated more. They checked me and I was five centimeters and they said it could not be stopped now. Dr. Kays came in and said that they would do the cesarean at 11:30am and he would be in the delivery room ready to help my baby.
I had sent my family home since I didn't think I would be delivering this early and the only reason my husband agreed is so he could work more so that he could stay for a long time after the baby was born. I called him to come back to Shands but there was not much time before I was taken to the operating room.

When they lifted my baby out, I heard someone say, "Judy, look quickly!" I saw my son for a split second before they handed him to Dr. Kays' team. I'll never forget that big "waaaa" face with no sound coming out, except for a quick little noise that I can't explain, sort of like what it sounds like when someone gets the breath knocked out of them.

I looked over to the little bed where Ian was but I could not see because there were too many people around it working on Ian. The two anesthesiologists were talking to me to keep my mind off things and they would look over and then try to reassure me. I kept hearing someone call out each minute that passed, and knew things weren't going well. All this time I was praying as fast as I could and straining to see my son. At one point, one of the anesthesiologists went to look at Ian and then I saw him look at the other one and he was as white as a ghost. When four minutes had passed I still hadn't heard anything and then finally Dr. Kays came up to me and said that Ian was very serious but they finally got him stable enough and were taking him to NICU. After they took him out of the room, someone came to tell me that my husband just arrived and got to see Ian for a second, and that he would be waiting in the recovery room for me.
I was taken back to my room to recover from the surgery. After an hour or so, someone brought me a polaroid of my son. He was on a ventilator and almost his entire body was covered with wires and tubes. At two hours old, we were told we could go to see him. I sent my husband and my mother to go look at him and come back and tell me how he was. When they came back, I begged my recovery nurse to let me go to see. She helped me to the wheelchair and I was taken to see him. When I went in, Dr. Kays explained to me how serious Ian was. He said he went a long time without oxygen in the beginning because he was very hard to intubate. When I looked at Ian, the vent was working his body so hard that his chest was dramatically rising and falling. The nurse was there to answer any questions about all the wires or machines that we needed to ask. I couldn't stop crying every time I looked at him. He was so beautiful. He looked so much like our daughter when she was born. He was a good size (7lbs. 14oz) which the Dr. said was in our favor, and also that it seemed he had a strong heart. I would visit again and again. I couldn't stay away from him. It was like I was trying to engrave his face in my mind because I thought I would lose him. At about 3 o'clock in the morning, I went to see him again, and there I saw the surgeon, Dr. Kays, still by Ian's side. That is when I realized that we were in the best place we could be.

The next day, only 24 hours after he was born, Dr. Kays came to tell us that Ian was not doing well and that he had a small window of time to get his surgery done. He really didn't want Ian to go on ECMO without having done his repair yet, so he was going to do the surgery even though Ian was so marginal. He did Ian's surgery right in NICU because he was too unstable to move. Ian made it through the surgery. Dr. Kays said that 85% of his liver and almost all of his intestines were in his chest. He said that Ian basically had no diaphragm and he showed us the gortex that he used as a patch. He said it was the biggest patch he's ever had to do. The X-rays revealed that Ian's right lung was extremely small, about 30% of what it should have been, and his left lung was about 70% of what it should be. Dr. Kays said Ian's lung and liver were bruised somewhat because the vent was causing them to hit each other.

The next day, Ian's blood gases were so poor, he had to be put on ECMO. That was the .worst day of my life. Even though the ECMO program was the initial reason we went to Shands, I was hoping all along that it would not be needed. I was told that Ian's lungs had been worked too hard and ECMO allowed them to turn down the vent and give Ian's lungs a rest and that hopefully, his lungs would grow and expand with the room in his chest recently created by the repair surgery.

I can't explain ECMO. It was the worst sight I've ever seen. I thought seeing him with all the tubes, vent, and other stuff was bad, however it was nothing compared to this. A huge machine was parked right next to Ian's bed, with big fat tubes filled with blood going from the machine surgically attached to his jugular vein. The only redeeming quality was that for the first time, my son looked more peaceful because the vent had been turned down and it was not pumping his lungs like it had been. I could understand the concept of what ECMO could do for Ian. It would oxygenate his blood so his lungs could be given a rest and hopefully start to grow and work. I asked Dr. Kays how long he thought Ian would have to be on ECMO. He said given how sick Ian was, probably somewhere between 10 and 14 days.

Life on ECMO was extremely hard. Ian would have one good day, two bad. Then have two good days and one bad. At one point we were very encouraged because a blood gas showed more oxygen than what they were giving Ian, which meant his lungs were beginning to work. He had to go through two circuit changes (that's when they change out the whole machine with another one filled with all new blood.) They would have to do that because the blood in the machine would start to clot after about five days, which would be extremely dangerous. After both circuit changes, Ian would have a very bad day and a half, probably because it was a shock to his system. At about day 10, Dr. Kays tried a second attempt of trial off ECMO. That's when they fix the machine so they can see how Ian would do without it. Again, Ian's blood gases were too poor and he had to put him back on. Eventually, on day 16, it was time for another circuit change, but Dr. Kays had been preparing the machine, turning the flow down for a few days, hoping that this time Ian was going to do it. He made it off and the next time I went in, the machine was gone. The next nine days, Ian was slowly weaned off the vent. When he was 22 days old, I walked into NICU and Sandy, Ian's nurse, had him dressed in a little shirt and had washed his hair for the first time. She and Michele, the nurse practitioner, asked if I wanted to hold him. I had never asked any of the nurses when I would be able to hold him because I was afraid I would not like the answer, but mainly because I knew I wouldn't be able to ask the question without breaking down and crying. I would cry when I would see the other parents in NICU get to hold their babies because I so much needed to hold him.

They put an oxy-hood on him at first, then switched him to a nasal cannula. This is the first time I saw my baby's beautiful mouth. His cry was raspy and weak, but it was music to my ears. At this point, he started making progress in leaps and bounds. It was a continual positive progression from here. They did an upper GI to see how bad his reflux was going to be. The test showed minimal reflux. We started slowly introducing feeds by mouth. I had been pumping breast milk and when they first placed the NG tube, that was the first real food (not IV) he received.

Increasing the feeds by mouth was a painstaking process. Eventually I was able to breastfeed. Since breastfeeding is not an exact science, every day I anticipated when he would be weighed hoping for a nice gain. At the same time the nurses were teaching me how to give Ian his meds by mouth since I would be doing that once I took him home. After Dr Kays was satisfied with Ian's weight gain and progress, after 50 days in NICU, we were able to take Ian home.

He came home on portable oxygen by nasal cannula. I had a huge tank set up in his room and he had a 20 foot tube so I could walk around the house a little with him. He was also on a heart monitor constantly for the first few months and then just at night. He had to take many meds by mouth every day. Nifedipine he took initially because he had pulmonary hypertension, which he was off in a couple of months. He also took Cisapride, Pepcid, which helped with reflux, and Lasix. He remained on oxygen until his first birthday. In his first year and a half he was hospitalized three times for respiratory infections, none of which were RSV. As he gets older, he seems to get sick less often, and tolerates the viruses better.

Today, he is two years old, is saying six word sentences, runs and plays with his older sister, and is in the 50% for height and weight of normal children his age. Nobody can believe he was as sick as he was. He looks so healthy and is extremely active like any two year old.

Ian would not be here if it weren't for his surgeon, Dr. David Kays, who is a pioneer in changing the way babies with Congenital Diaphragmatic Hernia are treated. He has the best published diaphragmatic hernia data with a survival rate of 92% of babies that are born at Shands. He and the wonderful nurses and therapists provided Ian's little body with everything that it needed to grow and work and heal. We are so lucky we found our way to Shands.

We are so lucky in many ways, and knowing how different it could have been, makes us count our blessings every single day for our miracle baby.

Ian's mom, Judy Bunch (Florida)

Tuesday, June 23, 2015

June 23 - Dear Nicholas Sparks (Guest Blogger Julie)

My husband David and I had been married for 2 ½ years when we decided to have a baby. I was 34 and had a 9-year-old son (Jimmy) from my first marriage, and David was 33 and had a 13-year-old son from his first marriage. The baby was due June 6th and I would have a c-section in late May/early June.

Because of my age, I was concerned and cautious with this pregnancy. But other than morning sickness, things seemed fine. We had an ultrasound on December 23, 2002. I was 16-17 weeks along. The ultrasound technician did not say much during the scan. She said everything would be sent for analysis and my doctor would get a report. I wonder now if that is their policy, or if she just didn't want to say anything to us.

At Christmas we showed off our ultrasound pictures, and I started to relax. Then on Dec. 27, the hospital called saying my doctor wanted me scheduled for genetic counseling and a Level 2 ultrasound as soon as possible. I was terrified and called my OB/GYN. They said to calm down and not to worry (too late!). The ultrasound showed the baby might have a hernia or a hole in the diaphragm, or the diaphragm was missing. My first feeling was relief that it was something "physical" and not"mental." I figured they could fix something physical. Next I checked the internet using the only terms I could think of: fetus hernia diaphragm. The only thing I found was Congenital Diaphragmatic Hernia (CDH). What I read was not comforting!

At the hospital on Monday, I was a wreck. The genetic counselor (Beth) said there were other suspicious things which the doctor had not mentioned. There was a concern the baby might have a cleft lip, cleft palate, a missing kidney, and a larger than normal head. And yes, they were looking for CDH. Beth told us babies with one abnormality usually have more. She talked about all kinds of potential problems. Beth was very open and honest with us.

The ultrasound confirmed the CDH. The good news was they didn't see any of the other defects. I would need to have Level 2 ultrasounds frequently, and in a few weeks they would do a fetal echocardiogram. Mostly we heard that they couldn't tell us much yet because it depended on how well the baby's lungs developed. The liver was in the abdomen, but it could move up or down throughout the pregnancy. I had an amnio done, and they also did a FISH test so we could have results in 48 hours. Both results came back fine. There were no problems with the baby's chromosomes. Beth warned it did not mean there was nothing else wrong. There could still be problems which don't show up on ultrasound or amnio. But it was still a relief.

We had an Echo on Feb. 5. They didn't see any major heart defects (no holes or anything). Because the heart was pushed over and turned, some things did not go in a normal route, but blood was flowing to and from the heart the way it should. There were some things they couldn't see well though, because the stomach was in the way.

I read everything I could about CDH. I read every Cherubs story. I was frustrated because there didn't seem to be much difference between the babies who lived vs. the ones who died. I did read that babies with heart problems in addition to CDH would most likely die. That scared me. Although they didn't see anything terribly wrong with our baby's heart, it wasn't completely normal.

We met with a surgeon who explained what we could expect with the CDH repair. She was very optimistic based on the reports she'd seen on our baby. She said she'd guess his chance of survival would be 80-90%. She even thought he might not need ECMO. She said babies on the bad end of the scale generally do poorly, and ones, such as ours, on the good end tend to do much better. We felt very positive after talking to her.

At about 6 ½ months the baby was lagging in weight (11th percentile), but he was growing consistently (the lag wasn’t getting any worse). I started having Biophysicals once a week to keep an eye on things. My chart was now marked as Diaphragmatic Hernia and IUGR.

Thomas Jefferson University Hospital in Philadelphia (an hour away) was the closest hospital with ECMO, so I transferred my care to the MFM group at Jeff. At our first appointment, we had an ultrasound and another Echo. We were told the hole in the diaphragm was very large and that the baby had severe dextrocardia, meaning the baby's heart was pushed way to the right (practically against the ribs). We talked to a Neonatologist, toured the NICU, and saw a baby on ECMO. The docs reviewed the ultrasound results, and said the stomach was still up, along with a significant amount of bowel, and the liver was still down. The baby was still smaller than they'd like, (15th percentile now), but measurements showed everything was proportionate, meaning he would just not be tall (David is 5' 6" and I am 5' 1" so that wasn't surprising). They were concerned about his limbs possibly being short, and his head looked lemon-shaped, but they could not give us any indications of what this meant! Also, I had polyhydramnios, which explained why the baby was so active. I started having NSTs twice a week.

One day, when I was 7 months, I started having contractions. They were 7-10 minutes apart, so David called the Doctor. We were told to go to our local hospital to be monitored because it was much closer than Jefferson. The monitor showed I was contracting every 3 minutes. I was only a fingertip dilated and not at all effaced. They ran tests and started an IV for fluids. Results of a fetal fibronectin test were negative meaning there was 99% probability that I would NOT go into labor in the next two weeks. But I kept contracting. I guess the hospital didn't want to be responsible for sending me home since my official doctors were at Jefferson, so at 3 a.m., I was transferred by ambulance to Jeff. At Jeff they did another cervical exam (still no change), and talked about options. I was exhausted. David noticed the contractions were slowing down, and when I dozed they completely stopped. Finally they did an ultrasound to check on the baby. He was fine, and his heartbeat had been perfect the entire night. At noon on Friday they finally let us go. A couple of weeks later, I had another bout of contractions during an NST and was sent to triage. After a couple of hours, I was sent home with a prescription for a urinary tract infection.

We had a special Oxygenation test on May 2nd. This was a way to determine how well the baby's lungs were developed. First they measured the baby's oxygen intake while I breathed room air. The graph showed a lot of resistance getting oxygen to the baby. Then I breathed oxygen through a mask for 10 minutes and they checked the level again. We could immediately see the difference in the graph. We were told it was the best outcome they'd ever had with this test, and they felt the baby would do well. We were ecstatic. Then I met with another surgeon to talk more about what would happen when the baby was born. He said there were several indications which made him think our baby would have a very good chance.

The big day finally arrived, and Sean Anthony Feaster was born at 9:28 a.m. on Wednesday, May 28th. He weighed 5 lbs 4 oz and was 18 ½ inches long. Even though we had been continually told we wouldn't know what we'd be dealing with until he was born, things could not have gone more differently than we expected.

When the c-section started, the Doctor never said he started cutting, nor did he tell us when the baby was out. There were so many people in the OR, and I couldn't tell what was happening. The nurse came and told David not to worry about not hearing the baby cry. She wasn't sure if we realized they would intubate immediately and he wouldn't be able to cry. David said, "He?" She said, "Oh, you don't know what you had?!" She went to check, and when she came back, David turned to me and said, "You were right. It's a boy." We were both crying.

We were told David would be able to see Sean briefly and take a picture. But then someone said, "Get that camera from Dad." They grabbed it from David and took pictures for us. I think I knew then that something was wrong. Otherwise they would have let David see him. They handed us two pictures, and we continued to cry. Sean was taken to NICU, and David and I were taken to the recovery room to wait for information. They said it would take about an hour to get Sean situated, and then they would let David go up to see him. Over an hour passed, and we were told it would take a little more time. So we waited some more. We tried to act calm, but we were very worried.

Then the Neonatologist came into the recovery room with another Doctor and a social worker. I knew that was not a good sign. The Doctor said Sean was very sick. He had a significant amount of bowel and part of his liver in his chest, and he had a problem with his heart! Immediately I thought of my research which said most babies with both CDH and a heart problem would die. Sean had Tetrology of Fallot (TOF). We were told the team of Neonatologists almost lost Sean at one point, but he was now fairly stable. Jefferson was not equipped to handle cardiac problems, and Sean needed to be transferred to A.I. duPont Hospital for Children in Wilmington, Delaware (which is only 20 minutes from our home in Newark, Delaware) immediately and placed on ECMO. We were confused. We were at Jeff because we thought they were the only ones in the area who had ECMO. As it turns out, the Nemours Cardiac Center at A.I. does have ECMO, but it's only used for cardiac patients. And until now, there had been no indication Sean had a heart problem.

We were devastated. The docs asked if we had any questions. I said, "Is there ANY chance I can see him before he goes?" David told them I had not seen Sean at all, and David had only caught a glimpse. I hated to delay Sean from getting the medical attention he needed, but I wanted so badly to see him. When they brought Sean in, I was so happy and so scared. He was beautiful. We were able to touch him, and the social worker took pictures with a digital camera. I told the transport team,"Whenever you need to go, just tell us, because if you're waiting for me to tell you to leave, it won't happen." I knew Sean had to leave, but I couldn't bring myself to tell them to take him. It was so hard to see him go. I was terrified he would die before he got to A.I. David left to follow Sean to A.I. I felt so lost and scared, but I wanted him to get to Sean too. Sean needed his Daddy a lot more than I did. At the time I thought nothing in my life would ever be harder than what I just experienced. Unfortunately I was wrong.

Just as David arrived at A.I., a surgeon called me saying Sean was very ill and needed to go on ECMO immediately. He couldn't wait for David to get to the unit and wanted my verbal ok to go ahead in order to save Sean's life. A social worker (Judy) at A.I. called to tell me Sean had been baptized and kept me updated while Sean was in surgery. Sean was successfully put on ECMO and was safe for the time being. Not long after going on ECMO, they were able to turn the flow down 50%. Sean was able to do half of the work himself! We knew then how strong he was.

A.I. is an amazing hospital. The Cardiac Unit has rooms for parents so they can stay at the hospital. The room was set up so that when Sean was well enough he'd be moved there, and we could help take care of him. The room had beds, a bathroom, a TV/VCR, and a telephone. They provide parents with meals and other necessities. It was a wonderful set up for people like us with very sick children. We were able to literally live at the hospital.

David called me often. He told me about the people caring for Sean and how great everyone was. He said he sat with Sean and told him how much we loved him, and how I wanted to be there and that he'd bring me soon. There were times when he couldn't sleep and would go sit with Sean in the middle of the night (another advantage of being at the hospital 24/7). David said when he sat with Sean, an hour felt like five minutes. But to me, sitting in another hospital unable to be with Sean, five minutes seemed like five HOURS.

I was desperate to get to A.I., but because of a problem with my blood pressure, I didn't get out of the hospital until Sunday. Saturday night David came and brought pictures of Sean. He looked so different than he did the day he was born. For the rest of my life, I will regret missing those first days with Sean. There's no way to describe how it feels to be separated from your baby. I asked David about Sean's limbs and head and neck. He said, "Julie, there is nothing wrong with him on the outside. He looks perfect." A geneticist saw Sean and said he looked perfectly normal on the outside.

When I finally got to A.I., David said, "Do you want to go see Sean?" What a question! I was nervous, scared, and excited. David took me to CICU and there was my Sean! Even through all the tubes and wires, he looked absolutely perfect. Sean's left eye was swollen shut because his head had been turned since he went on ECMO, and his head was flattened from always lying on that side, but he was still adorable. I leaned close to him and said, "Hi Sweetie," and he opened his eye! David told Sean, "See, I told you I was going to bring Mommy." I didn't want to stop touching him. I wanted to make everything better. I didn't want to ever leave him again.

Jimmy came to visit that night. I took him to see Sean, and it was the first time I had both of my sons together. I loved it. Jimmy was thrilled to have a little brother. He often asked me if the doctors knew yet if Sean was going to live. We took the camera so Jimmy could have a picture of Sean to take to school. And I took a picture of Jimmy and Sean. Thank God I did because it is the only picture I have of the two of them together.

The next day was Sean's CDH repair. The surgery went fine. They put Sean's organs where they belonged and repaired the hole in his diaphragm. Sean had virtually no diaphragm on the left side. There was only a small lip, so they used Gortex. The next morning, the doctors made adjustments to Sean's settings to see what he could tolerate, and tried clamping off the ECMO lines to see if he would be able to come off. I saw Sean turn purple and it looked like he was struggling. He was not ready to come off, but they were able to turn the flow down. Now Sean was doing 75% of the work himself! His blood gases were great after the CDH repair. He was putting out urine which meant his kidneys were working. We were thrilled to hear he pooped for the first time a couple of days after the surgery. It meant his intestines were functioning too! The nurse said sometimes Sean would even try to take his own breath in addition to the ventilator, which seemed like a good sign.

I spent as much time as I could with Sean. It was so hard to get up and leave him. Mostly I held his hand or stroked his forehead, and sometimes he grabbed hold of my finger. At times the nurse would tell us not to stimulate Sean because of his heart rate. That was so hard. Whenever David talked to me or the nurse, Sean would open his eyes or try to move. He knew his Daddy's voice. Sometimes he would lift his arms and get so feisty that they had to strap his arms down. He was strong and he was a fighter. He opened his eye(s) a lot. I know he saw and heard us. We told him what a good boy he was and how strong he was. And we never left CICU without telling him we loved him and that we'd be back later.

The doctors tried clamping the ECMO again one day. Sean handled it for about five minutes then started to have problems. It was progress. He just needed a little more time. Three days after the surgery, the doctors decided to do Sean's TOF repair. They had hoped to get him off ECMO first, but he still was not able to do all the work himself. They didn't know how much of that was due to the heart problem, so they wanted to fix it and see what happened. David and I felt fixing the TOF would improve things tremendously. Sean was already doing most of the work himself, so it seemed logical that the boost the heart repair would give him would be more than enough to get him off ECMO. We knew ECMO saved Sean's life when he was born, but we also knew he needed to come off soon.

The surgeon repaired the hole in Sean's heart with "a rather large patch," and said, except for the fact that Sean's heart was still on the right, things went routinely. The Doctors let Sean rest over the weekend and kept him pretty heavily sedated. As usual, whenever they lowered the meds, he would start to move and get mad!

On Saturday fluid built up around Sean's heart, and they had to drain it. During the procedure the Doctor nicked Sean's lung. Air built up in his chest, so they put in another chest tube to get the air out and keep his lung from collapsing. Sean was very swollen from his surgeries. His kidneys stopped functioning after the heart surgery, so he was given Lasix and they turned the ECMO back up. They tried feeding Sean breast milk, but he did not digest it.

On Monday, they tried changing Sean's settings again, and he did not do well at all. He got VERY sick. It took all day for them to get him back to where he had been in the morning. It was so scary. It made me wish he was still inside me where he had been protected and safe. Tuesday morning an Echo showed Sean's heart still wasn't pumping blood properly. One side of his heart was larger than the other, so one was getting too much blood and the other not enough. They wanted to take him back to the Cath Lab and put a hole in his atrium. The blood flowing through the hole would be blue blood, and with his lung problem, Sean really needed oxygenated blood, but this was the only option they had. They wanted to do the procedure right away and were unhooking Sean's equipment to take him to the Cath Lab while I signed the consent form. Seeing my tiny, sweet baby going in for another procedure was heartbreaking. The procedure went ok, and Sean's blood gases were stable throughout the afternoon. That evening the Doctor said there weren't any major changes in Sean's status but they hadn't expected immediate results.

Sean's blood gases were fairly stable throughout the night - not great, but consistent. His chest tube was draining a lot of blood, but no one seemed concerned, so I tried not to worry. I noticed he hadn't been putting out any urine at all. He was still very swollen so an attachment was put on the ECMO unit to remove fluid. Wednesday evening Sean was still the same. I never asked what the next step for Sean would be. I was too afraid of the answer.

Thursday morning we were shocked when we saw Sean. The swelling was gone, and he looked so much smaller! It was a drastic change from the night before. He looked tiny, and his eyes were huge in his little face. Unfortunately, Sean's blood gases were not very good, and his bilirubin levels were rising, which was a sign his liver was not functioning properly. The nurse said they weren't planning anything special for Sean that day. Just then another baby was being transported in, so I had to leave CICU.

I was in our room when a nurse popped in and said a Doctor was looking for me. The Doctor came to our room and I started to panic. Part of me thought she wouldn't tell me anything bad without David there, but I was wrong. She said the Doctors got together that morning and discussed Sean's case. Everyone who had worked with Sean was involved in the meeting. They even called Doctors at other hospitals to get input. Sean wasn't getting any better; in fact he was getting worse. She said Sean had been on ECMO for the magic two weeks. They tried Nitric Oxide several times, but Sean still had too much lung resistance. His kidneys had shut down days ago, and now his liver was shutting down. His blood gases were not good, and his blood pressure was low. All of these were very bad signs. She said there was nothing else the doctors could offer him. The more she talked, the harder I cried. She went on to say we needed to make a decision. We could wait until things got worse and the Doctors would make the decision to take Sean off ECMO, or wait until something happened such as a stroke or a blood clot which would kill Sean, or make the decision ourselves to remove Sean from ECMO. She said some parents can't bring themselves to make the decision so they just wait and let God make it for them. And some parents don't want to see their child go through anything else. She knew the decision would be especially hard for us because Sean was still opening his eyes and looking at us. As far as they could tell, Sean's brain was still ok.

I couldn't believe what she was telling me. We always knew it was a possibility, and we had seen some of the signs, but it still seemed unreal. I kept thinking, "Is this really it? Is this the end? It can't be!"I didn't want to give in. I said, "If we wait, does anyone think there's any possibility Sean might get better?" I had to know if there was ANY hope at all. If there was the slightest glimmer, I would cling to it. She looked me straight in the eye and said, "No." Everyone had exhausted every option. There were no more tricks to pull out of the hat. She said Sean's heart surgeon (Dr. Norwood) was the most aggressive Doctor she's ever known. He will try anything and everything, and even he couldn't come up with anything else. As I thought about this later, I realized the Doctors probably knew taking Sean back to the Cath Lab on Tuesday was a long shot. I'm pretty sure they didn't think it would work, but it was the only thing they could think of to try. I take comfort in that because I know the Doctors really did do absolutely everything they could think of. Now Sean was basically being kept alive by "heroic" measures.

I called David and he said he'd be there right away. It seemed to take forever for him to get there. Finally he walked through the door and put his arms around me. Neither of us said anything. We just cried. When we pulled apart, I was not prepared for the look on David’s face. But I completely understood the look because I felt the same thing: complete sadness, total devastation, and helplessness. David said, "I don't want to lose my son." We went to see Sean. I looked at him and thought, "How can I let him go?" "What will life be like without him?" My heart was breaking. Thinking back, I admit Sean did not look good that day. Maybe it was because he was so thin and frail looking now that the swelling was gone. He didn't seem as strong as he had before. I don't remember him trying to lift his arms at all that day. He opened his eyes, but he looked tired and worn out. I was hoping the Doctor would have something new to say. But there hadn't been any miraculous change in Sean's condition.

I told David what the Doctor said about our options. David said no matter what we chose, it would still be decided by God. He was right. I had gone over the options all morning. Part of me thought, "Why make Sean go through anything else?" But when I thought of actually letting him go, I didn't think I could go through with it. No matter what we chose, the outcome would be the same. Sean would die. We would never bring our baby home from the hospital. David said, "I think we only have one choice." He had told me that while I was at Jeff, he had promised Sean he'd never let anything else happen to him. He cried as he reminded me of this promise to Sean. We couldn't let Sean go on knowing there was no hope. We would ask the Doctors to remove Sean from life support. Sunday was Father's Day, and I thought maybe David would want to wait until after that, but he didn't. He was adamant about not wanting to risk ANYTHING else happening to Sean. We didn't want him having a stroke or throwing a blood clot. Sean had been through so much. It would have been cruel, and it would have made David break his promise to Sean. We would call everyone to come say goodbye. After everyone saw him, we'd spend time alone with Sean. We thought it best to wait until evening to remove Sean's support. It would be quieter and there would be fewer people around.

Telling people was horrible. My Father was so upset he couldn't bring himself to come say goodbye. Jimmy took it hard too. I took him to see Sean, and before we left, Jimmy went to Sean and squeaked out, "Bye Sean" and started crying. I knew it was the last time I'd see my sons together.

The afternoon went by quickly. I was looking forward to things quieting down and being alone with David and Sean. As the last of the family left, it started to storm. It had rained almost every day while Sean was in the hospital. I kept thinking the sun would finally come out the day we knew Sean would be ok. So it was fitting that there was a storm on Sean's last night. Sitting with Sean was bittersweet. He was so beautiful. His skin was so soft. He had his eyes open quite a bit. We took pictures of each of us with Sean. And the nurse took some off all three of us together. Then we just sat watching him, holding his hand, touching his face, rubbing his arms and legs, and trying to memorize every detail.

The Doctor explained what would happen. He said we could be there with Sean. It wouldn't be easy to watch him die, but I could never have walked away and left him by himself! Then they would clean him up and bring him to our room for us to hold. The Doctor told us to take our time and let him know when we were ready. I couldn't imagine us having the emotional strength to tell him we were ready to let Sean go. How do you choose that moment? While we were sitting with Sean, another baby was being brought in. The baby must have been very sick. Practically everyone in the unit was helping to get the baby stabilized and settled. There was a lot of activity around the baby, and I couldn't help but think this was probably exactly what it was like when Sean was first brought in. Normally we would not have been allowed in the unit while all this was going on. But no one ever asked us to leave. They just pulled the drapes around us.

After a while, we went to take a walk and get clothes for Sean. When we got back, everyone was still busy with the other baby. I was glad because it meant we had more time to spend with Sean. It was getting very late, and after a while, we decided to go to our room for a bit The nurse said they were wrapping things up with the other baby and would call us as soon as the Doctor was free. Soon the nurse called and said the Doctor was ready. It was just after midnight on Friday, June 13th.

When we got to CICU, David walked directly over to Sean without washing his hands first. I was surprised, and then I realized there was no reason to wash up this time. The Doctor asked if we wanted to have an autopsy done. Sean's little body had already been through so much. I didn't want him being cut open again, but we agreed to let the geneticist have a tissue sample. I briefly wondered if the geneticist would use the sample to see if there was anything else wrong with Sean. If there was something else, I wasn't sure I wanted to know. He would always be my perfect baby.

The Doctor told us once they gave Sean the pain medication, we could not change our minds. And then it was time. For months, I had prayed this moment would never come. For weeks, I had begged God to let Sean get better. Now all I could do was pray for a miracle. Maybe, just maybe, Sean would be able to breathe and his heart would work on its own once the machines were turned off. I knew the chance of that happening was minute, but I still wished for it. There was nothing else I could do except be there for my baby, my Sean, and comfort him as he passed away.

We stood on either side of Sean and each held one of his hands. I heard the Doctor tell someone to turn off the machines. We cried as we held onto Sean and told him how much we loved him. We touched Sean's face, his hands, his arms, his legs, and his hair. I don't know the exact moment when Sean died. His eyes were open the whole time. That made it hard, but I was also glad Sean saw us as he died and knew we were there with him. Suddenly his chest moved and he seemed to be trying to take a breath. I said, "It's ok, Sean." I wanted him to know it was ok for him to let go. He didn't need to keep fighting for us anymore. He could finally rest. David must have felt the same way because he said, "It's ok, Sean. You go be with Jesus." It seemed like we were only there for a few minutes, but it must have been longer because the nurse and Doctor told us we needed to go. I didn't want to walk away yet. I hated the thought of leaving him. But we did. For the first time, I left CICU without telling Sean I'd be back later.

The nurse brought Sean to our room and said she thought we'd like the way he looked now. I was afraid to look at him until she was ready to hand him to us. She gave us a memory box and started to hand Sean to me, but I told her to give him to David first. For the first time, we looked at Sean and saw him with no tubes or wires or tape. He was so cute! He seemed smaller than he had in his bed. He looked like he was sleeping. He looked like the angel he now was. The nurse took pictures of the three of us then left us alone and said to call when we were ready for her to take Sean back. David held Sean briefly then gave him to me. He felt wonderful. Finally, after all this time, I had my son in my arms. We took turns holding him and used up a roll of film. I couldn't hold Sean close enough or long enough. I knew I would never have enough time with him. I didn't ever want to call the nurse. I wanted Sean with me forever. But eventually I let David call her. She came and took our baby away. I would never see Sean on earth again. I would never touch his face again. I would never hold his hand again. I would never get to do any of the things I had dreamed of doing with him.

Several months later we met with the geneticist. He found that Sean had 13 ribs, a hemi-vertebra or butterfly-shaped T7, and some other minor variations including a transverse palmar crease and a fifth finger clinodactyly. Sean's chromosomes were fine, however, which rules out a lot of things. There is the possibility that Sean had Fryns Syndrome, but the geneticist thinks it is unlikely. Sean did not have all of the features consistent with Fryns. Due to all the blood transfusions, Sean was unable to be tested for 22q11 deletion, but David and I were tested and our results were normal.

We had a beautiful funeral service for Sean. He certainly made an impact on many lives during his short time with us. David and I love talking about Sean, and we think of him constantly. I've heard people who've lost a child say the baby who died is not the one they were meant to have. I don't agree. If I wasn't meant to have Sean, God wouldn't have given him to me at all. What I am trying to accept is that for some reason God decided Sean wasn't the baby I was meant to keep. But there's no doubt in my mind I was meant to have him. Sean will never be with me physically again, but he will always be in my heart.

Sean's mom, Julie (Delaware)

Monday, June 22, 2015

June 22 - Dear Nicholas Sparks (Guest Blogger Becky Buist)

Dear Mr. Sparks,

It was a bright and sunny day on Toms River North's football field, as we, the class of 2000, graduated! As I looked around, young adults, who have been my friends, classmates, and teammates for the past 4 years, and some of them even longer, surrounded me. I thought about all the memories and I wondered what destiny had-in store for us?

My name is Rebecca Marie Buist, but most everyone calls me Becky. I was born on April 23, 1982 to my loving parents, David and Mary Beth. However only a few moments after I took my first breath of life, the doctors told my parents that I was born with a left sided diaphragmatic hernia. Needless to say they were heart broken and anxious as their first born baby girl was whisked away to have the first of what would be 3 surgeries. The first surgery was fairly successful, but the next few weeks would be critical. I had my second surgery at two months and after that one I was fine until I was 5 years old. I was in kindergarten when I had my last surgery as a result of scar tissue from pervious surgeries that had "rubbed against each other" and caused a kink in my intestines. Once that was fixed, I was "good to go"!

I do have scars on my stomach, but- it really hasn't phased me too much! I live by the beach, so to wear a bikini while body boarding in the waves, is not comfortable at all! (Besides, I don't exactly have washboard abs!) The only other visible scars I have are three pinhole cut downs, from the IVs on each wrist. One time in first grade, there was this mean little boy who teased me about the scars. Naturally, I didn't like being made fun of, so I did the best thing I could think of. I told them that I was scuba diving in the Fla. Keys, where I was attacked by a monster great white shark! Then I proceeded to show him the scars that were on my stomach! He was so impressed with my adventurous near death experience, that I was the single most popular kid in my grade! To this day, when people ask me what happened to my wrists, I tell them that a shark attacked me when I was very young. They are always dumbfounded and amazed! What can I say, I'm a drama queen!

My Mom always used to say that she was glad I was a girl with a CDH rather than a boy, because boys tend to be into sports and a lot more active than girls are. She figured that I could just be content to play with dolls and sing in choirs, since there wasn't any peer pressure to play ball and act wild. However, I wasn't the "play with dolls and do quiet things" kinda girl. I was the only girl to play with the boys on the playground, playing basketball and football and anything else they did! I played on the 6th grade basketball team and the junior high school teams too! When I entered high school I started to play field hockey and lacrosse. I was the varsity lacrosse goalie since my freshman year, beating out 3 others for the starter spot. I continued to play all four years, improving my game a little more each year. This past year was amazing- it finally all came together! My team's record was 20 wins 2 losses, and we made many headlines! Including winning our championship for the first time ever. I was MVP of the team, I was player of the week, I made 1st team All-Shore, and 2nd team All-County. I was goalkeeper for the Ocean vs/ Monmouth All-star game and was MVP of the team too!

At this point in my life, I have so many great experiences already! Nothing has ever held me back from doing something that I really wanted to do. I consider myself a very strong willed person with a sunny personality and a bright outlook on life. I have a very supportive and loving family including my 2 brothers, David 15, and Ryan 8. I always live life to the fullest and I find something good in everyday. What does destiny have in store for me? Only God knows. All I have to do is aim for the moon, that way if I fall short ... at least I'll be amongst the stars!

Becky Buist

Sunday, June 21, 2015

June 21 - Dear Nicholas Sparks (Guest Blogger Sue Wilkinson)

Dear Mr. Sparks,

Anthony and I had a great life. We both had good jobs, he a manager within an advertising company and myself a teacher of intellectually disabled students. In my spare time I painted and had several successful exhibitions. We were social people, getting together with our friends regularly. We went to the movies often, saw a show now and again and had many cups of coffee and meals at our favourite cafes. We had a house fifteen minutes from the city and over a few years had completed some renovations. All in all we were normal people leading a normal life. Anthony and I wanted a family, we were in our early thirties, we waited until the moment was right. One weekend we went to Warrnambool. It was lovely being there amongst the greenery and near the ocean. It was there Henry's life began. Two weeks after our trip I began to feel sick. I made an appointment with my doctor. There, I had a pregnancy test. The lines on a simple urine test confirmed my suspicions. I was pregnant. The doctor hugged me, then sat me down. I continued to look at the test. I was incredibly happy. This was my first pregnancy. The schedule was set. I was due November 18th. It seemed so very far away. I drove straight in to see Anthony at work. I bought chocolates and told him. He was ecstatic. We told our families immediately, we were bursting to share our good news. They were all so happy for us. I didn't drink or smoke, I avoided our cat and watched my diet. I read everything in sight. We started to create a nursery, looking at furniture and baby goods. Having a baby consumed our every moment together. We talked constantly about plans, the nursery and the birth. Together we looked at hospitals, and decided upon a birthing centre at a local public hospital. We wanted a minimal intervention birth. Anthony pampered my every need. As the pregnancy progressed I rested in the evenings instead of going out. We enjoyed our time together, the three of us. I went along to my regular doctor and midwife visits. Everything was normal, or so I thought.

At 18 weeks I heard the heartbeat. I cried. I was so happy. Anthony came along to each ultrasound with me. At our first ultrasound we were so excited. On a small monitor we saw our baby moving inside me. We were reassured that everything was normal. We watched the ultrasound over and over again at home. On our second ultrasound we found out I was carrying a boy. In the 29th week we attended our first antenatal class. We met other expecting parents. We compared bellies, expected dates and pregnancy stories. It was such an exciting and informative evening. We went home buzzing with excitement.

It was difficult to sleep the night after the antenatal class. I thought it was a mixture of excitement and worry. I complained to Anthony of a rough night. I had a shower and got dressed. My belly seemed even bigger than normal and the baby seemed high, almost under my ribs. There was a trickle of fluid down my legs. It was then the roller coaster scooped us up. I contacted the Family Birthing Centre and after a short question and answer time the midwife instructed me to come into Emergency. We navigated our way through peak hour traffic. It was so incredibly frustrating being stuck behind trams, trucks and cars. We did our best to remain calm, but the fluid was trickling out each time I moved slightly. We eventually made it to the hospital. I got out, Anthony parked the car. I walked towards reception holding my hands between my legs. I was now terrified. The nurses at reception asked my name, it was difficult to speak. I was helped into a cubicle and Anthony rejoined me. Within minutes I felt an incredible surge of fluid. The nurses were great. They strapped a heart monitor to my belly. We heard the heartbeat. It was strong. A doctor was quick to examine me, she told us that there were a variety of possibilities now that my waters had broken. Labour may begin, an infection could develop signaling the need to get the baby out of my womb, or the baby could remain safely in the womb for the next eleven weeks. It was obvious now that every hour the baby remained in my womb would be considered a bonus hour. It was an incredibly confusing time. There were so many new faces, medications, procedures and technical terms. Our minimal intervention birth plan was now in the wind. I was given an injection of steroids to aid the development of the immature lungs, antibiotics to fight infection and was put on an IV drip. The next 24 hours were incredibly difficult. I had an ultrasound, but due to a miscommunication, I was rushed to delivery suite for the impending birth. Anthony held my hand and stroked my face. The cervix was thought to be dilated, but was not, and the rush of faces into the delivery suite settled. The baby was not going to be born at this stage. It was difficult to remain calm. Twenty four hours passed by slowly and I was given a second steroid injection. I was now on a drip of ventolin to help ease the pains I was having. The ventolin did ease the pain, but added to my feelings of disorientation. I was moved to a ward where it was possible to stay for the duration of my pregnancy, however long it may be. I started to feel a little more confident. Anthony and my parents were very reassuring but we were all so shocked. Prematurity was not known in my family and the pregnancy had been progressing normally. When the ventolin course was complete the pains returned. We timed them. A nurse helped me through each pain. The decision was made to move me back to delivery suite.

More new faces introduced themselves, in the end I had no idea who was who. A surgeon spoke to me briefly and told me that he thought the baby needed to be delivered. An infection had developed, I was moved to theatre for a caesarean. I was in a lot of pain and extremely frightened.

Anthony sat beside me, we looked deeply into each others eyes. I could see his fear, but he smiled through his anxiousness. We were silent. I was confused and disorientated, I relinquished control. I was now in the hands of Anthony and the many people who filled the room. The surgeon began the procedure, and within minutes I looked up to see a little purple baby.

Our baby. Our son. He weighed 1600 grams and was 40 cm long. My heart was filled with such love. He was so beautiful. I reached out to touch him, but without any co-ordination my touch missed. I had been prepared for the situation of not being able to hold him, but it was difficult. Our moment of joy turned to fear quickly. We waited to hear his cry. He never did. In the corner of the room a team of people surrounded him. The voices I could hear were distorted, and I was unable to see what was happening. I could hear a strange hissing of air, and knew that they were trying to get him to breathe. I wanted someone to tell me what was happening, but was willing to wait until someone had time to explain everything.

Anthony and I continued to look in each others eyes. We were so confused and frightened. We waited. The sound stopped, the voices continued. I felt a chill run through me. The surgeon continued and after several long minutes we saw Henry, alive, in a humidicrib, and on his way to the hospital neonatal nursery. Anthony was asked for his name. Henry James was given an identity.

I was moved to a recovery area, Anthony rejoined me and together we waited an eternity to find out how Henry was doing. We feared the worst. The paedeatrician came and stood by my bed, he had the 'I'm so sorry eyes'. The look that says 'prepare yourself, I have something horrible to tell you'. He told us that Henry was very sick. 'Sick', I thought, 'He's alive, he's alive!'. My mind was dancing, until the music stopped and I started listening again. Sick? How sick? Whilst in recovery, Henry had been given an X-ray. It showed he had a congenital abnormality? specifically, a left diaphragmatic hernia. There was a hole in his diaphragm and his intestines had moved through the diaphragm and into his chest. His immature lungs were barely functioning, and his left lung had not fully developed because of its lack of space to grow. He was struggling even with a ventilator. We were told the next 48 hours were going to be the most difficult and there was a real possibility that he would not survive. He was now too sick for the neonatal nursery and required transport to Intensive Care at a nearby hospital. Soon I was wheeled down the corridors to the neonatal nursery. Outside in the hallway my parents and Anthony were crying. I thought I was too late. I feared the worst yet again, but Henry was alive and preparations were being made for his transfer. My time with Henry remains blurry. Before Henry's transfer I saw him once again back in my room. It was difficult to see his face behind a large ventilator tube. The transport team gave us two polaroids before leaving. I was now going to be separated from my baby, not by rooms, but by kilometres. I felt incredibly sad and confused. Surely this wasn't really happening, surely I would wake up in the morning, in my own bed, pregnant. Anthony held my hand until I fell asleep. He stayed the night by my bed.

I woke early. I saw the hospital room. This was no dream, this was real. Anthony was still by my side. My parents walked into the room as I was waking. The smiles on their faces told us Henry was alive. Theyhad sat by him all night. They told us about the care Henry was receiving and gave us two polaroids the nurses had taken. He looked so tiny and vulnerable laying there, connected to the machines. We kept in contact with Intensive Care. 'Stable' became such a celebrated word. It was difficult to be so far away from my baby. The day passed slowly and we counted each and every hour. By the end of the long day we were starting to feel a little more confident about Henry's survival. We decided Anthony should spend the night at home, he had not slept for days and had been coming and going from both hospitals, he needed the rest. At 1am I called Intensive Care. A friendly voice spoke. She was the nurse looking after Henry, she asked me how I was feeling and showed genuine concern for my predicament. She told me that Henry was no longer stable. She suggested that if possible I should come in to see him. The shake in her voice seemed to indicate that perhaps Henry was in real trouble. I phoned Anthony and told him to come quickly. I was helped into a wheelchair. I had a catheter and a drainage bag. I was uncomfortable to say the least, but my physical pain was not a priority. I sat and waited, every minute waiting for Anthony seemed like an hour. I watched the clock tick slowly. I desperately wanted to be with Henry, hoping he didn't die before we arrived.

We reached the hospital after a slow and cautious drive. Anthony wheeled me through the long corridors and we waited outside Intensive Care until we were given permission to enter.

In a large room at the end of a long corridor I saw my son. He was attached to so many machines. He had lines, tubes and things I had no idea of their name or purpose. Henry was laying on his back, his arms and legs extended to his sides. The nurse looking after Henry introduced herself. She told me that since our conversation Henry had regained stability. I tried desperately to understand everything she said, but I was still on painkillers, and was in such a state of shock. I understood that Henry was stable, he was on life support, still within the dangerous 48 hour period, and I was unable to do anything to help him. It was incredibly confusing time. We felt such a surge of powerlessness. I was physically and emotionally exhausted and felt so sick being out of bed, but we stayed with Henry for a few hours. A single touch reassured me. I wanted dearly to hold him, protect him, help him, but it wasn't possible. We touched his body and smelled his hair, we took polaroids. I held the polaroids to my heart as Anthony drove back to my hospital.

We cried, and started to question 'Why...Why us...Why Henry?'. I was helped back into bed. I rested for the remainder of the night, calling Intensive Care every couple of hours. Anthony went home, and the night passed slowly.

The next morning was brighter. We had been informed of accommodation at Henry's Hospital. Anthony made arrangements for my transfer. I hated being separated from my baby, and at midday, only 36 hours after Henry's birth, I was discharged. No longer on painkillers, I could see Intensive Care clearly. There were other children, on similar beds. Computer screens had lines and numbers, machines beeped and ventilators wooshed around me. It was terrifying. Reality hit and it hit hard. I felt so helpless and stupid. I had no idea of the complications of prematurity and had never even heard of a diaphragmatic hernia. We started to learn, we asked questions and were supported by a great team of doctors and nurses. We were given as much information as we could

absorb. The doctors were not confident of Henry's ability to make it through, he was faced with two substantial problems. There was the realistic possibility that Henry's treatment could give him brain damage, blindness, deafness or more. Our love for Henry was unconditional. We wanted him to survive regardless. The doctors tried to keep our feet on the ground, but we clung desperately to hope. It was all we had. I was producing breast milk and had been so looking forward to putting my baby on my breast. It was stressful not being able to hold him, feed him, bond with him. I was taught how to express using an electric breast pump and every three to four hours I would go into a room to express. I adapted to writing Henry's name on each bottle, sterilising procedures and storing my milk. We started to document Henry's life. We took photos and began writing in a diary a nurse had made.

Time took on a new perspective, and eventually the critical 48 hours passed. Henry was doing well. He had a long road ahead, but we developed a margin of confidence. Each hour continued to crawl by, and each day lasted an eternity. We sat with Henry hour upon hour, day upon day, asking questions and learning. We watched as his tubes and lines were changed, saw him receive blood transfusions, sat with him when he was given medication to paralyse him, and listened to the sound of suctioning of the fluids in his throat. It was incredibly distressing to watch as others cared for my baby, all I could do was talk, listen and learn.

We talked to so many people, doctors, surgeons, neonatologists, paedeatricians, nurses, dieticians, radiographers, ultrasound technicians. It was all so confusing. Henry had small steps forward and some steps back, we learnt how to cope with good and bad news. Anthony and I had our maternal and paternal instincts and not the normal parenting environment, so we did what we could. We wiped Henry's eyes, held his hand and talked to him constantly. We read him stories and pulled the tail of a musical toy to distract from the relentless beeping machines and the thumping of the high frequency ventilator. We placed little soft toys in his bed. It was heartbreaking, but we kept going. We washed our hands several times a day, and limited Henry's visitors as there was a real fear of transmitting germs. Infection was a great possibility and Henry would have difficulty fighting off any infection at this stage.

On the 10th of September Henry was stable enough for surgery. It was scheduled for the following afternoon. I worried all night, 'Would he make it another day without an infection? Would we miss the window of opportunity?' My parents, Anthony and I waited in the Intensive Care waiting room on the afternoon of the surgery. We attempted to remain calm. The colour drained from our faces as we walked paces within the tiny room. We held each other. We cried, and we waited. The surgeon had large hands and a gentle face. He told us of the procedure and relayed a feeling of confidence. He informed us of the risks, and they worried us, but we continued to cling to hope. In our minds, if Henry could make it through this operation, he would have a greater chance of survival, a greater chance of coming home. Three hours crawled by. Henry's trolley was wheeled past the waiting room door, he had survived the operation and was being returned to his area within Intensive Care. I was desperate to see the surgeon and after several more excruciating minutes he walked down the hallway towards us. I checked his eyes for the Sorry look. It wasn't there. He smiled. We cried. He told us that the surgery was successful. Henry's intestines were now out of his chest and where they were supposed to be. His lungs were now in enough space to form. A thousand thank you's were not enough. Slight colour returned to our drained and aged faces and within seconds we were by Henry's bed. A large scar extended from the centre of his chest on a slight angle to the left side of his body. It was covered in a plastic film. We celebrated his strength and for the first time the roller coaster seemed to slow a little. We were able to catch our breath.

We adapted to living at the hospital, our old normal life seemed so incredibly far away. Our new life lay on a bed in Intensive Care. We ate at odd hours, slept badly and communicated by public phones with family and friends. We were prepared to live at the hospital for a lifetime if it meant we could be with Henry. There was nothing for us at home. For five more days we watched the outside world scurry through their normal lives from large windows. We wondered when we would be able to take Henry into the outside world, away from the machines, away from the hospital. We talked about all the things we could do with him, places we would go and things we would do together as a family. Each day signaled a little improvement and we felt confident enough to allow Henry some visitors. We began to make arrangements for the upcoming weekend for Anthony's parents to meet their grandson. We were enthusiastic for them to see our beautiful little boy. My parents visited daily. They kept buying Henry toys and things and would sit with him each evening. They wrote in his diary and took photographs at every opportunity. The love and dedication they showed saddened me. I felt such overwhelming guilt. I felt responsible for putting everyone, including Henry through this. I began to question my diet, my lifestyle. I wanted a reason for Henry's condition. There wasn't one to be found.

On the 16th of September our worst fears were realised. Henry showed signs of an infection. The word sepsis still rumbles through my brain over and over again. Henry's usual pinkish skin had changed to a murky grey. We were asked to sit in a nearby waiting room. The surgeon had been called and he spoke to us. He would attempt surgery if Henry became stable once more. That surgery never eventuated. Henry's heart stopped beating. The doctors gave us five minute updates, until eventually he was stable. We refused to sit in the waiting room any longer, and told the doctors we wanted to be with our son. They were supportive of our needs, and warned us of Henry's stability and his now bruised and bloody appearance. We cried when we saw our little boy. His chest was now very bruised, there was blood in his ventilator tubes. Doctors explained that Henry had been given heart massage and more medication. It was horrific seeing Henry like this. Guilt and fear once again consumed me. We talked to the doctor in charge, we asked questions that we thought we would never want the answers to. We stroked Henry's body gently. We told him of our love for him. Within minutes a beep sounded that I will never forget. I looked to the monitor that I had studied for thirteen days and watched his heart rate jump around erratically. Doctors and nurses jumped into action. It was frantic, they gave more medication, altered lines and tubes and once again began heart massage. Watching those thumbs pressing up and down on my baby was incredibly distressing. I felt so helpless, so pained. Someone in the room sat us down and gave us tissues to wipe our eyes. The thumbs kept moving up and down, up and down. Henry was not responding. Henry was separated from the tubes that had maintained his life. He died in the arms of his daddy at 11.40 am that morning. Anthony passed Henry to me, his little body now limp. I held him tightly. This was my first hold. I felt the crash of my heart as it fell from my chest and onto the floor. I was oblivious to the world around me. We went to a nearby room where we could be alone. Tears poured from our eyes. We asked 'Why Why?' and wailed 'No No No'. Henry's eyes were closed and he had a gentleness on his face. For the first time in thirteen days all .was quiet except for the words we spoke and tears we shed. There were no doctors or nurses, no noisy machines. A little while passed and a nurse helped remove the lines and tubes and peeled away a facial bandage that covered his nose and cheeks. We saw our son for the first time. We were asked if we would like to give Henry a bath. We did. We dried him gently and continued to talk to him as we wrapped his body in a bunny rug. We were so incredibly sad, so angry and so upset with ourselves. In our minds we had failed as parents. We had watched him die. We felt helpless and useless. We hated ourselves for not being able to protect him. My parents were called and arrived fairly quickly. Together we felt the pain. We held each other as the questions without answers filled the air. We all held him, kissed him. It was torturous. This was so wrong, so unfair, we were holding our dreams, our future in our arms, and he wasn't breathing. Nothing in our lives had prepared us for this. It was horrible. We took hours to say our goodbyes, it felt like minutes. Leaving Henry in the room was incredibly painful. We left our hearts and love of life in that room. The atmosphere in the normally bubbly Intensive Care was now so quiet. The staff were genuinely upset and were comforting as we were helped from the room. We were silent as we navigated our way through the long corridors back to our room. We were limp and empty. Anthony's brother, hearing of Henry's death, had come straight into the hospital. Mum, Dad and Anthony's brother held us and helped us gather our things. We needed to leave. We could not stay knowing that Henry was no longer alive. We ached with grief. Anthony and I held each other tightly.

We went home. It was a long and painful drive. I sobbed uncontrollably. I was numb. Only hours ago we had been sitting by Henry's bed confident of his progress. Once home, I had a bath and put on my pajamas. There was a cold silence. No beeping machines or ventilator noises, no doctors or nurses performing their daily duties. Anthony cried, I cried, my parents cried, Anthony's brother cried. We filled the oceans that afternoon. I spoke to my doctor, who gave me advice on the management of my milk. The pain of my breasts added to the pain in my soul. The thought of having Henry in a cold room alone distressed us. We wanted to organise the funeral quickly. As with so many other things over the last thirteen days, we had no idea of what to do. We never thought that we would have to organise our son's funeral. I called a local funeral director and made an appointment for the next day. The rest of the day remains blurry. The next day the funeral director brought around a small urn decorated in teddy bears. She was very gentle with us, and helped us through the possibilities. Anthony and I had discussed everything, and decided upon an unattended cremation and a memorial service. We chose an outfit for Henry to wear and gave the funeral director a musical toy and a gold angel to be cremated with him. That night, after an incredibly depressing day, Anthony and I prepared a service that celebrated Henry's life and showed how much we loved him. It was our job as parents to do the best we could. Anthony and I were inseparable We held each other and cried almost constantly. We felt the torture of organising a service for our baby. It was horrendous. We asked Anthony's brother and a dear friend to read for us at the service. They were invited over and together we read their scripts. My parents wrote a beautiful letter to Henry and offered to read it at his service. We were so thrilled that they wanted to share such a personal letter. We had some visitors who were kind enough to sit with us, listen, hold our hands and wipe the tears from our cheeks. On the morning of the service it rained, but the sun somehow managed to shine between the clouds. Anthony and I went early to the chapel to spend time with Henry and set up the table. Anthony placed flowers, toys and special gifts around the tiny teddy bear urn. The sun streamed in through the leadlight windows behind the table. Family and friends filled the chapel. We were astounded by the number of people who attended. We had asked that no children attend. I could hear continuous sobbing from every direction. Although incredibly difficult, the service was beautiful. We were rich in support. I had worried that everything would go wrong. The roller coaster was still roaring, emotional highs and lows welled up such confusion. We were still waiting to wake up from this nightmare. An after service get-together had been organised at Mum's, but Anthony and I did not want to attend. We had made plans to scatter Henry's ashes at Warrnambool, and wanted to do it directly after the service. We could not face bringing our little boy home in an urn.

We set off to Warrnambool. Anthony drove carefully. He had a look of sadness and determination on his face. We had wrapped the urn in a bunny rug and I held it tightly in my arms. The urn moulded to my body. It was the longest time I ever held Henry. We arrived at Warrnambool and located a favourite place of ours. It was a mountain overlooking a lake and the ocean. We walked to the top and laid down flowers. We wept as we scattered Henry's ashes and said our goodbyes. We sat there oblivious of time, only noticing the day was ending by the sun sinking behind the mountain. We stood to go home, but were unable to leave. Eventually we had the courage to say a final goodbye and started the walk down. Lead lined the soles of our shoes. Each step was torturous. I was awash with feelings of abandonment. Anthony pointed to some ducklings bobbing for food in a river. He said the most reassuring thing: 'Look, this is a place of love and life. It is a place of families and birth. This is the place for Henry.' We drove slowly towards home. I .needed constant reassurance. I worried Henry would be cold, lonely and frightened, it didn't make sense. I was so confused. Our pajamas were on our bed waiting for us, we put them on and snuggled together. We cried, eventually we fell asleep.

I face real fear every day. Fear that I will forget, fear that I am unable to live a happy life and fear of losing my sanity. My whole world has collapsed around me. My dreams and hopes are so out of reach. Lost is the fun free spirit, the dreamer, the hopeful. Sometimes I feel so on top of things, able to cope and able to put on a brave face to make it through the relentless obligations and normality of life, whilst other days I find it hard to make it from one room to the next. I find times where I laugh and smile and sometimes feel guilty for smiling, for being happy. It's confusing. It is so incredibly painful living without my son, a pain that generates from my heart and ripples through my entire soul. There is no solution, no easy way of dealing with this, no band-aid is big enough to heal me. I had difficulty understanding how life could go on, I wanted the clocks to stop, for the world to stop spinning, life would never be the same, we would never be the same. It was so difficult watching a world that seemed relatively unaffected by our son's death. Anthony resumed work a couple of weeks after the service. They wanted him back on deck. It took him a lot of courage to return and he struggled through the first few weeks. He put on a 'work mask' which helped him to get through each day. He divided his time into work time and grieving time. I worried he was pushing his feelings down and not dealing with them, but he was dealing with everything, in his own way. He finds some days easier than others, but manages to hold himself together. I took time off work. It gave me time to think. It gave me time to stay in my pajamas and hide away from the rest of the world when I needed to. Months after Henry's death, my well-worn pajamas are stashed in a drawer. I don't need them as much now. I have started to learn how to cope, and how to live without Henry, I have started to learn to smile again without feeling guilty, I started to believe in myself again, realising that I will never forget Henry. Sleeping is hard, waking is hard, breathing is hard, it's all so hard, and my arms feel empty. I yearn for my son. I grieve for him. I want my hands to keep busy to distract from the gravity of my empty arms.

These are some of the things I kept occupied with; I wrote letters to family and friends to thank them for their support. I made up a photo album of Henry's life. I visited family and friends. We practiced retail therapy, we spent money. I started a journal. We went to regular counseling sessions. I created a painting for my son titled 'Empty Arms'. I wrote to Intensive Care and thanked them for their support. I started writing this booklet. I had a strong urge to tell Henry's story. I tracked down a mother of a little boy who was in Intensive Care. Her son died shortly after Henry. We met and talked and continue to support each other. I located a Parent, Advocacy and Support Group for Diaphragmatic Hernias on the Internet. I consumed everything I could research from the Library. I made an album of all the cards and letters we received. Anthony bought me a rose gold locket. I put some of Henry's ashes inside. I wear it daily. We contacted the International Star Registry and named a star after Henry. I organised and donated a trolley housing a CD player, CD's and books for parents and children in Intensive Care. Engraved on the trolley are the words 'Henry's Trolley'.

Our family and friends had so much trouble dealing with our grief. We were new people, sad people. Most admitted that they didn't know what to say or do, and in the weeks following Henry's death we somehow found ourselves educating and consoling others. We made the decision to stop helping others and help ourselves. Some people had so much trouble they avoided us. Some rang often, others rang infrequently or not at all. Others used initiation and helped us where they could. Everyone was different in the way they dealt with us, we accepted that, but couldn't tolerate insensitive statements, questions, or band-aid solutions, that, to them offered us hope or meaning in our grief and healing. We wanted people to realise that they didn't have to offer us bandaids. We wanted people to listen, not talk. We were so appreciative to those who continued to say Henry's name and wanted us to talk about him. Mixed in with the bandaids were great acts of kindness and compassion. People would go out of their way, showing initiative, not waiting for the reply to 'If there is anything I can do.' Some friends rang almost daily, one cooked us dinner, another wrote a poem, Anthony's sister created a needlepoint, my brothers planted trees in Henry's memory, some friends sent cards and flowers on Henry's due date, a family friend prepared all of the food for after the service and our florist donated all of the memorial service flowers. We were also given rose bushes to plant in our garden. We were pleased people were acting on their hearts It meant so much that some avoided band-aids all together.

Having a son born prematurely in a traumatic birth, hearing a life threatening diagnosis and watching Henry undergo treatment and losing him has changed me, my perceptions, my relationships and so much more. I have come to the following conclusions: I am still a mummy even though my son is not in my arms. Maternal instincts don't just go away. Most people don't know how to cope with grief. They don't know what to say or do. Friends become strangers and strangers become friends. Some days I cry a lot, some days a little, but I still feel the same on the inside. Some days I am better at juggling my emotions. Grief makes me say what I think in half the time. Anthony continues to grieve with me. He needs me as much as I need him.. I respect that he grieves differently to me. I am vulnerable. I hate the roller coaster. I shouldn't feel guilty when I smile. I shouldn't push myself too hard. Sympathy cards soon get replaced by bills. Everyone you tell has a story to tell. Not everyone is a good listener. It's not fair, it's not right and we didn't deserve this. I wanted to be normal again but didn't know what normal was. Being sad isn't selfish. I had to pick up the pieces of my life and learn who I had become. Still numb with disappointment, Anthony and I made the decision to have more children. We felt such guilt when we admitted that we wanted another baby. We talked to each other about how we felt. We didn't listen to people who said 'wait', we didn't listen to people who said 'do it straight away'. We listened to our hearts and each other, and started trying to conceive when we were ready. We somehow thought that having bubba two would be like replacing Henry, it wasn't. We thought that by having bubba two, we would be closer to forgetting Henry, we couldn't. We wondered if others would think bubba two would be an answer to our grief. It didn't matter what anyone else thought. We were definitely going to do things differently this time. We decided not to tell others of our plans to have bubba two. We felt our lives had somehow ventured into public property and we wanted to have some space, some privacy, some time to ourselves. My innocence had abandoned me. I struggled waiting each month for a positive result, and then, when I eventually conceived, I worried that something would go wrong.

The roller coaster rides continue to rush us though so many ups and downs, so many highs and lows and so many twists and turns. Here we stand, dizzy, disorientated and without our son. We have made it through hours that we thought would never pass, and made it through days and weeks when we thought it impossible, but we did it. There are so many reminders in and outside our home, they are everywhere in every form, from advertising to books, movies, shopping centres and so on. I also have physical reminders of my own: a huge scar, and new padding around my belly.

Three days after losing Henry we were unable to look after ourselves. We cried constantly, didn't eat, slept badly, had little concentration and relied heavily on others for our basic needs. We managed our days hour by hour. We waited for someone to tell us Henry was alive.

At three months we were still in shock, but we started to learn how to cope. Some days were easier than others. Life was so very complicated now. Some of the people around us were expecting us to 'move on'. We weren't ready. We missed Henry terribly and cried almost daily. We carried our heavy hearts through a loneliness that defied description.

Three Years. We haven't come this far yet. I can't imagine where we will be or how we will be feeling three years from now. Whatever we do I know we will be missing our son, thinking. 'Henry would have. Henry should have. Henry could have.'

Henry's mom, Sue Wilkinson (Australia)